Children of Parents With Mental Illness: Personal and Clinical Perspectives (v. 2)

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Children of Parents with Mental Illness: Personal and clinical perspectives looks at the insights and experiences of children and adults who have grown up with a parent with mental illness. The personal accounts show the need for professionals to think about all family members in order to meet the needs of the children involved. This highly recommended text is a comprehensive and relevant book for anyone concerned with the mental health and wellbeing of children and families. It is a resource intended for mental health professionals, psychologists and social workers. The personal narratives are complemented by chapters written by clinicians and practitioners. These chapters offer well-researched and current information in the area of the authors’ expertise. Issues covered include: • the genetics of mental illness • talking with children to allay anxiety and give age-appropriate information • assessment of children in crisis • the value of peer support activities • the needs of children placed in out-of-home care • cultural considerations in understanding mental illness • how our mental health care can fail the children of parents with mental illness

Vicki Cowling, a social worker and psychologist, is the editor of a previous, groundbreaking book in this series, Children of Parents with Mental Illness (ACER Press, 1999).

ISBN 0-86431-473-6

9 780864 314734

Australian Council for Education Research

Children of Parents with Mental Illness 2 PERSONAL AND CLINICAL PERSPECTIVES

Edited by Vicki Cowling

Some of the contributors have international reputations in their specialist areas, several are participants in the national Children of Parents with Mental Illness (COPMI) Project as members of the reference or consultation groups, and some are adult children of a parent with mental illness.

Children of Parents with Mental Illness 2

PERSONAL AND CLINICAL PERSPECTIVES

PERSONAL AND CLINICAL PERSPECTIVES

Children of Parents with Mental Illness 2

Edited by Vicki Cowling

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Children of Parents with Mental Illness PERSONAL AND CLINICAL PERSPECTIVES

Edited by Vicki Cowling

ACER Press

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First published 2004 by ACER Press Australian Council of Educational Research Ltd 19 Prospect Hill Road, Camberwell, Melbourne, Victoria, 3124 Copyright © 2004 Vicki Cowling All rights reserved. Except under the conditions described in the Copyright Act 1968 of Australia and subsequent amendments, no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the written permission of the publishers. Edited by Renée Otmar, Otmar Miller Consulting, Melbourne Cover and text design by Polar Design Printed by BPA Print Group National Library of Australia Cataloguing-in-Publication data: Children of parents with mental illness 2 : personal and clinical perspectives. Bibliography. Includes index. ISBN 0 86431 473 6. 1. Children of the mentally ill - Australia. 2. Mentally ill - Australia. I. Cowling, Vicki. II. Australian Council for Educational Research. 362.20854 Visit our website: www.acerpress.com.au

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For Max and Sam ‘Now here is my secret. It is very simple. It is only with one’s heart that one can see clearly. What is essential is invisible to the eye.’ (the fox to the little prince) The Little Prince, Antoine De Saint-Exupéry (Wordsworth Classics, 1995)

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Contents Contributors

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Foreword

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Preface

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Acknowledgements

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Chapter 1

Alice

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Genetics: scientific, social and ethical issues

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Chapter 2

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Understanding and explaining the genetics of mental illness David A. Hay

Early years to adolescence

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Chapter 3

Infants of mothers with mental illness Anne Sved Williams

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Chapter 4

Talking with children whose parents experience mental illness Adrian Falkov

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Chapter 5

On adolescence and having a parent with mental illness Graham Martin and Tracey Kay

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Personal accounts

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Chapter 6

Miriam’s story Miriam Carr

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Chapter 7

Finding beauty Mikhaela Delahunty

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Chapter 8

In a daughter’s voice—A mental health nurse’s experience of being the daughter of a mother with schizophrenia Kim Blair

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A psychoanalytic perspective Chapter 9

Who am I? ‘Madness’, my favourite pop group, split up a long time ago Frances Thomson-Salo

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Children away from home

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Chapter 10

Listening to the child and structuring a future for children placed in out-of-home care who have a parent with a mental health issue: the Royal Children’s Hospital Stargate program Marell Lynch and Jolyon Grimwade

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Chapter 11

Permanent placement of children of parents with mental illness 131 Janet Allen

Chapter 12

Issues relating to long-term, out-of-home care for children of parents with mental illness Sonia Russell

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Cultural considerations

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Chapter 13

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Cultural considerations in understanding parents with mental illness and their children Guy Coffey and Wendy Fromhold

You’re not alone—peer support

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Chapter 14

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Peer support activities for children and young people who have a family member with mental illness Vicki Cowling, Rose Cuff, Jennifer Luntz and Katharina Verscharen

A moral loophole

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Chapter 15

How we fail to care for children of mentally ill parents— Psychological revisionism in child mental health care George Halasz

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Appendix 1

Hypothetical David A. Hay

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Resources

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Index

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Contributors Alice Alice is 11 years old and in Grade 5. She has grown up with a mother who experiences mental illness, a caring dad and a younger (sometimes annoying) brother. Alice plays basketball and enjoys reading and escaping with Star Trek.

David A. Hay Professor of Psychology C u r t i n U n i v e r s i t y o f Te c h n o l o g y PO Box U 1987, Perth 6845, Western Australia [email protected]

David Hay has worked in the area of behaviour genetics for 35 years. In 1992, he designed, and in the following year implemented, the first Australian research project concerning children of parents with mental illness. David has much experience in counselling families about genetic risk factors for mental illness. David is a member of the Reference Group for the national Children of Parents with Mental Illness (COPMI) project.

Dr Anne Sved Williams D i r e c t o r, H e l e n M a y o H o u s e S e r v i c e s a n d P s y c h i a t r y, W o m e n ’s a n d B a b i e s D i v i s i o n , W o m e n ’s a n d C h i l d r e n ’s H o s p i t a l , A d e l a i d e C l i n i c a l S e n i o r L e c t u r e r, U n i v e r s i t y o f A d e l a i d e 210 Melbourne Street, North Adelaide 5006, South Australia [email protected]

Anne Sved Williams trained in family therapy at the Ackerman Institute in New York, and in psychiatry. Her major work foci have included perinatal and infant psychiatry, and general practitioner training.

Dr Adrian Falkov Department of Psychological Medicine T h e C h i l d r e n ’s H o s p i t a l W e s t m e a d Locked Bag 4001, Westmead 2145, New South Wales a d r i a n f @ c h w. e d u . a u

Adrian Falkov is a child psychiatrist based at the Children’s Hospital Westmead in Sydney. He has a longstanding interest in children’s vii

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understanding of parental mental illness, and the links between parenting, parental psychiatric disorder and child maltreatment. He has experience in professional training on the impact of parental mental illness on children and in improvement in services, based on work in the United Kingdom and Australia. Adrian is a member of the Reference Group for the national COPMI project.

Graham Martin P r o f e s s o r o f C h i l d a n d A d o l e s c e n t P s y c h i a t r y, U n i v e r s i t y o f Q u e e n s l a n d M e n t a l H e a l t h C e n t r e , K F l o o r, R o y a l B r i s b a n e H o s p i t a l Herston 4029, Queensland [email protected]

Graham Martin is Clinical Director of the Royal Children’s Hospital and Health District Child and Youth Mental Health Service, in Brisbane. He is also National Project Advisor for the Australian Network for Promotion, Prevention and Early Intervention for Mental Health (AusEiNet), a member of the Reach Out! National Advisory Board, the LifeForce Advisory Board, the Evaluation Working Group for MindMatters, and the National Media and Mental Health Group.

Tracey Kay BA BSocWk(Hons) R e s e a r c h A s s i s t a n t , D e p a r t m e n t o f P s y c h i a t r y, T h e U n i v e r s i t y o f Q u e e n s l a n d

Tracey attained a Bachelor of Social Work with Honours and a Bachelor of Arts (Psychology) at The University of Queensland. She has worked in the youth, community development and social research sectors, and is currently engaged in the evaluation of the Children of Parents with Mental Illness (COPMI) project.

Miriam Carr Miriam is a university student who lives at home with her parents and younger brother; her sister lives away from home. Miriam’s mother and sister both have bipolar disorder. Miriam’s life experiences have made her the person she is today, and she hopes one day to work in psychology or nursing.

Mikhaela Delahunty Mikhaela is 19, and is studying journalism at La Trobe University. Her ambition is to be a political correspondent or a fashion editor! Mikhaela lives at home with her grandparents, Maureen and Tom, who say she drives them crazy. Mikhaela thinks she keeps them young. Mikhaela is surrounded by great people, and the best family—especially her mum and her grandparents.

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Kim Blair C/– Nursing Sciences PO Box 6811, Cairns 4870, Queensland [email protected]

Kim is the eldest daughter of a woman with schizophrenia, and a mental health nurse of nearly 20 years’ experience. Kim lives in a tropical paradise in Far North Queensland with her husband, son and lively Jack Russell terrier.

Frances Thomson-Salo R o y a l C h i l d r e n ’s H o s p i t a l Flemington Road, Parkville 3052, Victoria [email protected]

Frances Thomson-Salo is a psychoanalyst, and Senior Lecturer in the Graduate Diploma/Masters in Infant Mental Health program, The University of Melbourne.

Marell Lynch Senior Child Psychotherapist R o y a l C h i l d r e n ’s H o s p i t a l M e n t a l H e a l t h S e r v i c e 50 Flemington Street, Flemington 3031, Victoria [email protected]

Marell Lynch began her career as a social worker in residential adolescent services, and worked in Albury, Adelaide and Melbourne in child mental health services. Marell subsequently trained as a family therapist, psychologist and child psychotherapist, and in 2002 implemented the Stargate program for children who were entering out-of-home-care for the first time.

Jolyon Grimwade C l i n i c a l P s y c h o l o g i s t a n d L e c t u r e r i n P s y c h o l o g y, V i c t o r i a U n i v e r s i t y Box 14428 MCMC, Melbourne 8001, Victoria [email protected]

Jo Grimwade worked in child mental health services in Albury, Adelaide, the Riverland, Melbourne and Ballarat, as a psychologist and family therapist, prior to taking up his teaching position in the post-graduate Clinical Child Psychology program at Victoria University.

Janet Allen P r i n c i p a l O f f i c e r, A d o p t i o n a n d P e r m a n e n t C a r e C e n t a c a r e C a t h o l i c Fa m i l y S e r v i c e s 576 Victoria Parade, East Melbourne 3002, Victoria

Janet Allen is a social worker with over 30 years’ experience in permanent care, adoption, child protection, and child and family services, as a teacher, worker and service manager.

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Sonia Russell [email protected]

Sonia Russell is a clinical psychologist, now in semi-retirement, with many years’ experience working in clinical and residential settings, providing services to children and families linked to the child welfare sector.

Guy Coffey Senior Clinical Psychologist W e r r i b e e - M e r cy M e n t a l H e a l t h P r o g r a m P O B o x 2 0 8 3 , Fo o t s c r a y 3 0 1 1 , V i c t o r i a [email protected]

Guy Coffey is a senior clinical psychologist and a clinical supervisor at the Victorian Foundation for Survivors of Torture, and a clinical psychologist in the Post-Traumatic Stress Disorder (PTSD) Program, Veterans’ Psychiatry, at the Austin and Repatriation Medical Centre. Guy’s interests include the mental health of asylum seekers and refugees, the provision of psychological treatments within public psychiatric facilities, and the treatment of posttraumatic conditions.

Wendy Fromhold Occupational Therapist and Manager W e r r i b e e - M e r cy M e n t a l H e a l t h P r o g r a m P O B o x 2 0 8 3 , Fo o t s c r a y 3 0 1 1 , V i c t o r i a w f r o m h o l d @ m e r cy. c o m . a u

Wendy has worked in clinical and management positions in the adult mental health sector for 14 years. Her work has included managing the ‘Keeping Kidz in Mind’ project, which aimed to encourage adult mental health workers to consider the needs of parents with a mental illness and their children.

Vicki Cowling [email protected]

Vicki Cowling is a social worker and psychologist. Since 1993, she has contributed to research, project and service development, professional education, and publications including Children of Parents with Mental Illness (1999), and the development of a network which includes colleagues in the United Kingdom, United States, Canada, The Netherlands and Sweden. Vicki is a member of the Reference Group for the national COPMI project.

Rose Cuff C o o r d i n a t o r, V i c C h a m p s P r o j e c t Eastern Health Adult Mental Health Service PO Box 135, Ringwood East 3135, Victoria [email protected]

Rose Cuff is an occupational therapist and the mother of three children. Since x

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1995 she has worked to develop services and resources for families in which parents have a mental illness. For the past 6 years this work has occurred in the eastern metropolitan region of Melbourne, where children now have regular access to camps, school-holiday and after-school programs. Rose is also involved in education and training for service providers, and is a member of the Reference Group for the national COPMI project.

Jennifer Luntz Alfred Child and Adolescent Mental Health Service 2 n d F l o o r, 9 9 9 N e p e a n H i g h w a y, M o o r a b b i n 3 1 8 9 , V i c t o r i a [email protected]

Jennifer Luntz is a social worker who has been working in Child and Adolescent Health Service (CAMHS) for 26 years. Jennifer has a longstanding interest in the plight of children who have a parent suffering with a mental illness, and is a Professional Advisor member of the National Consultation Group for the COPMI project.

Katharina Verscharen C o o r d i n a t o r, M e n t a l H e a l t h P r o g r a m s a n d C o u n s e l l i n g Te a m Yo u t h S e r v i c e s S h i r e o f Ya r r a R a n g e s 2 1 6 – 2 1 8 M a r o o n d a h H i g h w a y, L i l y d a l e 3 1 4 0 , V i c t o r i a k . v e r s c h a r e n @ y a r r a r a n g e s . v i c . g o v. a u

For the past 17 years, Katharina has worked with young people and families, including case management, counselling, development and implementation of programs, and facilitation of groups including parents who have a mental illness, and peer support programs for young people.

Dr George Halasz 30 Burke Road, East Malvern 3145, Victoria [email protected]

George Halasz is a child and adolescent psychiatrist and Honorary Senior Lecturer in the Department of Psychological Medicine at Monash University. His most recent book, prepared as co-author/co-editor, is Cries Unheard: A new look at Attention Deficit Hyperactivity Disorder, published by Common Ground in 2002.

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Foreword This is a rich and valuable book dealing with the issues faced by children of parents with a mental illness. It covers, in its sensitive and in-depth contributions, issues as broad ranging as the meaning of genetic factors, infant–parent relationships, first-hand accounts, and descriptions of important intervention programs. The chapters challenge any simplistic view, and highlight the complex personal and social experiences of children and young people who have parents with an illness. Child protection, separation and visiting, as well as the adaptive processes of groups sharing their experiences, are all described. The expertise of all contributions provides an enormously helpful resource for anyone addressing these complex issues. The editor and authors write from backgrounds of great experience in this field. They highlight, through systematic consideration of the literature, experience in clinical work and the wisdom of program implementation, the extent and severity of the problems faced and what can be done to help. More than anything, however, one is faced with the sadness of young people in this setting, their extraordinary courage and resilience, and their vital needs for effective and consistent programs to assist them. As highlighted in this book, these needs are often denied. Yet, these children and young people can benefit enormously from recognition, support and effective interventions. I found this book both exciting and moving. It is an enormously valuable resource for this field, and I strongly commend it to all concerned for the mental health and well-being of children and families. It carries courage, commitment and hope.

Emeritus Professor Beverley Raphael A M , M B B S , M D , F R A N Z C P, F R C P s y c h , FA S S A , H o n M D ( N e w c a s t l e , N S W ) D i r e c t o r, C e n t r e f o r M e n t a l H e a l t h , N e w S o u t h W a l e s , S y d n e y

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Preface Children of Parents with Mental Illness (1999) contributed towards the provision of a context for those working with children and their families. This book takes us one step further, with a focus on personal and clinical perspectives. The book includes the insights and experiences of a child and adults who live with, or grew up with, a parent with mental illness. Their personal accounts clearly show the need for children to belong, to have someone to talk to, and the imperative of thinking of all family members when a parent has a mental illness. These issues are also highlighted in other chapters which address: talking with children, thinking systemically about adolescents, a child’s psychotherapy, placement away from home, cultural considerations and peer support activities. In fact, the themes and issues in each chapter of the book are clearly reflected in other chapters, giving the book a powerful synergy. The experiences offered in the personal accounts are complementary to the chapters written by practitioners, who have a rich and diverse range of experiences, and offer well-researched and current information concerning their areas of expertise. Contributors come from five Australian states, and several are participants in the national COPMI* project, as members of the Reference Group or the National Consultation Group, or as Evaluators. The implemention of the COPMI project in 2001 demonstrates the persuasive effect of the voices of parents, of those who grew up with a parent with mental illness, and practitioners, as well as available evidence from research and evaluation.

An outline of the book Parents and families thinking of providing alternative care for their children are often concerned about the risk children and young people might face of inheriting mental illness. The complex and inter-related scientific, social and ethical issues of the genetics of mental illness are outlined in the second chapter, adding a potent dimension to the material in later chapters which describe long-term, out-of-home care for children. The following four chapters will inform those working with mothers and their infants, children and young people: xv

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• The ways in which different psychiatric disorders might affect infants is described in detail by Anne Sved Williams, with useful strategies suggested for effective management of mother and infant. • It is now well accepted that talking with children, both to allay anxiety and give age-appropriate information, is an important component of working with parents with mental illness and their children. Adrian Falkov outlines the rationale for speaking with children, emphasising the importance of engaging parents in the process and setting out the steps of the ‘how’, ‘who’ and ‘when’ of this aspect of working with families. • A thought-provoking ‘case study’ of a young person and his family reminds us of the need to consider sensitively the roles and responsibilities an adolescent might have while negotiating his/her own developmental issues, such as caring for younger siblings, going to school and forming and sustaining relationships. Graham Martin and Tracey Kay urge us to think and work systemically, and to offer interventions which promote mental health through education and support. • Frances Thomson-Salo offers a moving account of a child’s three years in therapy, and provides a glimpse into his inner world as he grows towards belonging in his adoptive family. By mid-teens he is also again part of his birth family. On occasion, state welfare authorities, Children’s Courts and Family Courts determine that children should live somewhere other than with their parents. Marell Lynch and Jolyon Grimwade describe a project established to provide assessments for children removed from their families, and support in their transition to foster care. They also discuss key issues and steps to include in assessment. The significant challenges involved in meeting the needs of children placed in long-term care, their birth parents and their caregiver family are described in detail in the following two chapters by Janet Allen and Sonia Russell: legal issues, rights issues, ethical and social issues all need consideration, with the balancing of these needs at least attempted, if not always achieved. In Australia’s culturally and linguistically diverse community, every family should receive a service response respectful of and sensitive to cultural, ethnic, religious and language origins. The importance of this approach is clearly demonstrated through the case studies in a well-researched chapter by Guy Coffey and Wendy Fromhold. You’re Not Alone (SANE Australia, 2003) is the title of a book prepared in Victoria for young people who have a family member, or other person close to them, with mental illness. The chapter in this section describes peer support programs for children and young people in which they can realise

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that they are not alone and can feel comfortable speaking with others with similar experiences. Two of the authors describe how moved and inspired they are by the children and young people they work with in these peersupport activities. The final chapter of the book argues strongly for maintaining the dimensions of development and a family context in the provision of mental health care, especially to children and young people, rather than abandoning these approaches in favour of those which are behaviourally focused and ‘stripped of meaning and motives’. In the Preface to the first book I suggested there was material for another book—here it is, with others waiting to be written! Vicki Cowling Melbourne, 2003 * The COPMI project (Children of Parents with Mental Illness) is funded by the Commonwealth Department of Health and Ageing and managed by the Australian Infant, Child, Adolescent and Family Mental Health Association (AICAFMHA).

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Acknowledgements This book is a team effort involving the publisher, contributors and editor. Thanks to Joanna Goldsworthy and Anne Peterson at ACER Press for creating the opportunity for this second book, which focuses on children of parents with mental illness and their families. My thanks to them also for support and encouragement as deadlines for submission approached and passed! Of course, there would not be a book without the contributors. My thanks to everyone involved for accepting the invitation and preparing a chapter within the constraints of time and other commitments. The book is testament to contributors’ individual dedication and expertise, and a collective wish to be part of a volume that will take us another step forward. I would like to make a special acknowledgement to Alice, Miriam, Mikhaela and Kim for their personal perspectives. All were involved in some way in presentations at the ‘Holding it all Together’ conference, held in Melbourne in April 2002, the first national conference for all involved in meeting the challenges for children and families where parents have a mental illness. Those who heard those presentations were moved and inspired, and this book takes their words to a much wider audience. I would also like to warmly acknowledge the assistance of Danielle Forer and Matt O’Brien from the Centre for Adolescent Health, Royal Children’s Hospital, Melbourne, in contributing to the completion of certain chapters.

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CHAPTER

Alice

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My mum had depression. During my Grade 2 year it was bad, ’cause I didn’t really know what was going on. Mum was always grumpy, and I wasn’t allowed to go to any of my friends’ houses, they weren’t allowed to ours and, to put it simply, it was frustrating. Sometimes when Mum and Dad were fighting it got a bit scary. I would sometimes go to my room and other times I would try to stop them. The best thing for me was learning that I wasn’t the only kid that this happened to. My teacher says that you can learn from all sorts of stuff, so I guess what I’ve learned from this is that not everything can go the way we want it to. We should just take life the way it comes, and not waste too much time daydreaming. That’s all from me . . .

Alice

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Genetics: scientific, social and ethical issues

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CHAPTER

Understanding and explaining the genetics of mental illness

2

D AV I D A . H AY

The Human Genome Project has created more awareness in the general community of the potential of genetics. This is especially true in the case of mental illness, since: • the stigma about mental illness in the community is declining, and for the first time some people are becoming aware of the extent of mental illness in their family: ‘Uncle Jim did not just die young, but had chronic schizophrenia and committed suicide’ • changes have taken place in the care of people with mental illness outside institutions, and better treatment outcomes have increased their opportunities to have children • a lower number of ‘healthy’ children available for adoption indicates a need to consider ‘special needs’ children, a label which includes those from families with mental illness. Thirty years ago, there was no acknowledged role for genetics in mental illness. Practitioners were taught about the ‘schizophrenogenic mother’ whose poor care of her children caused the illness (Ridley, 2003). They passed on this information to families, causing stress and resentment which is still so strong in many families from that time. The pendulum has now swung the other way—and perhaps too far. I have seen too many families over-estimate both the genetic risk and the clinical utility of many of the recent developments in psychiatric genetics. This chapter seeks to give a balanced perspective on what is a very complex issue, scientifically, socially and ethically. The ethical issues are well covered in the 1998 Report of the Nuffield Council on Bioethics. This chapter focuses more specifically on how to determine the genetic risks when a child has a family history of Understanding and explaining the genetics of mental illness

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mental illness, and some of the social issues that arise in counselling such a child or his/her family. The first thing to realise is that there are two types of genetics and genetic information that families may want to know about. Until recently, most psychiatric genetics was based on quantitative genetics. No specific genes were identified; rather, a genetic propensity was identified, with the evidence often derived from twin and adoption studies. These are often referred to in the literature as ‘polygenes’ (poly is Greek for ‘many’). So there were thought to be many unidentified genes usually of small effect, plus some environmental influences on mental health. From these, recurrence risks could be derived—if you were one of four brothers and sisters, one of whom had a diagnosis of schizophrenia, while the other two had no problems, what was the risk to you and your children? Such statistics are, at best, only risk indicators based on data collected from many families who have lived through this situation and from expectations gleaned from genetic modelling. However, people do not want statistics on probabilities. If they are at risk, they want to know whether they do or do not have the gene that causes a particular mental illness. (Strictly speaking, however, it is not the gene, but the particular allele, or alternative form of the gene, that provides such indicators. Everyone has the gene, but do we have either the ‘good’ or ‘bad’ version.) This aspect of genetics is the province of molecular genetics, which reads the individual’s DNA to find whether the gene that places a person at risk is present. A non-psychiatric example: Most women are aware that breast cancer can run in families, and some women have such an extensive family history that they are concerned about their risk (the quantitative approach). Breast cancer is one of the few situations in which routine care has progressed to the molecular approach, with two specific breast cancer genes regularly being screened in women considered to be at risk. For many families this screening has been successful in alleviating worries about risk or identifying the need for aggressive monitoring or intervention in particular individuals. The reason for this particular example is that breast cancer is one of the very few common diseases in which molecular genetics is part of routine care. Yet, families often have the expectation that when they read of yet another ‘breakthrough’ in the molecular genetics of mental illness, the next step will be a routine genetic test as in the case of breast cancer. This misconception is fuelled in the popular media. It was in 1988 after the first and not-yetreplicated (McGuffin, Owen & Gottesman, 2002) report of an association of schizophrenia with a gene on chromosome 5 that some of the media trumpeted the arrival of a prenatal genetic test for schizophrenia. We are still 6

Children of Parents with Mental Illness

Personal and Clinical Perspectives

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waiting for that test, and it is of concern that the 1998 Nuffield Report on Psychiatric Genetics discussed this issue in terms of not ‘if’ but ‘when’ it will be a reality. Professionals need to make two things clear to families: Firstly, even with breast cancer, it is only a small minority of families who benefit from such genetic testing. Genetic testing is of little help to most families in which there are just one or two cases of breast cancer. We call these the ‘sporadic’ cases. Secondly, while genes are being found for mental illness (as described later), these are very much more part of research than of clinical care.

The quantitative approach—How much of mental illness is inherited? The traditional view of the determinants of mental illness has been the diathesis-stress model. While this title sounds formidable, it is easily explained to families as the ‘genetic and environmental profit-and-loss account’. What are the vulnerabilities and what are the assets? The latter are important as they are so often ignored. Coming back to the earlier example of a family with four siblings in which one is affected by schizophrenia. Everyone tends to dwell on the affected sibling, not on those who do not have schizophrenia. If there were just two siblings and one had schizophrenia, the risk to another sibling would be 7–9 per cent. Having two other siblings who are unaffected reduces this risk figure considerably—there must be other genes that reduce the risk of mental illness in this particular family. Tables of the risk figures can be found in texts such as Gottesman (1991) and Faraone, Tsuang & Tsuang (1999). But, as we shall see shortly, deciding who is ‘affected’ in an extensive family tree is not that easy. The statistic that is usually quoted in genetic studies is the heritability of a disease or condition. Essentially, heritability summarises the percentage of differences between individuals in those behaviours due to their genes, and conversely the percentage due to their environment. Note that heritability is not able to be specified for individuals, but only about the population in general. The actual calculation of heritabilities from twin and relatives is complex, and Levy & Hay (2001, chapter 2) provide a worked example. But the best estimates of heritability for the various psychoses are around 80 per cent (Cardno et al., 1999), with a lot more variability in depression and the anxiety disorders (McGuffin, Owen & Gottesman, 2002).

Three issues that complicate family history Both quantitative and molecular approaches are limited by three problems common to all psychiatric diagnoses and the taking of family history. Understanding and explaining the genetics of mental illness

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The definition of ‘affected’ In drawing up a family tree, the definition of just who in the extended family should be counted as ‘affected’ is influenced by much more than the ambiguities which often arise in psychiatric diagnoses. For example, in a family with a history of schizophrenia, the question of what to do about the individual with a diagnosis of bipolar disorder raises the unresolved question of whether one inherits a liability to all psychoses or to specific ones. In my experience, there are some families in which the disorder is specific, and others in which it is much less so. One could look for cases of schizoaffective disorder, for members with diagnoses of major depression and for those whose diagnoses change between admissions. An even more difficult question is that of the ‘schizophrenia spectrum’. The nature of quantitative genetics and the diathesis-stress model is such that there will be some relatives who do not meet the criteria for an Axis 1 disorder but who nevertheless are not far from it. They may have a personality disorder, they may have a fascination with strange religious cults or (my favourite example) ‘he never spoke to anyone for 27 years and ran into the bush when anyone came near the property’. Obviously, calling such people ‘affected’ for the purposes of a pedigree is difficult and requires a good knowledge of current arguments and research evidence within psychiatric genetics (McGuffin, Owen & Gottesman, 2002).

Identifying phenocopies The term ‘phenocopy’ refers to individuals who have the disorder but not the gene. To return to our earlier non-psychiatric example of breast cancer: This disorder is sufficiently common that some women in an extended family with a history of breast cancer will develop the disorder even without the gene; that is, they are phenocopies. In psychiatric disorders, brief reactive psychosis may be an example of a phenocopy. Or a parent may suffer significant depression but only after their young adult offspring is diagnosed with schizophrenia. Probably the most difficult situation is that of druginduced psychosis, as the evidence is still ambiguous as to whether this is a uniquely environmental trigger or is more likely in individuals with a family history of psychoses. The arguments are complex either way, and illustrate that family history is at the mercy of questions research has not yet answered.

Age of onset While schizophrenia used to be called ‘dementia praecox’ and was considered to be a disorder common in young men, the situation is more complex and one which often unsettles family members when they seek advice about genetics. In his Table 6, Gottesman (1991) shows that at the age 8

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of 40 there is still a significant proportion of women, in particular, who are yet to have their first episode of schizophrenia. This is not the forum in which to argue about these data—which are old but reliable population-based statistics from the United Kingdom—or the relationship of schizophrenia to hormonal changes preceding menopause. We need to change from thinking about ‘who is affected?’ to ‘who is still in the age range that they may still have their first episode?’

How far has molecular genetics advanced? The simple and blunt answer is that scientists no longer believe that we shall ‘find the gene’ for such disorders as depression or schizophrenia. This may have been the ambition a decade ago, but today we know there are many genes involved. To take just one example, the N-methyl-D-aspartate (NMDA) receptor, which is involved in memory storage. Research groups using families with schizophrenia from countries as diverse as Iceland, Ireland, Russia, the Azores and the United States have identified some seven genes with very specific functions in this system alone which are associated with increased risk of schizophrenia. Unravelling just what these genes do may give unique insights into the medications for schizophrenia, but may make it even less likely that we are ever going to have a genetic ‘test’ for the illness. An issue about which we hear little in the hype about genes for mental disorders is that of ‘penetrance’. This term refers to people who have the gene but never develop the disorder. To take the most obvious example, if one identical twin has schizophrenia, the chances of the other developing schizophrenia is only about 48 per cent (Tsuang, 2000). This puts the potential of a genetic test in real perspective. If one can have identical genes but only have some 50:50 risk of developing schizophrenia like your twin, then the ethics of saying you are at risk becomes doubtful.

What are the main information issues for families? Counselling about mental illness is never just about genetics. Table 1 gives three very common examples of how questions about genetics actually become part of a much more complex agenda. It may be the Child Protection issues that can loom large in the mind of any parent with mental illness, or it may be that whether one’s child develops a mental illness in 20–30 years time is much less an issue than caring for one’s sibling who currently has schizophrenia—in such cases, the Sibling group in the Mental Illness Fellowship is a great resource. While permanent care families (in the adoption and permanent care sector of child welfare) may be worried about the chances of the child becoming ill many years down the track, there are much more immediate concerns, one of the most common being access visits Understanding and explaining the genetics of mental illness

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by the biological parent(s) if they are mentally unwell. Confidentiality requirements can make it very difficult to acquire information about the condition of the visiting parent, but the impact on the child may last some months.

Table 1: Examples of the ‘hidden agenda’ in counselling about genetics (a) Clare and Paul come to see the counsellor. Both have schizophrenia, which is not that well managed. They frequently go off their medication and end up in hospital. They want to know the chances of having a child who develops schizophrenia. Clare and Paul need to realise that the state Child Protection authorities may be monitoring them very closely. The first solution is to work on improving their compliance with medication and other interventions so that they can provide good parenting. (b) Clare and Paul’s child is up for adoption/permanent care. The prospective adoptive family want to know more about the genetic risks and what they can do to reduce the chances of the child developing psychosis. There are much more immediate priorities, such as who the adoptive family plans to tell about why this child is coming into their family and what arrangements there are for access by Clare and Paul. (c) Paul’s sister and her partner come to speak to you about the chances of their child being like Paul, her only sibling. While there may be some elevated risk of their child having schizophrenia, there is a much greater chance they will be contributing to the care of Paul, given the problems in managing his mental illness. This they need to discuss.

While these are non-genetic issues, there are two key questions for which parents often want answers:

When can we expect the see the first signs of mental illness? The most reassuring answer is to quote the famous study by Fuller-Torrey et al. (1994) of identical twins discordant for schizophrenia or bipolar disorder. Even with this unique capacity for close comparison, there were very few families who had identified a clear difference before adolescence and the

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usual age for the onset of prodromal signs. There certainly are reports of earlier differences in everything from social behaviour to reading ability, but these tend to be statistical differences between two groups of children, rather than anything that would warrant a formal prediction for an individual child. The situation is complicated by factors in the child and in the parent. The child may have had much experience of adults with mental illness and may be imitating their behaviour or reacting to it. If their ill parent rarely interacted with them, then there may well be some limitations in the children’s social behaviour towards others. At the same time, a parent who grew up with an ill parent may have less knowledge of ‘normal’ child development. I remember a mother whose own mother had experienced psychosis finding it difficult to believe that her three year old’s ‘imaginary friend’ was part of normal development and not the first signs of psychosis!

What can we do to reduce the risk? Our knowledge of environmental risk factors is remarkably poor, and includes such factors as pregnancy and delivery complications (Tsuang, 2000) which most would not regard as environmental. Both Tsuang (2000) and Gottesman (1991) differentiate between what may be an environmental risk factor across the entire population and one which may only come into play in the presence of a genetic predisposition. So while a dysfunctional family environment does not ‘cause’ schizophrenia in the general population, in the Finnish Adoption Study of children at high risk for schizophrenia, it was associated with schizophrenia spectrum disorders. Gottesman (1991) cites another example. While the relationship of some illicit drugs to psychosis remains a matter of scientific debate for the population at large, some such drugs (including amphetamines, LSD and PCP) do involve the same dopamine pathways that have been implicated in schizophrenia. So the person with a family genetic history of psychosis may be at much higher risk than their peers due to exposure to these drugs. To these two I would add two other closely related questions:

Just what is he/she at risk of? While the family thinks of psychosis and often the most negative end of that with chronic disability, the reality can be quite different. The person at risk may have some of the schizophrenia spectrum symptoms or hypomania, so that they are ‘different’, but still capable of living a good life. Even if the person does become psychotic, genetics does not appear to be able to predict the severity of the illness. While another relative may have had an unremitting illness, the next family member diagnosed may have one episode and thereafter manage well.

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What will mental illness and its prognosis be like when he/she grows up? Especially when discussing the risks to children, it is important to reflect on what the care and prognosis was like 20–30 years ago and what it will be like in 20–30 years’ time, when the children are in the age group considered to be at risk. Already the early identification of symptoms and early intervention programs are improving the prognosis and reducing the psychosocial impact of mental illness. While it is important not to glamorise mental illness or to downplay its impact on the individual and the family, it is equally important to present a balanced view, and not one reflecting just a chronically ill relative or the more sensationalised media representations of mental illness. And, yes, I have been asked if the 7-year-old a couple was thinking of adopting would murder them in their beds! We now have two extensive studies in Australia which have shown ‘dangerousness’ to be more often associated with comorbid drug use than with psychosis per se.

Explaining genetics to children Answering questions from children as blunt as ‘Will I get mad like Mum?’ is one of the most difficult ones practitioners have to face. Yet, it is important not to lie to children by giving them false reassurance. In my experience, children are concerned about this and answers like ‘You are too young to worry about this’ or ‘You’ll be right’ do little to help the child trust that adult. Obviously, a detailed explanation of the ‘diathesis-stress’ model may not be appropriate, but it is easy to point out the fact that Dad is not mentally ill, and neither is Mum’s brother, Jim, or that there may have been a particular stressor that made Mum more vulnerable. Information needs to be presented at an age-appropriate level and, especially during adolescence, it becomes important for the young person to differentiate the typical confusion and angst of adolescence (especially when one of your parents has been mentally ill) from the prodromal signs of mental illness.

Who can provide specialised advice? There are very few resources and services that have both the expertise in genetics and genetic counselling, as well as the knowledge of psychiatric genetics, the nuances of diagnoses and the management of psychiatric disorders required to be able to provide a complete service to families. In the United States, the National Coalition for Health Professional Education in Genetics has a comprehensive program on psychiatric genetics for genetic counsellors that is available on its website at www.nchpeg.org, and the United States National Society of Genetic Counsellors has a special interest group on its website at www.nsgc.org. Neither of these excellent websites 12

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come close to the more holistic approach being advocated here, in which genetic information is given along with implications about how the information must be interpreted in terms of the prodromal signs, of how management of mental illness may have changed by the time the child moves into the age at risk, and so on. Without going beyond the basic genetics to probing for the kinds of hidden issues in Table 1, genetic counselling is not providing an adequate service to families.

Genetic risk is a lifetime risk and one that affects every service provider Appendix 1 (page 233) is an amalgam of many of the stories I have heard from families, though hopefully few would have experienced the whole range of traumas described here. What is obvious is that genetic issues come in different forms and at all stages of the child’s development. Therefore, all service providers need to consider the genetic issues that were raised earlier, are being raised now and may arise in the future. Appendix 1 was developed as a way of helping workers from different agencies appreciate the many different perspectives that people bring to this issue. This chapter has only touched on the many complexities and unresolved arguments in psychiatric genetics. Whose job is it to help families through this maze of information, and sometimes misinformation? As in so many aspects of the issues around children of parents with a mental illness, there is the perennial question of it being the ‘other agency’s job’. Should information come from genetic counselling teams, from psychiatric services or hopefully from the two working together? As more young people are born to parents with a mental illness, or become more aware of their family history of mental illness, the need for reliable and sympathetic genetic information can only increase. We need an end to the situation my student Teresa Stevenson (2002) found in her thesis on adults who had grown up with a parent who had psychosis: many had worried for years about genetics, to the extent of deciding neither to have relationships nor children. We can do better than this.

References Cardno, A.G. et al. (1999) ‘Heritability estimates for psychotic disorders’, Archives of General Psychiatry, 56, pp. 162–68. Faraone, S.V., Tsuang, M.T. & Tsuang, D.W. (1999) Genetics of Mental Disorders, New York: Guilford Press. Fuller-Torrey, E., Bowler, A.E., Taylor, E.H. & Gottesman, I.I. (1994) Schizophrenia and Manic Depressive Disorder: The biological roots of Understanding and explaining the genetics of mental illness

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mental illness as revealed by the landmark study of identical twins, New York: Harper Collins. Gottesman, I.I. (1991) Schizophrenia Genesis: The origins of madness, New York: WH Freeman. Levy, F. & Hay, D.A. (eds) (2001) Attention, Genes and ADHD, East Sussex: Brunner and Routledge. McGuffin, P., Owen, M.J. & Gottesman, I.I. (eds) (2002) Psychiatric Genetics and Genomics, Oxford: Oxford University Press. Nuffield Council on Bioethics (1998) Mental Disorders and Genetics: The ethical context, London: Nuffield Council on Bioethics. Ridley, M. (2003) Nature via Nurture, London: Fourth Estate. Stevenson, T. (2002) ‘Exploring the adult experience of growing-up with a parent/s with a serious mental illness’, unpublished Master’s thesis, Curtin University. Tsuang, M. (2000) ‘Schizophrenia: Genes and environment’, Biological Psychiatry, 47, pp. 210–20.

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Early years to adolescence

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CHAPTER

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ANNE SVED WILLIAMS

Parents do the best they can for their children and, as Winnicott (1951) said, most of us will be ‘good-enough’. Generally, people parent as they were parented themselves, or sometimes the exact opposite if there is substantial dissatisfaction with their childhood (Byng-Hall, 1995). Good-enough parents provide appropriate physical care, which includes: • adequate nutrition • clothing and shelter • protection from infection and other physical environmental hazards—fire, cold etc. In order to thrive, human infants also need appropriate emotional care, including: • a secure, predictable emotional base with one or more people who provide consistent and appropriate attention to the infant’s external and supposed internal world; for example, pain and need for connectedness • protection from abuse and violence. The chances of providing good parenting are optimised by having a supportive partner, a close extended family and friendship network, an adequate income with some financial security, a healthy pregnancy and good mental health, all within the context of a stable society. In general, this situation is more likely to be present when the parents themselves have been offered similar circumstances. For parents with mental illness, the challenges can be daunting, as there can often be a ‘domino effect’ between the illness and some of the other factors Infants of mothers with mental illness

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mentioned above. For instance, a recurrent mental illness can cause substantial disruption to employment, so that financial stability is undermined and, as mental illnesses may run in families, not only has the sufferer perhaps had a less than adequate experience of parenting him/ herself, but she/he may have little family support. Early anatomical changes and behavioural patterns, once set down, tend to set the course for life development. Thus, the area of perinatal and infant mental health is rapidly growing as the importance of the early years becomes more and more evident. There is a profusion of literature which cannot all be adequately referenced or summarised in this chapter, but the bibliography and references will guide further reading.

Which mental illness? Mental illness can be defined either by the absence of mental health and wellbeing, or else in terms relating to the presence of an illness. Conditions such as schizophrenia, bipolar mood disorder or major depression have been defined as Serious Mental Illness (SMI). As more is discovered about the long-term effects on brain formation, personality and relationship patterns by the interaction of nature and nurture in the first three years of a child’s life, there is growing interest in the effects of conditions that some would not normally regard as SMI. In particular, this would include anxiety and depressions of lesser intensity, and also some personality disorders, particularly of the borderline type. Because of their importance to infants, an overview of the effects of these is included. Substance abuse is another controversial topic; although it is not always regarded as a mental illness, the effects on infants can be so profound that discussion of these is also included in this chapter. Problems such as obsessive-compulsive disorder and eating disorders potentially can also exert effects, but due to space limitations cannot be covered in this chapter (see Stein et al., 2001; Patel et al., 2002).

Environmental effects on infant brain and personality development In the last two decades of the 20th century, a compilation of research using an array of techniques and explorations from many different fields of biological sciences began to reveal the profound effects of experience on the development of the brain in early life. In time it is likely that the effects of maternal mental state on the foetus will be clarified, and appears highly likely to be of profound importance. Early work in this field (Kofman, 2002) reveals that maternal anxiety raises cortisol levels in the mother, which on crossing the placenta begin to influence stress response and perhaps brain growth in the foetus. This research is still at the ‘watch this space’ stage. 18

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Much more is known about the interaction between the infant’s potential; that is, the genetic heritage, and the early life experiences the infant undergoes from birth. Parenting that is attuned (from any ‘parental figure’—mother, father, grandparent, consistent caregiver) appears to promote optimal development of the infant’s brain. Not only is there measurably faster growth of brain tracts, but the development of connections between neurones (synapses) is likely to be more prodigious. The type and variety of neurotransmitter; that is, the chemical messenger which sends signals from one nerve cell to the next, may also be profoundly influenced by the quality of parenting. This brain development is highly significant, as an infant’s brain has almost reached adult size by the age of 2 years. It is highly likely that the brain substrate laid down at this stage will alter much less once these formative years are past, although substantial re-modelling is still occurring in the brain during adolescence. Again, this research is still at an early stage, and some decry making too early a judgement about the effects of experience and/or the assumptions that the changes to the brain from this time of life are more significant than others. There is, however, agreement on the lasting nature of early life experiences, whether this is mediated only through brain structure and function or through other mechanisms. Thus, there is no doubt that ensuring optimum development at this vital time will have benefits for a lifetime, particularly where there is continuation of appropriate care (Shonkoff & Phillips, 2000).

Mothers as parents As statistics from the Australian Institute of Family Studies show, care in our society is still mostly provided by the mother, even when both parents are in paid work (Dempsey, 1997). Thus, in this chapter it is assumed that the woman with SMI is the principal caring parent. Very little is written about the father with mental illness who is the primary caregiver to an infant. Sometimes, a woman with SMI may provide adequate parenting, but this is not always the case. Others in her family system may share in her parenting, and it is clear that they play a vital role in normal infant development. Sadly, women with SMI often have an inadequate support system from which other caregivers can emerge.

Attachment Human infants are ‘hardwired’ to engage in social relationships. Their cries and mannerisms are designed to engage the attention, care and concern of those close around them (Trevarthen & Aitken, 2001). Their carers, if sensitive, are attuned to the nuances of the infant’s communication, and will attend appropriately to an infant’s distress. They will also enhance their early Infants of mothers with mental illness

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communication by talking, mimicking and elaborating, with touch and eye gaze pivotal as well. The ways in which adults relate to a young infant are made up of countless moment-by-moment events which follow relatively predictable patterns in each interaction. Over time, the infant learns how each significant adult in his/her environment is likely to behave towards her/him. As well as learning that he/she can regulate his/her own emotions, the infant will also learn patterns of inter-relationships consistent with the modelling shown to him/her. An infant’s identity and ability to understand that another can think and feel is also formed by these experiences. The interactional style will form the basis of attachment—for a wonderful account of the development of Bowlby’s theory, read Karen (1998). There are four types of attachment: 1. Secure. If the interaction is sensitive and attuned to the infant’s needs, the infant can develop a secure attachment, with trust in the consistency of the parent’s response. Thus, an infant learns in the first year of life that the parent helps to contain the extremes of emotion such as despair on perceived abandonment, and gradually the infant internalises the ability to bring emotions under control. This, in turn, allows a secure base from which the infant can explore the world. Good parenting provides the infant with an appropriate balance between security and exploration. 2. Anxious–resistant. When the parent is anxious or depressed and cannot reassure the infant appropriately, the infant may find it hard to be reassured and will cling to the mother at reunion. 3. Anxious–avoidant. Some parents pay less attention to comforting their infants, either because they are too absorbed in their own issues or because their own models of response from their parents were not attuned—they may consciously promote notions of ‘independence’ at this developmentally inappropriate age. These infants learn by the age of one year to waste no energy in seeking comfort, and will not approach the parent at reunion. 4. Disorganised. Traumatised children may not have a consistent pattern of seeking comfort. They know that the same person who can provide comfort is also the seat of pain, either because that person is directly abusive to the infant or perhaps the object of domestic violence. The infant cannot work out whether to approach or run away, and may give a mixture of both behaviours simultaneously. The specific symptoms of each type of mental illness will have some impact on the attachment style of the parent, but there are many variables. Infants’

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attachment styles, learning and general development are so multiply determined that no outcome in particular can be predicted from any one illness. Some authors have indeed looked for and found resilience and competence in the offspring of mentally ill mothers, which may also be apparent in longer-term follow-up (for example, Kauffman et al., 1979; Dahlin et al., 1990).

Parenting with mental illness: Overview of major illness groups and the potential effects on parenting Schizophrenia and schizoaffective disorder Schizophrenia develops in one per cent of all populations, regardless of cultural or socio-economic status. It is a severe illness which affects many important aspects of functioning, and tends to be chronic. Successful parenting is likely to be compromised from pre-conception onwards for women (and men) with schizophrenia. For many years, it was widely known that women with schizophrenia were relatively infertile (Rimmer & Jacobsen, 1976; Nimgaonkar, 1998; Haverkamp, Propping & Hilgeer, 1982). It has been suggested that the social skills deficits of women with this condition reduces the likelihood of them marrying. Certainly, the treatment methods used during much of the 20th century increased the possibility that this group of people would not have children. Living in single-sex hospital wards clearly prevented pregnancies, and the traditional anti-psychotic medications produced an increase in prolactin, with an associated reduction in fertility (Meaney & O’Keane, 2002). The newer antipsychotics generally do not have this effect, and as most women with this illness now usually live in the community, the possibility of conception is somewhat increased (Neumann & Frasch, 2001). In pregnancy there are further problems. There are significantly increased risks for stillbirth, infant death, pre-term delivery, low birth weight and small for gestational age for the offspring of women with schizophrenia (Nilsson et al., 2002), the latter two situations compromising infant development. Bennedsen et al. (2001) found some similar outcomes, and suggested that the increased risk of sudden infant death, in particular, needed to be considered in the context of increased cigarette smoking, substance abuse and psychotropic medication—all of which are more likely in this population. The safety and potential effects on the foetus of psychotropic medication in pregnancy are still uncertain (Committee on Drugs, 2000). In neonates, Schubert, Blennow & McNeil (1996) showed reduced arousal in the offspring of women with schizophrenia, and suggested that there may be a neuro-developmental disorder.

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Thus, even prior to birth, hazards for these infants are substantially increased. The specific symptoms, lifestyles and treatment of the women now also add further risks (Yoshida et al., 1999). The so-called ‘positive symptoms’ of this unfortunate condition include hallucinations, usually auditory, which may describe the woman’s actions or ‘tell’ her how to behave. Delusions are fixed, false beliefs, which may impact dramatically on a person’s life. For instance, if a woman believes that everyone is against her (persecutory delusions), she may closet herself in her home, afraid to venture out. Parenting under these circumstances can be very compromised. Not only will the infant be denied normal day-to-day input from the outside world, but the mother may not even be able to provide the basic necessities of life. ‘Positive’ symptoms are often amenable to medication, but people with this illness often find it difficult to accept that they have an illness, and therefore do not comply with treatment. The ‘negative symptoms’ are usually less responsive to medication, and thus the impact on infants can be significant. Negative symptoms include a lack of drive, energy and motivation. A sufferer finds little joy in the world, may find it difficult to organise her day-to-day life, making infant care difficult. At the fine-tuning level, cueing in to an infant may be difficult, and this will diminish the likelihood of secure attachment. An infant whose mother is withdrawn and does not read his/her signals may develop an avoidant attachment (Riordan, Appleby & Faragher, 1999) or may live in a chaotic world in which other attachment difficulties are noted (Hipwell & Kumar, 1996; Snellen, Mack & Trauer, 1999). The net result of all of these problems is that women with schizophrenia have a much reduced chance of keeping custody of their children (Miller & Finnerty, 1996). Thus, early monitoring, teaching and general interventions are essential.

Bipolar mood disorder (manic depression) Bipolar mood disorder affects 1–3 per cent of the population, and the first presentation of this illness for women is not uncommon when the first child is born. Although only 1–2 in 1000 women will develop this condition postnatally, it causes major disruption when it does appear. An illness episode of this type following childbirth is known as ‘puerperal psychosis’. In those who are vulnerable, symptoms are likely to appear within days of childbirth. The following is a typical picture, with mania first and then depression. A woman will be highly energetic, and find it hard to concentrate on one task, with poor attention span. She sleeps little, may be delusional with elated or irritable mood. Almost all of these symptoms will interfere

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with parenting, and the medications likely to help will go through in breast milk, raising further dilemmas in the care of her infant. It is often the first time that a woman has had this illness, and so the combined pressures of first-time parenting and first-illness episode can place a major adjustment strain on the woman, her partner and all close family. The natural history of the illness is for the manic phase to pass after some weeks, usually to be followed by a profound depression, which untreated can persist for months. The person will now have little energy, disturbed sleep and appetite, no motivation or pleasure in life and a very depressed mood. Suicidal thoughts and behaviours may be an issue. Infanticide is a risk at either mood phase, and is usually associated with delusions. Although the mood changes will eventually settle, recurrences during the woman’s lifetime can be expected in 80 per cent of sufferers, and the risk of relapse with each subsequent pregnancy is usually quoted as about 50 per cent. Effects on infants will vary depending on the symptoms present, the treatment path chosen and the influence of other caregivers. Generally, it is believed that provided safety factors are ensured, infants and mothers benefit by keeping mother and infant together. There are fewer studies of mother–infant interactions in this condition than with schizophrenia, and the studies are not all consistent. While Persson-Blennow et al. (1986) described a more negative interaction in women with this type of condition when compared with normal controls, Hipwell et al. (2000) found that a manic episode of illness was related to secure attachment, whereas psychotic or non-psychotic depressions were related to insecurity. Early in the course of the illness, in the first weeks of the baby’s life, a woman may be so disorganised that she cannot concentrate sufficiently to feed her infant. Others must help her make decisions about the adequacy of care offered her infant, taking into account safety factors. Women with a psychotic illness, whether of this variety, schizophrenic or other, have been known to act on their delusions. In the depressed phase, a mother may also find it difficult to care for her child. In general, the effects on infants of the depressed phase of a bipolar mood swing are like those in other depressions discussed below.

Depression Postnatal depression and its effects on parenting have been studied prolifically in the past two decades. Depression is a lowering of mood, and is often associated with marked anxiety. Depending on the severity, it is usually accompanied by a number of other changes in thinking and behaviour, with other effects on the body. Thus, in severe (major) depression, there is usually

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difficulty in sleeping, whether or not her infant sleeps. There is reduction of appetite, a marked decrease in energy and poor concentration. Women may feel helpless, hopeless and despairing of themselves as mothers. Because of her low mood, which is often associated with irritability, a woman may find herself embroiled in troubled interactions with those close to her, including her partner or extended family. Thoughts or acts of self-harm are a potential hazard, although suicide rates for women with infants are half those compared with women at other life stages (Appleby, 1996). Parenting under these circumstances is often compromised. A woman may not have the concentration to organise herself and her infant. She may lack the energy to mimic her infant, to talk to her/him or to provide extra play and stimulation. She may also be irritable and intrusive, imposing her views on her infant rather than attending to the signals. Not surprisingly, by the age of one year, there are significant effects on these populations of infants (Weinberg & Tronick, 1998). Longer follow-up studies identify further detrimental effects (Murray & Cooper, 1997) which vary with causative factors of the mother’s depression. For instance, if the postnatally depressed mother was sexually abused in her own childhood, there are significant longterm negative effects for the infants (Buist & Janson, 2001).

Substance abuse Substance abuse is growing rapidly in our society. Many people begin to use and abuse harmful substances in their teenage years, when their fertility is at its height, so there are many affected children. Australian rates are high, when compared with many other countries, on consumption rates of alcohol. In 2001, more than 50 per cent of Australians aged 20–29 years had used illicit drugs, and the number of people regularly using illegal substances continues to grow. There is a strong association between substance abuse and mental illness, and in the early 21st century at least 30 per cent of admissions are for people with a dual diagnosis; that is, a mental illness and substance abuse. Clearly, there are implications for parenting at this time. i) Alcohol abuse Foetal alcohol syndrome (FAS). FAS occurs when a woman drinks alcohol during early pregnancy. The minimum amounts which cause this condition are uncertain. It is clear, however, that high maternal blood-alcohol levels in the first trimester of pregnancy are associated with a higher incidence of FAS, although it is unclear how high or how frequently this must happen before foetal damage occurs. FAS causes a range of recognisable facial deformities as well as organ damage—the most significant perhaps being to the brain, with learning difficulties a predictable outcome (Streissguth & O’Malley, 2000; d’Apolito 1998). Australian statistics are currently not available.

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Foetal alcohol effects (FAE). FAE also occurs with high rates of alcohol consumption in later stages of pregnancy. There are no obvious deformities at birth, and the condition is often diagnosed with gradual failure of learning by school age. Intoxicated parents are likely to be less attentive to an infant’s needs, and thus continued high alcohol use during a child’s first few years will interfere with optimal care even when infants are developmentally normal. Infants with FAS and FAE have lifelong conditions which cannot be ‘cured’. Clearly, prevention is the best treatment, and targeting school-aged children regarding the dangers of alcohol is very worthwhile. When FAS and FAE are present, the next best pathway is early and intense intervention. The problems for these children are likely to be compounded by ongoing alcohol abuse. ii) Substance abuse Sadly, there is an increasing array of illicit substances available in most parts of Australia, with inevitable effects on infants. The following are some effects of maternal substance abuse during pregnancy: Methadone: withdrawal effects at birth, lasting days to weeks, and compromising early development; numerous neurological deficits such as short attention span are often found in the first year of life, but it is difficult to ascertain how much is due to current factors such as continued parental drug use and parental lower IQ, for example Cocaine: effects in children by school age are noticeable on speech development, probably because of both receptive and expressive difficulties, the latter relating to a wider problem with motor performance Cannabis: the effects of cannabis use in pregnancy have been difficult to quantify as there is frequently polysubstance use with cannabis. A recent review (Fried & Smith, 2001) has shown indications of interference with aspects of executive function, in particular attention behaviour, even though there is probably no overall effect on IQ Amphetamines: surprisingly little evidence is currently available. Likely effects include cardiovascular problems, with learning and behavioural problems evident at long-term follow-up. As the evidence continues to mount of the effects on infants of individual drugs, the effects of polysubstance abuse in pregnancy, combined with continuing parental use after the child’s birth are also increasingly obvious. There is some evidence of risk reduction when women cease drug use early in pregnancy and undertake healthier lifestyles. For infants born with deficits

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and compromises, these may also be diminished to some extent by excellent early nurturing and skilled interventions by parents (including foster/adoptive parents) and professionals. Continued parental substance abuse, usually associated with a chaotic lifestyle, will rob these infants of this chance, too.

Borderline Personality Disorder (BPD) BPD is characterised by a core deficit in the sense of self, with disordered interpersonal relationships, variable changes in mood, distorted thinking patterns and significant patterns of self-harm. It is becoming more evident that the roots of this condition frequently lie in abusive and chaotic patterns in the woman’s own early life. Her style of parenting is likely to be influenced by role-models from her past. This is clearly not a stable environment for an infant, and the intergenerational transfer of turbulence can often be seen from grandparent to mother to infant. These infants are at significant risk of both direct abuse and neglect. Some mothers are impulsive, and a crying infant can trigger a frightening response. Physical, verbal and emotional abuse are common with this style of parenting. More infanticides are committed impulsively by mothers with personality problems than with psychotic illnesses, although it is not clear that all such women meet the criteria for diagnosis of BPD (Marks, 1996).

Effects on infants of maternal mental illness As has been discussed, the range of effects on infants is wide, and at times specific. Generally, however, developmental outcomes are determined by a multiplicity of factors, including: • genetic susceptibility, including infant’s innate personality and gender • type of maternal illness, including chronicity and treatment effects • other maternal characteristics such as her own attachment models • other substantial support including partner and family of origin in particular • socio-cultural support including professional. Previous authors (Seifer & Dickstein, 1993) have summarised the global effects of mental illness on infant development, using several different models of family regulation to integrate the results of many studies. Firm conclusions that they draw include that: • there is increased risk of mental illness in the offspring of mentally ill mothers • both schizophrenia and maternal depression are associated with other risk factors including psychosocial stress, marital difficulties and poverty

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• both depressed mothers and their infants are less positive in their interactions, at least in laboratory settings • insecure attachment is more common in children of ill parents. It is clear from the work of Sameroff (1998) and Rutter (1979) that the combination of environmental variables determines psychopathology and resilience. In the Rochester Longitudinal Study (Sameroff, 1998), children were assessed at many points from infancy to later adolescence. Environmental risk was determined for ten environmental risk factors, including maternal mental illness, anxiety, lack of positive observed interactions with child, rigidity of attitudes about child rearing, large family size, single parenthood and stressful life events. While each variable was associated with some hazard to outcome, the more risk factors, the worse the outcome for the child’s intelligence and mental health. Mental illness can cause child abuse (particularly emotional) and neglect, but there are many other reasons for children to suffer. Glaser (2000) provides a masterly review of the effects of abuse and neglect on the brain in detailed technical language. Karr-Morse & Wiley (1997) discuss these effects and subsequent child development in an easy-to-read, lay language format. A mental illness in one woman can have a completely different outcome on her infant than the same illness in another woman whose life circumstances are very different (multifinality). Conversely, common outcomes can occur for the infant even when the illness in the mother is different (equifinality). Thus, there must always be an assessment of the whole picture of an infant’s environment in order to understand the potential risks and also the potential to enhance a more favourable outcome.

Care for infants and their mothers Given the breadth and extent of mental illness, and the multiple significant effects on offspring, a wide array of treatment options must be considered. For optimum treatment of each condition described, accurate diagnosis of the woman’s illness is essential in guiding treatment. However, while specific treatments may eventually have proven efficacy, at this point in time evidence-based treatment for each of the conditions is still unavailable.

Assessment When a woman with a mental illness presents for treatment (sometimes this is on her own initiative but not infrequently because others are concerned), the first task is a complete assessment of her current problems. Generally, for more severe illnesses a psychiatric assessment will take place, although this may depend on where the mother presents, and the experience and training

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of staff. Assessment will usually include the woman’s history, mental state and current level of functioning, including her ability to care for her infant appropriately and safely, and also a full physical examination of herself and her infant, which may include pathology testing.

Overall management Decisions will need to be made about: 1. Place of treatment 2. Biopsychosocial management of the acute situation • physical health and medication issues • nursing care when in hospital, or when parenting is severely compromised • psychological treatments for the woman • mother–infant therapies • other relationship therapies such as couple counselling, and extended family work, for example, with grandparents 3. Management of the situation over the longer term • biopsychosocial management for the woman will continue, as may other interpersonal therapies where indicated • preventive interventions for the infant • partners • other children in the family. Place of treatment Factors which determine the venue for treatment include the needs and views of the consumer and her family, the severity of the illness, the availability of treatment resources, safety factors for mother and infant, and current evidence of best practice. Community treatment Most women with mental illness can be safely and effectively treated in their own homes, with professional support and guidance. Treatment options include outpatient treatment, for example through general practitioner, home-visiting support, group support, practical help, family education and medication. Inpatient treatment Specialised units for the joint management of mother and infant have been available in most Australian cities for some decades (well reviewed by Barnett & Morgan, 1996). In general, this allows the safe treatment of mother

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and baby together, at a time when attachment is growing, and the mother will benefit through improvement in her confidence in infant management with staff support. Safety for the infant may dictate separation of mother and infant in the very acute stages. Generally, after one to two days, when behaviour is more settled, mothers manage much of their infant’s care. As sleep is often disturbed in acute illnesses, and good sleep is essential to recovery, infants may sleep in a separate nursery under the care of nursing staff. Acute management: the biopsychosocial approach Schizophrenia, bipolar mood disorder and some severe depressions are generally considered to be biological illnesses occurring in those who may be genetically susceptible. Postnatal (and antenatal) depressions, and anxiety, appear to be caused by a very wide array of risk factors, and therefore may vary from person to person. In general, it is often considered that there is a combination of factors; that is biopsychosocial: biological (heredity or perhaps current hormonal issues), psychological (for instance, low selfesteem or multiple previous losses) and social (lack of perceived support from close family or community). An appropriate treatment package therefore often includes elements from each of these dimensions. This could mean, for instance, medication for the biological component, counselling (either individual or group) for the psychological issues, and enhanced support and/or relationship therapy to help the social problems. Biological treatments General physical health. It is very important to ensure that any physical health issues are given appropriate attention, as mental illness has many associations with physical health problems. Medication in perinatal mental illness. Many excellent medications can be used for the more severe mental illnesses. There is always a finely tuned balance to be sought between providing rapid treatment of the illness to ensure a woman parents her infant in the best manner possible, and the unknown effects of drug exposure via lactation on the infant. While medications have the potential to harm an infant, there are also known consequences of continued maternal illness, including relationship breakdown, occupational impairment and poverty, which also significantly affect an infant (Newport et al., 2002). It is wise, therefore, to discuss (and carefully document) this potentially complex picture with the woman and a support person, in order to ensure that adequate explanations of benefits and side effects to mother and infant are given, with access to further written information.

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Nursing interventions Nursing interventions include emotional care, limit-setting, attention to safety, nutrition, physical health, including the sequelae of childbirth, and establishment and maintenance of breastfeeding or, on occasion, cessation of breastfeeding. Many women need some help with the emotional care of their infants, in reading their infant’s signals and attending to them. Depressed women, for instance, often lack the energy to attend to all their baby’s needs. Infants will turn away from a ‘still face’ (Tronick, 1997); that is, a flat affect, so women may need encouragement to smile (‘faking it’ can be effective) and in general tune in to their infant’s needs as best they can. A significant percentage of women with SMI have had poor parenting models themselves. Nursing staff play an essential role in teaching women different options. Rigid parenting attitudes were identified by Sameroff (1998) as a determinant of poorer infant outcome. Psychological treatments Cognitive therapy. Depression, in particular, is frequently associated with negative thinking patterns relating to low self-esteem. When these are identified, cognitive therapy is often the treatment of choice, and efficacy has been shown in postnatal depression (Appleby et al., 1997). This structured therapy helps women to identify triggers to lowered mood and ‘irrational beliefs’; for example, ‘I’m the worst mother in the world’, and provides a mechanism for challenging these thought patterns. Interpersonal psychotherapy (ITP). ITP has also been shown to be efficacious problem-solving therapy in postnatal depression (Appleby et al., 1997; O’Hara et al., 2000). ITP focuses on and works through an agreed defined problem area, such as role transition, role dispute or grief. Mother–infant relationship therapies Parenting may proceed quite normally in the presence of moderate or severe mental illness, but it is frequently compromised. When direct effects of the illness itself have been addressed, there are still many circumstances in which either the woman herself or carers and professionals can identify specific relationship difficulties between the mother and her infant. Axis Two of the Zero to Three Classification (National Center for Infants, Toddlers and Families, 1994) defines the styles that can be recognised; for example, avoidant or intrusive. A specific mother–infant therapy may be indicated, and Lojkasek, Cohen & Muir (1994) divide the styles into four groups, the first two of which may be undertaken with the mother, with or without the infant present.

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Supportive therapy. Any therapy that provides support for the woman with a mental illness potentially provides a secure base from which she can in turn provide a secure base to her infant, in order to best develop an appropriate attachment. All professionals working with women with mental illness can provide this support. Developmental guidance can also be undertaken by many professionals including mental health professionals and childcare workers. Providing information about realistic expectations of an infant, and about appropriate levels of play and stimulation can be very beneficial to mother–infant dyads. In the latter two forms of therapy, summarised in Stern’s (1995) powerful book, the infant is present as an active partner in therapy and, in general, professionals providing these styles will have had specialised training. Psychodynamic mother–infant psychotherapies. Selma Fraiberg coined the phrase ‘ghosts in the nursery’, a highly descriptive title which highlights her orientation to both cause and solution. Working with a mother–infant pair in such modes as ‘Watch, Wait and Wonder’ (Muir, 1992), a woman is encouraged to identify how her own past intrudes on the here-and-now of her perception of her infant. As she works to understand her role-modelling, she can often change her perception of and behaviour towards her infant. Interactional guidance. More a behaviour therapy, this mode generally involves video feedback of a woman’s relationship with her infant. As she watches herself at play with her infant, the woman, with the help of a therapist, can recognise her style of interaction. Sometimes this may lead to changing, for instance, intrusive behaviours. Frequently, a woman can see herself on tape as performing better than she had previously assessed herself. This confirmation of entirely appropriate parenting in a woman whose main problem is her low self-esteem and negative perception of herself as a mother is frequently an important step towards improvement of mood. Socio-cultural treatments Couple and family therapy. Relationship problems are frequent among those with mental illnesses, both as contributors to the problems and also as effects. Couple therapy is often valuable. Domestic violence issues must often be addressed, particularly with very compromised women who not infrequently have abusive partners (Mowbray et al., 1995). There are also often problems in the extended family, with perceived lack of support a significant precipitant. Group and community support. Increasing social supports can be identified through a wide array of agencies. In Australia, these are likely to include:

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• general practitioner • mother and baby health nurse (maternal and child health nurse) • non-government organisation counselling services • community mental health services. Sadly, supports available are frequently insufficient. Parenting assessments Staff are sometimes asked by Community Services agencies to undertake assessments of parenting capacity (Bartha & Goncalves, 1996). Unfortunately, sometimes staff find significant continuing abuse or neglect of the infant, even when the mother has improved as much as she is able to do. This may lead to separation of the mother and infant on a semi- or permanent basis. Grief counselling for the mother is, of course, mandatory, and may need to be undertaken by a community agency after discharge, as the staff are generally blamed in these circumstances. Longer-term management For some women, the illness may be shortlived, but often women will require longer-term help. Biopsychosocial management Using the guide of Sameroff’s work (1998), continuing treatment which addresses multiple risk factors is appropriate. This is likely to include: • Biological: continuation of medication and contraception—spacing future pregnancies will allow a woman to better attend to her infant’s needs. • Psychological: continuing therapy may be beneficial, and certainly a secure supportive base provides a platform for the woman to provide more secure support for her infant. • Social: women may thrive with support from a partner (provided this is not abusive), family of origin and friends. Ensuring stability of accommodation is appropriate, and a regular income, at least through social security. The effects of poverty on developmental outcome are well known. Community groups for women with mental illnesses including postnatal depression are often available, and are run by a range of agencies. AusEiNet (Australian Network for Promotion, Prevention and Early Intervention for Mental Health), which was funded by the Australian Government to coordinate services for early intervention in mental health, has listed the location of appropriate mother–infant services. As these change over time, current information must be sought from local health services or councils. • Childcare: in Australia, childcare centres must conform to standards which specify maximum ratios of carer to infant. While in the United 32

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States there are concerns about the use of childcare because of its variability (Shonkoff & Phillips, 2000), many studies show that children can thrive with good quality childcare. Women with severe mental illnesses may benefit from having some time for self-care, and their infants will benefit from structured care and healthy input from childcare workers. It is often appropriate to encourage and arrange regular and reasonably frequent childcare for this infant population. Other children in the family It is not uncommon for women with serious mental illness to have more than one child. Inevitably, maternal relapse is a substantial crisis in the lives of children who may already be compromised. The child may have witnessed disturbing behaviours, or may him/herself be the subject of abuse. Appropriate attention to the needs of these children as well is paramount. If the mother is admitted with her infant, toddlers and older children may be placed with relatives or in emergency foster care—out of sight. They should not be out of mind. There are books which can assist in speaking with children in these circumstances (Sved Williams, 1996; Louis, 1994). Appropriate interventions include involvement in family meetings, psychoeducational formats at an age-appropriate level and ensuring they have contact with their mother as soon as is realistic.

Preventive interventions There are no specific studies examining the long-term effects of sustained preventive interventions for mentally ill mothers and their offspring. The best guides, therefore, are those preventive intervention programs which include mental illness as one risk factor. In terms of minimisation of harm, there is no clear pathway. Common sense suggests that better outcomes are likely when a woman’s mental illness has the best available evidence-based practice, and that future relapses are prevented. The pathways for best treatment have multiple current obstacles, including: • the nature of the illnesses, which can be chronic and difficult to treat • compliance-based problems: many sufferers of SMI have great difficulty in accepting that they have an illness and/or discontinue medication because of unpleasant side effects. Drop-outs are common because of insecurities, delusions or for more practical reasons such as problems with transport, money or organisational ability • lack of evidence-based follow-up studies • dual diagnosis—continuing substance abuse • unavailability of services • multiple social compromise including single status, compromised social network, lack of education and low income. Infants of mothers with mental illness

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A number of studies in the United States (Olds, 2002) and Australia (Armstrong et al., 2000) have attempted long-term preventive interventions for offspring of families with multiple identified risks. The list of risk factors varies between studies, but is generally similar to those identified by Sameroff (1998); many do not have a particular focus on mental illness but certainly do not exclude it. In a powerful review, Shonkoff & Phillips (2000) and colleagues state that the seminal question has been proven: interventions which change children’s life trajectories can succeed, but interventions which work are ‘rarely simple, inexpensive or easy to implement’ (p. 397). Interventions must work by enhancing ‘self-righting tendencies’ that children have, which shift the odds in a more favourable direction. While the needs will vary greatly from family to family, many require long-term and therefore expensive help from well-trained professionals. The clearer the goals of a program, the more likely they are to succeed. Resilience in children can be fostered by at least one stable person in that child’s life building on positives; that is, enhancing skills and aptitudes shown by children, and providing some structure, limit-setting and sense of responsibility.

Partner’s role Women with severe psychotic illnesses may have good supportive relationships with their partners. In this case, the partner is extremely likely to provide a vital protective role to his offspring. His stability will offer an appropriate, secure base to the infant, and the closeness generated under these circumstances has been well documented at least in postnatal depression (Field, 1998). It is likely that the developmental outcome for children under these circumstances will be less compromised than in its absence, although there are no long-term outcome studies. There is also a well-documented group of women with SMI for whom the choice of partners is troubled (Mowbray et al., 1995). The woman may have no partner, or her partner may be violent or abusive. In such circumstances, there is a multiplicity of risk factors for her infant, with a stronger likelihood of separation of mother and infant. Clearly, this will bring a new set of circumstances into play for the infant, who will move to some other care, either with extended family or into foster care/adoption.

Role of the consumer As consumer groups flourish and the voice of the consumer is increasingly heard, significant and appropriate changes have been generated for families with mental illness. In the area of infants of mothers with serious mental illness, significant changes include: 1. Women have better access to information about their illness. This may result in informed choices made in a partnership arrangement between 34

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woman and professional, where the needs of the infant become a paramount consideration. 2. Consumer groups such as COMIC (Children of Mentally Ill Consumers) provide a voice in decision-making about policies and services, often identifying gaps in service provision and ideas on making services more consumer-friendly.

When the infant moves into care Less is known about the pathway for infants who have been legally removed from the care of their mentally ill mothers. Legal responses are made through youth and children’s courts, and therefore variations occur throughout Australia depending on state/territory laws.

Training While awareness is growing of the needs of family members when one person has a substantial disability (for example, Strohm’s (2002) book on siblings of medically compromised children), Australia has had a poor record in identifying the existence of the children of mentally ill parents, let alone intervening appropriately with them. The Royal College of Psychiatrists (2002) in the United Kingdom has released a Council Report on patients as parents, and now encourages heightened awareness of their offspring and appropriate interventions. Training programs have been promoted in the United Kingdom, using an excellent training manual developed for that purpose (Mayes, Diggins & Falkov, 1998). There is explicit information for each life stage of development; that is, infant, toddler, child and adolescent.

Policies With growing awareness of the impact of mental illness on infants, there is an increasing focus on endeavours at the policy level in order to ensure that the infants and families are identified and provided with appropriate services (Nicholson et al., 1993; Dawson, Ashman & Carver, 2000). Sadly, it is readily apparent that, despite good intentions, ensuring good outcomes for all infants raised in families with mental illness is not easily achieved. It is also apparent that very few policies currently exist in Australia regarding provision of appropriate services. Federal Government initiatives in the early 21st century are attempting to address this deficit with a series of recommendations from the Children of Parents with Mental Illness (COPMI) project. Some recommendations have been published, with more to follow in 2004. These recommendations will be widely disseminated in print (pamphlet) and electronic (Internet) formats, and will be valuable additional resources for those working in the field. Infants of mothers with mental illness

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During the 21st century, there will be advances in the scientific understanding of the causes, consequences and best available treatments for mental illness. Until societal issues of poverty and family breakdown, and personal issues from the past can all be satisfactorily addressed, there will still be infants and families needing our best and most thoughtful care.

References Appleby, L. (1996) ‘Suicidal behaviour in childbearing women’, International Review of Psychiatry, 8, pp. 107–115. Appleby, L., Warner, R., Whitton, A. & Faragher, B. (1997) ‘A controlled study of fluoxetine and cognitive-behavioural counselling in the treatment of postnatal depression’, British Medical Journal, 314, pp. 932–36. Armstrong, K., Fraser, J., Dadds, M. & Morris, J. (2000) ‘Promoting secure attachment, maternal mood and child health in a vulnerable population: A randomized controlled trial’, Journal of Pediatrics and Child Health, 36, pp. 555–62. Barnett, B. & Morgan, M. (1996) ‘Postpartum psychiatric disorder: Who should be admitted and to which hospital?’ Australian and New Zealand Journal of Psychiatry, 30, pp. 709–14. Bartha, C. & Goncalves, L. (1996) ‘Mental illness and parenting capacity: Assessing for risk and planning for children’, in B. Abosh & A. Collins (eds) Mental Illness in the Family: Issues and trends, Toronto: Toronto University Press. Bennedsen, B., Mortensen, P., Olesen, A. & Henriksen, T. (2001) ‘Congenital malformations, stillbirths and infant deaths among children of women with schizophrenia’, Archives of General Psychiatry, 58, pp. 674–79. Buist, A. & Janson, H. (2001) ‘Childhood sexual abuse, parenting and postpartum depression: A three year follow-up study’, Child Abuse and Neglect, 25, pp. 909–21. Byng-Hall, J. (1995) Rewriting family scripts: Improvisation and systems change, London: Guilford Press. Committee on Drugs (2000) ‘Use of psychoactive medication during pregnancy and possible effects on the fetus and newborn’, American Academy of Pediatrics, 105 (4, Pt.1), pp. 880–87. Dahlin. L., Cederblad, M., Antonovsky, A. & Hagnell, O. (1990) ‘Childhood vulnerability and adult invincibility’, Acta Psychiatrica Scandinavica, 82, pp. 228–32. d’Apolito, K. (1998) ‘Substance abuse: Infant and childhood outcomes’, Journal of Pediatric Nursing, 13, pp. 307–16. 36

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Dawson, G., Ashman, S. & Carver, L. (2000) ‘The role of early experience in shaping behavioral and brain development and its implications for social policy’, Developmental Psychopathology, 12, 695–712. Dempsey, K. (1997) ‘Women’s perceptions of fairness and the persistence of an unequal division of housework’, Family Matters, 48, pp. 15–19. Field, T. (1998) ‘Maternal depression: Effects on infants and early interventions’, Preventative Medicine, 27, pp. 200–03. Fried, P. & Smith, A. (2001) ‘A literature review of the consequences of prenatal marijuana exposure’, Neurotoxicology & Teratology, 23, pp. 1–11. Glaser, D. (2000) ‘Child abuse and neglect and the brain: A review’, Journal of Child Psychology and Psychiatry, 41, pp. 97–116. Haverkamp, F., Propping, P. & Hilgeer, T. (1982) ‘Is there an increase of reproductive rates in schizophrenics? I. Critical review of the literature’, Arch Psychiatr Nervenkr 232, pp. 439–50. Hipwell, A., Goossens, F., Melhuish, E. & Kumar, R. (2000) ‘Severe maternal psychopathology and infant–mother attachment’, Developmental Psychopathology, 12, pp. 157–75. Hipwell, A. & Kumar, R. (1996) ‘Maternal psychopathology and prediction of outcome based on mother–infant interaction ratings’, British Journal of Psychiatry, 169, pp. 655–61. Karen, R. (1998) Becoming Attached: First relationships and how they shape our capacity to love, Oxford: Oxford University Press. Karr-Morse, R. & Wiley M. (1997) Ghosts from the Nursery: Tracing the roots of violence, New York: Atlantic Monthly Press. Kauffman, C., Grunebaum, H., Cohler, B. & Gamer, E. (1979) ‘Superkids: Competent children of psychotic parents’, American Journal of Psychiatry, 136, pp. 1398–1402. Kofman, O. (2002) ‘The role of prenatal stress in the etiology of developmental behavioural disorders’, Neuroscience and Biobehavioural Reviews, 26, pp. 457–70. Lojkasek, M., Cohen, N. & Muir, E. (1994) ‘Where is the infant in infant intervention: A review of the literature on changing troubled mother–infant relationships’, Psychotherapy, 31, pp. 208–20. Louis, A. (1994) Robby Rose and Monkey. Adelaide: University of South Australia Press, available through Helen Mayo House, Women’s and Children’s Hospital. Marks, M. (1996) ‘Characteristics and causes of infanticide in Britain’, International Review of Psychiatry, 8, pp. 99–106. Infants of mothers with mental illness

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Mayes, K., Diggins, M. & Falkov, A. (1998) Crossing Bridges: Training resources for working with mentally ill parents and their children, The Department of Health, East Sussex: Pavilion Publishing, www.pavpub.com. Meaney, A. & O’Keane, V. (2002) ‘Prolactin and schizophrenia: Clinical consequences of hyperprolactinaemia’, Life Sciences, 71, pp. 979–92. Miller, L. & Finnerty. M. (1996) ‘Sexuality, pregnancy and childrearing among women with schizophrenia-spectrum disorders’, Psychiatric Services, 47, pp. 502–06. Mowbray, C., Oyserman, D., Zemencuk, M. & Ross, S. (1995) ‘Motherhood for women with serious mental illness: Pregnancy, childbirth and the postpartum period’, American Journal of Orthopsychiatry, 65, pp. 21–37. Muir, E. (1992) ‘Watching, waiting and wondering: Applying psychoanalytic principles to mother–infant intervention’, Infant Mental Health Journal, 13, pp. 319–28. Murray, L. & Cooper, P. (1997) Postpartum Depression and Child Development, New York: Guilford Press. National Center for Infants, Toddlers and Families (NCITF) (1994) ‘Zero to Three Diagnostic Classification’, From Zero to Three, 2000 M Street, NW, Suite 200, Washington DC 20036: NCITF. Neumann, N. & Frasch, K. (2001) ‘Olanzapine and pregnancy’, Nervenarzt, 72, pp. 876–78. Newport, D., Hostetter, A., Arnold, A. & Stowe, Z. (2002) ‘The treatment of postpartum depression: Minimizing infant exposures’, Journal of Clinical Psychiatry, 63 Suppl. 7, pp. 31–44. Nicholson, J., Geller, J., Fisher, W. & Dion, G. (1993) ‘State policies and programs that address the needs of mentally ill mothers in the public sector’, Hospital and Community Psychiatry, 44, pp. 484–89. Nilsson, E., Lichtenstein, P., Cnattingius, S., Murray, R. & Hultman, C. (2002) ‘Women with schizophrenia: Pregnancy outcome and infant death among their offspring’, Schizophrenia Research, 58, pp. 221–29. Nimgaonkar, V. (1998) ‘Reduced fertility in schizophrenia: Here to stay?’ Acta Psychiatrica Scandinavica, 98, pp. 348–53. O’Hara, M., Stuart, S., Gorman, L., Wenzel, A. (2000) ‘Efficacy of interpersonal psychotherapy for postpartum depression’, Archives of General Psychiatry, 57, pp. 1039–45. 38

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Olds, D. (2002) ‘Prenatal and infancy home visiting by nurses: From randomized trials to community replication’, Prevention Science, 3, pp. 153–72. Patel, P., Wheatcroft, R., Park, R. & Stein A. (2002) ‘The children of mothers with eating disorders’, Clinical Child and Family Psychology Review, 5, pp. 1–19. Persson-Blennow, I., Naslund, B., McNeil, T. & Kaij, L (1986) ‘Offspring of women with non-organic psychosis: Mother-infant interaction at one year of age’, Acta Psychiatrica Scandinivaca, 73, pp. 207–13. Rimmer, J. & Jacobsen, B. (1976) ‘Differential fertility of adopted schizophrenics and their half-siblings’, Acta Psychiatrica Scandinavica, 54, pp. 161–66. Riordan, D., Appleby, L. & Faragher, B. (1999) ‘Mother–infant interaction in post-partum women with schizophrenia and affective disorders’, Psychological Medicine, 29, pp. 991–95. Royal College of Psychiatrists (2002) Council Report CR105. Patients as Parents: Addressing the needs, including the safety, of children whose parents have mental illness, London: see www.rcpsych.ac.uk/publications/cr.index. Rutter, M. (1979) ‘Protective factors in children’s responses to stress and disadvantage’, in M.W. Kent & J.E. Rolf (eds) Primary Prevention of Psychopathology III. Social competence in children, Hanover, New Hampshire: University Press of New England, pp. 49–74. Sameroff, A. (1998) ‘Environmental risk factors in infancy’, Pediatrics, 102, Supplement Nov., pp. 1287–92. Schubert, E., Blennow, G. & McNeil, T. (1996) ‘Wakefulness and arousal in neonates born to women with schizophrenia: Diminished arousal and its association with neurological deviations’, Schizophrenia Research, 22, pp. 49–59. Seifer, R. & Dickstein, S. (1993) ‘Parental mental illness and infant development’, in C. Zeanah (ed.) Handbook of Infant Mental Health, New York: Guilford Press. Shonkoff, J. & Phillips, D. (eds) (2000) From Neurons to Neighbourhoods: The science of early childhood development, Washington: National Academy Press. Snellen, M., Mack, K. & Trauer, T. (1999) ‘Schizophrenia, mental state and mother–infant interaction: Examining the relationship’, Australian and New Zealand Journal of Psychiatry, 33, 902–11. Infants of mothers with mental illness

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Stein, A., Woolley, H., Murray, L., Cooper, P., Copper, S., Noble, F., Affonso, N. & Fairburn, C.G. (2001) ‘Influence of psychiatric disorder on the controlling behaviour of mothers with 1 year old infants: A study of women with maternal eating disorder, postnatal depression and a healthy comparison group’, British Journal of Psychiatry, 179, pp. 157–62. Stern, D. (1995) The Motherhood Constellation, New York: Basic Books. Streissguth, A. & O’Malley, K. (2000) ‘Neuropsychiatric implications and long-term consequences of fetal alcohol spectrum disorders’, Seminars in Clinical Neuropsychiatry, 5, pp. 177–90. Strohm, K. (2002) Siblings, Adelaide: Wakefield Press. Sved Williams, A. (1996) Jake’s Dinosaurs, University of South Australia Press, available through Helen Mayo House, Women’s and Children’s Hospital, Adelaide. Trevarthen, C. & Aitken, K. (2001) ‘Infant intersubjectivity: Research, theory and clinical applications’, Journal of Child Psychology and Psychiatry, 42, pp. 3–48. Tronick, E. (1997) ‘Depressed mothers and infants: Failure to form dyadic states of consciousness’, in L. Murray & P. Cooper (eds) Postpartum Depression and Child Development, New York: Guilford Press. Weinberg, M.K. & Tronick, E.Z. (1998) ‘Emotional characteristics of infants associated with maternal depression and anxiety’ Pediatrics, 102, Supplement, pp. 1298–1304. Yoshida, K., Marks, M., Craggs, M., Smith, B. & Kumar. R. (1999) ‘Sensorimotor and cognitive development of infants of mothers with schizophrenia’, British Journal of Psychiatry, 175, pp. 380–87. Winnicott, D.W. (1951) ‘Transitional objects and transitional phenomena: A study of the first not-me possession’, cited in P. du Gay, J. Evans & P. Redman (2000), Identity: A Reader, London: Sage Publications.

Websites AusEiNet (Australian Network for Promotion, Prevention and Early Intervention for Mental Health): http://auseinet.flinders.edu.au COMIC (Children of Mentally Ill Consumers): http://howstat.com.au/comic COPMI (Children of Parents with a Mental Illness): www.aicafmha.net.au/copmi

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CHAPTER

Talking with children whose parents experience mental illness

4

A D R I A N FA L K O V

Introduction ‘Imagine what it’s like to be a child whose profoundly depressed mother does not respond at all to a simple “look what I did in school today”, or who suddenly switches moods, talking nonstop nonsense for thirty-six hours, and then disappears for months because she has to be hospitalised. Imagine what it’s like to be told by your father, before he goes to work each day, to keep an eye on your potentially suicidal mother when you get home from school—but he is so preoccupied that he never really explains what is going on, never asks how you are doing, and neither does anyone else. Imagine what it’s like to have your mother, who has schizophrenia but won’t take her pills, suddenly come thundering into your room to scream at you for sassing her, when in reality it’s the voices in her head that are taunting her.’ VICTORIA SECUNDA, 1997

Why talking with children is necessary may seem self-evident, but until every practitioner and parent has this view, clearly and unequivocally, it is important to address this issue. As well as providing information and explanation for children, talking is also a way of ascertaining whether a child is confused, fearful, having problems, or ill and requiring support or treatment in his/her own right. The multiple

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impacts and influences of mental illness on children are outlined throughout this book; talking is a good way of ameliorating some of the adverse effects by enhancing children’s adaptive capacities. Furthermore, the nature and extent of children’s understanding of parental mental illness has also been hypothesised as having an important link with the quality of the child’s adaptation. In an earlier unpublished study, this author examined school-aged children’s understanding of parental psychosis (Falkov, unpublished survey). Although not without methodological limitations, the trend was for those children able to provide the clearest (most coherent) accounts of their parent’s illness to also show least evidence of emotional or behavioural problems based on measures of mental health problems and self-esteem. Scherer et al. (1996) evaluated the subjective perceptions of 57 children regarding their mothers’ mental illness, and reported that the children’s perceptions of their mothers’ mental health were significantly related to their psychological functioning. Children who reported their mother as having more psychiatric symptoms had lower perceived self-competence and less social support. Working with a sample of 36 families in which a depressed parent and children (aged 8–15 years) lived together, Beardslee et al. (1997) compared two preventive interventions consisting either of a single lecture and discussion about depression for parents only, or provision of 6–10 sessions of clinical work involving children, parents and family. The authors concluded that results for both groups yielded benefits, but that the more intensive intervention demonstrated the additional advantages of linking information about mental illness to the individual life experiences of all family members, and of directly involving children to achieve longer-term (preventive) effects. One of the ‘givens’ of children growing up, of development, is the process of ‘making sense’—of self, surroundings and interactions (relationships). This is a lifelong process which forms the foundation for successful adjustment and adaptation to the inevitable and unplanned hurdles of life. So why should we not endeavour to ensure routine explanations which facilitate children’s ‘making sense’, especially in circumstances of adversity? For one thing, this presents a dilemma. On the one hand, it seems obvious that providing an explanation about difficulties is a good thing. Children are vulnerable and innocent. They need to be protected from negative influences, adversity and evil forces. However, as adults ‘get close’ to the actuality of talking about difficult things, they face the possibility of children becoming upset—the very thing they are trying to protect them from. Children’s distress

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is difficult for adults to cope with. Potentially painful issues can be easier to avoid. Talking with children could: • upset, frighten, embarrass, damage, worry or confuse them • provide information they do not need or should not receive • be unnecessary because they are too young, they do not notice or they will not understand • affect the parent–child relationship in a problematic way • upset, embarrass or distress parents • lead to children’s removal from the care of their parents • challenge professional knowledge and skills • jeopardise the ‘therapeutic’ relationship • strain scarce resources • breach ‘confidentiality’. The stigma associated with mental illness also generates strong reactions— fear of the unknown, uncertainty, shame and vulnerability (Laurance, 2003). A collusive relationship between media and society reflects and perpetuates unhelpful myths and stereotypes. So the combination of parenthood, madness, and innocent, vulnerable children is a potent mix. Perhaps this is why the splits and separations between mental health and children’s services and agencies have been maintained for so long. How can society support and protect vulnerable children within families in which parents are mentally ill? Talking is one of the ways. Talking is the tool which enables and facilitates the process whereby the hidden is made visible, fears are addressed and myths challenged. Talking requires acknowledgement both of the presence of children in vulnerable circumstances and of their vulnerability. It challenges the notion that the way to protect is through silence. It is the link between exposure to adverse events and circumstances and internal thoughts and feelings. It is the ‘glue’ that supports the ‘making sense’ process. The focus in this chapter is on implications and opportunities for all staff, especially (but not exclusively) those working in the range of adult mental health services. Who should say what, when, and how?

Talking with children—the need to engage parents Providing children with the opportunity to talk about their experiences will be a significant contribution to supporting their present and future emotional health (Absler, 1999). Infants, children and adolescents have thoughts, feelings and anxieties about everything that does, or does not, occur in their environment, particularly in relation to the adults with whom they have the closest contact. They are acutely sensitive, and respond to and make sense of Talking with children whose parents experience mental illness

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the experiences within their developmental capacities; infants and children have active emotional and social lives from the moment of birth (Absler, 1999). Both children and parents need to be a part of the talking process. Discussion should address any parental concerns about talking with children in an honest and open way, emphasising the benefits for the child and parent of talking more openly and considering the possible impacts on children. There should be recognition of the fact that parents do worry a great deal about their children and want the best for them; in some instances there are serious inabilities to meet children’s needs, but in the majority of situations children are not removed from their parents’ care. Early consideration of children’s needs with provision of support for parents can reduce the likelihood of children needing to be removed from their carers. Children do worry about their parents but may be anxious about asking questions for fear of upsetting them. They need opportunities to feel safe enough to ask questions, express fears and talk openly with their parents/carers in order to make sense of their experiences. By helping children express themselves, they are unlikely to be harmed, and this will help them to understand more about worries or difficulties and to develop more effective coping strategies.

Refusal to talk Some parents may refuse to talk about their children. While trying to respect a parent’s wishes, it is important to explore the reasons for refusal—the source of the denial/anger/anxiety. A better understanding of parental fears and dilemmas may facilitate more open discussion. Persistent refusal to talk about their children, together with denial of any impact on them and an inability to obtain any information about the children from other family, friends or agencies must be seen as a serious concern, especially if associated with poor insight and compliance and a history of difficulties in engaging with services. Childcare professionals should be consulted if there are any concerns about child safety and welfare, and where there is evidence of: • persistent negative views expressed about a child • continuing emotional unavailability, unresponsiveness and neglect • inability to recognise a child’s needs and to maintain appropriate parent–child boundaries, including involvement of the child in the parent’s symptoms or abnormal thinking • continuing use of the child to meet parent’s own needs • distorted, confusing or misleading communications with the child

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• continuing hostility, irritability and criticism of the child • inconsistent and/or inappropriate expectations of the child.

The talking process In order to provide information, promote understanding and facilitate harmonious relationships within families, effective engagement is crucial. Some stages in the process include: 1. Recognition of the patient/client as parent 2. Acknowledgement of the presence of children and their individuality 3. Engaging and forming a relationship with parent/carer and child—a collaborative process (talking not telling) 4. Clarity about practitioner’s role 5. Establishing what parents and children know about their illness 6. Supplementing existing knowledge with relevant information while facilitating more open discussion between parents and children 7. Enabling children to ask questions, and empowering parents to respond confidently 8. Practitioner qualities: respect, empathy and warmth, honesty and active listening skills. Children’s experiences and adaptation will be influenced by the: • extent of problematic parental symptoms and behaviours (intensity, frequency, duration and severity of illness) • intensity and duration of exposure to parental dysfunctional behaviour • degree of genetic loading for a particular disorder • extent of associated psychosocial adversities such as separation and parental discord • degree of psychosocial distress experienced by the child (subjective perceptions and attributions) • availability of alternative caring adults and associated family and social supports • extent of child’s responsibility in looking after parent.

When should talking happen? In general, the earlier parents and children are actively involved in talking with each other the better. Timing is always important, and practitioners must judge, according to circumstances (including children’s safety), when to facilitate discussion. However, even in an acute crisis the provision of an explanation to a child about the actions that professionals will be taking represents good practice and can have lasting benefits for children. Talking with children whose parents experience mental illness

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While consideration of individual and family needs should occur routinely at the point of first referral or contact, opportunities exist at all stages for joint involvement and intervention (Falkov, 1998).

Parents not known to a mental health service A first meeting with children and parent(s) is an important opportunity to establish a positive relationship. The practitioner can then be seen as an important adult within the family’s social network. A detailed conversation may not be necessary. It is much more important for the children to be helped to feel part of events through having been spoken with directly. Some children may not be able to answer questions directly, but will be keen to be a part of any discussion about the parent’s illness. Indirect approaches can be helpful; for example, asking one family member about another’s behaviour or feelings. Such children may subsequently begin to contribute to the conversation once they have seen their parent being able to talk more openly about previously unspoken issues. Sometimes the converse may occur when a parent anxious to protect a child, has avoided any discussion but hears a child talking about illness-related matters that have been ‘overheard’, thus demonstrating a capacity to cope with such matters. Such a situation can often bring great relief to a parent and facilitate further discussion.

Parents already known to a service Consideration of the social and family contexts of the ill parent/carer will have provided information about parental concerns regarding children and ways in which mental illness may be affecting the children or the carer’s parenting abilities. These conversations will also have enabled practitioners to emphasise the importance of considering the needs of the children.

Meeting a child and family in crisis When a crisis occurs, including parental hospitalisation, basic principles still apply; judgements will need to be made about the extent of involving the child, balanced against safety requirements. There may be uncertainty about circumstances which precipitated the referral, or about parental diagnosis. The aim of the meeting will be to gather basic information as part of the assessment. Childcare and safety issues may be a priority. If a disturbed parent/carer is to be admitted to hospital urgently, then it is important to ensure the presence of a trusted adult with the child. Once decisions have been taken, an explanation (appropriate to the child’s age) should be given about forthcoming actions for parent and for child.

Approaches to managing children when a parent is hospitalised In order to meet children’s needs when a parent is hospitalised (Falkov, 1998), staff looking after a parent and those caring for the children should: 46

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• Be open and honest. Children will have an awareness of what is happening, including the absence of their parent/carer. They may have observed all that occurred, or overheard conversations while in another room or while hurriedly being taken to neighbours, friends or family. Pretending nothing has happened may be especially confusing. They need to be kept informed. • Provide explanations. A truthful statement/description appropriate to the child’s age, but without minute detail, is sufficient. Use of language which the child can understand is important. The ill parent could be described as sad, confused, upset, needing a rest, stressed, mixed-up inside etc. Describing what happens while their parent is in hospital—talking, being looked after, medication etc.—is also helpful. • Emphasise that the child is not to blame. They should be told this. • Help to minimise disruption and maintain daily routines for children. ‘Special time’ (extra attention) is helpful. • Support opportunities for contact. Children visiting parents in hospital according to parental well-being, in an appropriate and safe setting can reduce children’s distress. Other ways of maintaining contact include letters, phone calls and photographs. • Recognise changes in behavioural patterns. Children will worry, have fears/anxieties, be confused. This may manifest in a wide range of observable behaviours and hidden distress. For example, disrupted sleep or routines, uncharacteristic quietness/inaccessibility, poor appetite, clinginess, bed wetting, demanding or disruptive behaviour, anger, irritability, tearfulness, stomach aches, nightmares etc. • Alert school and teachers. Inform them that the child may need extra support, attention or praise.

Talking at a distance It is possible to engage parents and their children despite geographic separation. The importance is twofold: given the distances in a large country such as Australia, which has relatively poor service provision in rural areas, technology (telemedicine) can promote and support local services while not itself becoming or being seen as a barrier to involving children when a parent has a mental illness. An example of one such discussion is provided in the following vignette. Lachlan, a 9-year-old boy, was referred by his local child and adolescent mental health services worker to the telepsychiatry service at the Children’s Hospital Westmead. He was having difficulties at school—getting into fights when teased about walking with a limp. His nickname was ‘limpie’, and he

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was increasingly reluctant to attend school. Despite additional classroom support, he was under-achieving in his learning. Lachlan’s mother had a history of schizo-affective disorder, with twelve admissions to hospital. She was less worried about Lachlan being teased, but preoccupied with the teacher’s descriptions of his difficulties in concentrating. Lachlan thought he had been referred to get help with ‘liking school more’, and he wondered ‘Am I ADD?’. As part of the assessment, an attempt was made to ascertain Lachlan’s understanding about his mother’s illness and her support for such a discussion. It appeared that they had been helped in the past to talk about the mother’s difficulties. Lachlan described it as follows: ‘I’m not sure about a name (for the difficulties), but she sleeps a lot. She gets a needle (Depot injection) and takes her mls (fluid/syrup)—like medicine—but she doesn’t like the mls. She also has pills—(I) don’t know the name. She changes when she gets unwell; goes a bit cuckoo (in her head) sometimes—when she doesn’t take her mls—thinks someone’s trying to poison her, like Grandad, or that people in the family aren’t really her family. Freaks me out a bit. I try to forget about it. (I’m) not sure if it’s an illness— not a clue. Her mind runs away from her sometimes … imagines things that haven’t happened. (She) packs a suitcase and leaves her sense, her worries in the suitcase. The truth is in the packed suitcase and she thinks about the stuff that’s not real. She’s upset. Living in the gutter of her imagination.’

Who should talk? Everyone should talk. All practitioners have a responsibility to identify parents with mental illness, recognise their support needs and acknowledge the needs of their children. In the United Kingdom, the Royal College of Psychiatrist’s Report (2002) describes roles and responsibilities for all psychiatrists and their teams. Such discussions will vary according to setting, circumstances, purpose and child factors (safety, age and experience). For example, staff in adult mental health services do not have sufficient training in the assessment of child development and mental illness. It would not be appropriate to expect a comprehensive assessment to be undertaken. However, given that all staff would wish to do the best for their patient/client, it is important that they recognise which of their patients are parents, and to acknowledge their role as parents. Furthermore, when the opportunities arise, adult mental health services staff should acknowledge the presence of 48

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children, and initiate discussion with them. This is a conversation. It is important that such conversations are not pathologised but are seen as a good practice, common-sense issue. If staff acknowledge anxiety or uncertainty about how to talk with children, this presents a good opportunity for training in order to develop appropriate skills to talk with children (Falkov, 1998). However parents, too, have a responsibility to talk with or to participate in a process of talking with their children. Many do, and for those who wish to but for various reasons struggle to, an important opportunity exists for collaborative partnerships between parents, practitioners and children.

How to talk with children Laetitia was 11 years old when I met her. Her mother had a diagnosis of chronic schizophrenia with at least eight hospital admissions since her birth. Laetitia, clearly an able child, had become withdrawn and distracted at school following her mother’s latest admission, and her changed behaviour together with a decline in school grades had led to this referral. She was telling me about the circumstances of her mother’s latest admission. She spoke in a matter of fact way and showed little of the anxiety and hesitancy which many children display when asked about their parent’s illness. As a single parent and only child, they spent a great deal of time together. Laetitia was directly and extensively exposed to her mother’s suspicious, at times flamboyant and disinhibited behaviour, for which she often took direct responsibility in managing, and in alerting appropriate adults. However, she also described her mother in warm and affectionate terms: ‘We do things together. She cooks for me. Sometimes she checks my homework. I know she’s got an illness. It’s not her fault. It’s just (that) she stops her medicines and usually I can tell her to take them. But not always—then she gets sick again.’ Laetitia particularly trusted her mother’s mental health nurse, with whom she had a good relationship and who had encouraged her to call if ever she was worried about her mother. This is what she had done on the morning of her mother’s latest admission. On her way to school with friends, Laetitia had noticed her mother, some distance away, walking down the central reservation of the busy high street, dressed only in a short nightie and attempting to direct traffic. Laetitia quickly left her friends (telling them she had forgotten a book at home) and went to her mother, whom she quickly and firmly guided across the road and back home. She rang her mother’s mental health worker. When she arrived at school later that day, her intensely curious peers had numerous questions. In a calm, unflustered way she informed them that her mother was simply ‘on her way home from a pyjama party’. Talking with children whose parents experience mental illness

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The most difficult part, she told me, was getting her mother home: ‘I took her hand—held it tight. I told her “I’m taking you home. If you don’t come home I’m calling the police.” I know my Mum didn’t want that—the last time they locked her up. They thought she was drunk—she wasn’t; it’s the illness, she’s sick, manic-depression’. The purpose of involving children in discussion might include any one or a combination of the following: 1. acknowledgement of child (having a conversation) 2. explanation (providing information for a child about parental illness) 3. facilitating parent–child communication about parental mental illness (enhancing understanding) 4. assessment and treatment of a child if necessary. Factors influencing success in talking with children include: • Recognition of the child’s age and developmental stage as well as cognitive abilities. Using language appropriate to a child’s age is important. For example, with younger children, rather than describing myself as a child psychiatrist, I explain that I am a ‘talking doctor’—someone who is interested in talking with children and asking questions, not doing injections or operations. • Acknowledging their apprehension. Many children find it difficult to talk in unfamiliar settings, to people they have not met before. The presence of their parent or trusted adult is important, as is sufficient privacy, appropriate to setting and age of the child. • Starting with neutral, non-threatening topics such as toys, hobbies or issues of interest to the child. Introduce difficult topics gradually. Establish the purpose of the meeting, and empower the child to be able to seek clarification (‘I don’t understand the question’) or to not answer the question (too difficult). Explain that the child is not alone in this (‘I’ve met other children whose parents have mental health problems/illness’). • The ability to establish a dialogue with a child will allow for gradual checking out of what the child knows about a parent’s illness, the words and language used (the illness, stress, muddles in mummy’s head, depression, mental sickness). Rather than feeling under pressure to provide an explanation for the child, effort and energy should be devoted towards engaging sufficiently so that the child provides useful information and words which can then be incorporated and elaborated in further dialogue. • Observing (and using) children’s reactions and non-verbal cues as clues to the child’s level of anxiousness, distress or fatigue. Younger children tire very quickly. A 10-minute conversation may be more productive than a lengthy, drawn out session. 50

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• Being open and honest. • Being prepared to express uncertainty or lack of knowledge: ‘I’m not sure about that but I can find out’. • Being positive. It is important to acknowledge that talking about mental illness is difficult, and to comment on how well the child is doing. Explain that the discussion is not a test like at school. • Using props—age-appropriate toys and drawing materials can facilitate discussion. Children can sometimes speak well about difficulties while engaged in an activity. Let parents know (if they are present) that this is fine and that the child is not being rude or not concentrating. Children are loyal to their parents and will therefore need to know, and see, that their parents are supportive of such conversations. The best way for this to happen is for parents and children to be together, especially in the early stages, so that shared conversations can become the norm rather than the exception. Most younger children will want and need a parent or other trusted adult to be present. Older children may vary in their wishes, and adolescents should certainly be given the opportunity to talk on their own. If the purpose of the discussion is for explanation, then it would be helpful for the ill parent and/or partner to be present.

What to say ‘… the more painful a new event is for us, the more important it is to talk about it with our children and that it is better to talk badly about things than not to talk about them at all.’ (TISSERON,

CITED IN

KEELEY, 2000)

Children’s questions (David, aged 6-and-a-half) 1. What’s Mum’s illness called? My mum has difficulties with her mood and her feelings. When Mum worries and feels sad, things she says make me know. Sometimes Mum gets angry. I remember when Mum threw the cup (at) Uncle Trevor and the cup hit the window. Mum gets cross when I don’t do as I was told and (she) shouts. Sometimes Mum speaks things that doesn’t make sense, and don’t sleep, and she shouts. Mum imagines things that aren’t real. Mum thinks people is against her, and she shouts around the house. She always moves the furniture around the house. >>

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2. Will Mum get completely well? I want my my mum to be well properly. 3. Will Mum get ill again? 4. List of worries I worry about leaving Mum and go(ing) to a foster mum. Sometime I ask my mum if she is okay because I am worried and I just make sure if she’s alright. I asked my mum because I worry if she’s becoming sick again. I worry because I think that if my mum keep being sick all the time it makes me very unhappy, because I like being at home all the time and I like my mum to look after me. 5. What helps Mum stay well? Mummy said if she stop worrying that will keep her well. Mummy said if she don’t smoke drugs she will stay well. Mummy said if she takes her tablet it will keep her well. Mummy said help from her nurse when she has problems—having someone to talk to keep her staying well.

Explanation about mental illness Providing an explanation about mental illness for children must occur in the context of the parent/carer–child relationship and at a pace which reflects the level and quality of engagement between family members and practitioners. That children wish to have information about their parent’s illness has been clearly demonstrated, as has the willingness of both parents and children to talk about their experiences (Falkov, 1998). Talking should be seen as part of the parent–child relationship—a continuing process, rather than a one-off event. So practitioners should aim to facilitate this joint process by the various approaches described in this chapter. However, despite the clear wish for information to be provided for children, little work has occurred around children’s understanding of parental mental illness as an initial step in developing effective, age-appropriate interventions. A qualitative, group approach was undertaken by Garley et al. (1997) in a study designed to elicit subjective experiences of children (aged 11–15 years) living with a depressed parent. Analysis of the transcripts revealed four key themes or areas of particular concern to the children, with a number of sub-themes: 1. Understanding the illness • personal concerns • illness attributions 52

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• quest for information 2. Recognising the signs 3. Impact of hospitalisation 4. Managing the illness • coping with impact of illness on self • coping with impact on their parent • perceptions of what is helpful for parent • recommendations for other children whose parents are depressed. The major personal concern was actual or feared parental separation. Other concerns included academic and behavioural difficulties at school, fears about becoming mentally ill themselves, and concerns about cause and prognosis of the parental illness. Various attributions were made regarding the cause of parental illness: low self-esteem, childhood sexual abuse, important bio/environmental factors, and stress. All wished to have more information in order to assist in the struggle to make sense of parental illness. The capacity to recognise deterioration in a parent’s mental health was thought to be an important marker for those children who were more able to make sense of their experiences and circumstances living with a depressed parent. Where alternative carers for children were available in the family, parental hospital admission was felt to be positive; sometimes a relief. In managing the impact of the illness on themselves, participants valued friends as a source of support, regardless of whether or not they confided in them about their parent’s illness. Talking within the study group and sharing experiences related to depressed parents was also felt to be positive. Diverting attention/distraction, reading, watching television and playing sport were other examples of how children coped. In coping with the impact on parents, role reversal and descriptions of the burden for the children were extremely common. Excessive responsibilities and loyalty conflicts were frequently described. With regard to help for parents, most were aware of the chronic, intractable nature of their parent’s mood disorder, and realised that medication was important as a control, not a cure. Discontinuation of medication was a frequently cited reason for relapse, and they attached importance to professional availability to monitor medication.

Questions to think about Children may understand how their parent’s mental illness affects themselves and their parent, but not have a clear or well-articulated concept of ‘mental illness’. Some issues and questions to consider when talking with children include the following (Falkov, 1998): Talking with children whose parents experience mental illness

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How much does the child know and/or understand his/her parent’s illness? •

Is the child aware of changes in the parent or the parent–child relationship?

•

What does she/he think caused the illness?

•

Does the child understand that his/her parent is ill (is the change in behaviour/mood due to an illness)?

How does the child conceptualise her/his parent’s illness? •

Is it an illness, or is it the mother/father being difficult/irritable?

•

Is it something to do with the mind/body/brain/stress?

•

Does the child see it as something wrong with the brain, or as a response to stress?

How does the child feel about the situation? •

Is the child worried about the current situation (self, parent, parent in hospital, school)?

•

Is the child confused?

How does the child perceive his/her relationships? •

How does the child perceive the parent’s feelings towards her/him? (Does this change when mental illness is present?)

•

Is the child’s relationship with the parent changed as a result of the illness?

•

How has the child’s relationship with other people, including friends, changed?

What are the consequences of the illness? •

Does the illness affect the child’s role within the home, and/or school and social activities—taking friends back home, going out and so on?

•

What changes for the child when his/her parent is mentally ill?

•

Who cares for the child (professionals, family/friends)?

•

Is the child in contact with the ill parent—particularly during acute phases?

What, if any, are the responsibilities of the child when the parent is mentally ill? •

Is this role the same as when the parent is well? Does she/he take on a caring role? >>

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How does the child think about the future? •

Does the child see the parent getting better, staying the same or getting worse?

•

Does the child worry about becoming ill her/himself?

•

Is the child worried about how long the parent will be in hospital?

•

Does the child worry about who will look after the parent and/or the child?

Conclusion What children tell us can be very distressing and difficult to hear. We need to try to contain our own reactions when we are with the child. It is important that the child does not pick up that they need to protect us from their strong feelings and thoughts. We need to bear in mind that, in order to be helpful to the children we work with, we need to ensure that our needs as workers are always being addressed. This may occur through attending continuing training and professional development, and receiving supervision and support from our colleagues. We need our ‘safe place’ where we can reflect on and share our reactions to the frequently painful stories we hear (Absler, 1999). Children whose parents are mentally ill live with the symptoms, behaviours and expressions of mental illness. They see it and feel it, and in the absence of information and an environment in which they can seek explanations, their experience becomes a potent source of fear, confusion and anxiety. Silence is a barrier to ‘making sense’ and developing strategies for coping. For children, the real madness is living in a situation which generates a whole range of powerful emotions of varying severity at different times, without the capacity, tools or input to make sense of the ordinariness, the chaos and the crisis in everyday life. Talking with children is therefore an essential part of best practice in the treatment of their mentally ill parents. It is vital, pivotal and not always straightforward to accomplish. It presents a challenge for practitioners, across a range of services and disciplines, and parents to work more closely and effectively together.

References Absler, D. (1999) ‘Talking with children about their parents’ mental illness or mental health problems’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: ACER Press, pp. 186–94. Talking with children whose parents experience mental illness

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Beardslee, W.R., Wright, E.J., Salt, P., Drezner, K., Gladstone, T.R.G., Versage, E.M. & Rothberg, P.C. (1997) ‘Examination of children’s responses to two preventive intervention strategies over time’, Journal of the American Academy of Child & Adolescent Psychiatry, 36, pp. 196–204. Falkov, A. (unpublished survey) ‘Troubled lives: School aged children’s understanding of parental psychosis’. Falkov, A. (ed.) (1998) Crossing Bridges: Training resources for working with mentally ill parents and their children. Reader for managers, practitioners and trainers, The Department of Health, East Sussex: Pavilion Publishing, see www.pavpub.com. Garley, D., Gallop, R., Johnston, N. & Pipitone, J. (1997) ‘Children of the mentally ill: A qualitative focus group approach’, Journal of Psychiatry & Mental Health Nursing, 4, pp. 97–103. Keeley, D. (ed.) (2000) ‘Telling children about a parent’s cancer’, British Medical Journal, 321, pp. 462–63. Laurance, J. (2003) Pure Madness: How fear drives the mental health system, London & New York: Routledge. Royal College of Psychiatrists (RCP) (2002) Patients as Parents: Addressing the needs, including the safety, of children whose parents have a mental illness, Council Report CR105, London: RCP, see www.rcpsych.ac.uk. Scherer, D., Melloh, T., Buyck, D., Anderson, C. & Foster, A. (1996) ‘Relation between children’s perceptions of maternal mental illness and children’s psychological adjustment’, Journal of Clinical Child Psychology, 25, pp. 156–69. Secunda, V. (1997) When Madness Comes Home—Help and hope for the families of the mentally ill, New York: Hyperion.

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CHAPTER

On adolescence and having a parent with mental illness

5

GRAHAM MARTIN and T R A C E Y K AY

‘Alan looked at his mother in disbelief. Why had she shouted at him, what had he done? The answer was nothing; he had simply walked through the front door from school and met with a torrent of abuse, most of which he could not understand. She stood there in her nightdress, hair uncombed, red in the face and crying. Something had been up for days. Mum was not Mum. She spent almost all of the day in bed, his little sister was never changed and tea was never on the table. Now she was shouting, accusing him of telling the neighbours something he did not understand, something about how Dad hated her (which he didn’t). He put his school bag down and walked toward her, ignoring her threatening comments and simply putting his arms around her waist, lowering himself down as she slid to the floor—still crying, and now all over his sports top. Alan didn’t know what to do, so he just held her. His sister appeared around the corner of the dining room door (she had been crying too) and sat down in Alan’s lap. She needed her nappy changed. This was going to be a long evening. About a troubled hour later, Dad came through the front door and appraised the heap of humanity just sitting there; Alan stoic and biting his lip, Jenny still weeping, little Chrissy asleep—okay, this was happening again. Saying nothing, he winked at Alan, lifted sleeping Chrissy from Alan’s arms, took her to the bathroom, changed her clothes and gently put her to bed. Returning, Pete pulled Jenny carefully to her feet and took On adolescence and having a parent with mental illness

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her to the bedroom. She mumbled something about fences, but went anyway. When he returned, Alan had the kettle on, three cups and a bottle of milk on the kitchen table and was busy washing the shoulder of his sports top. His younger brother, Barry, chose that moment to burst through the back door, excuses for delays and dirt at the ready. “Mum’s crying again.” “Oh . . . What’s for tea?” Alan shrugged and looked at his Dad dialling the number for the local GP. “Can you fix something, Al?” “Oh . . . Okay . . . baked beans okay?” ’ This is the point at which you would expect something to happen. On basic principles of care, this family needs support—from friends, relatives and professionals. Clearly, the mother needs admission to hospital for assessment, treatment and a management plan for the future. The father needs detailed information about the illness and its treatment and implications, assistance with possible plans for the future, support for himself as a caregiver and practical support with paperwork, daily routine and management of the children. It should all come as a package. Given this crisis is the first episode in which professionals are involved, you could expect they would take a complete story from the mother when possible, and would also want a detailed history of events from Pete. A part of that would be to get a clear picture of the family dynamics, if only to understand any possible stressors for the episode of illness. But that is not how it happened. The general practitioner, well known to the family, was just finishing his evening surgery and had seen over sixty people that day. He arrived about 30 minutes later. He smiled awkwardly at the kids around the kitchen table, and followed Pete into the bedroom where Jenny, facing the wall and writing on the pillows with lipstick, immediately began to shout a repeated obscenity. Dr Bill gently tried some direct questions, with no direct response. He noted the dishevelled appearance of Jenny and the room, the vague smell of old sweat, and took brief notes from Pete about timing of the deterioration. Without being able to name the problem precisely, he recognised a serious emotional state, and the crisis nature of the problem, seeing his role as completing the necessary forms and getting Jenny into protective psychiatric care as soon as possible. He wrote a brief letter, called the on-call registrar at the local psychiatric hospital and an ambulance, and on his way out of the house patted Barry on the head while suggesting to Pete that he might have 58

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to take some time off work and make some arrangements for the kids. Could Alan be left in charge while Pete followed the ambulance to the hospital? At the hospital, a confused, muttering but unresisting Jenny was led away somewhere by insistent staff. The monosyllabic ambulance drivers disappeared, and Pete was shown to a bare green, pictureless waiting room, where he sat for the next hour with several well-thumbed magazines. A nurse appeared and took basic details and a brief medical history about Jenny. The registrar came to tell Pete that Jenny had a serious mental illness (‘probably’ schizophrenia), and that she would need medication and at least a couple of weeks in hospital. Would he please sign for any treatment necessary? Staff would settle her down for the night and could Pete call some time in the morning? The hospital would call him if ‘anything happened’. No details, nor discussion about possibilities. No questions about how he would cope. No questions about whether he had children, when they could visit their mother and how Pete would manage. Well, it was the 1970s, and it could not happen today—or could it? Alan did not see his mother for the following 5 weeks, but his dad tried to reassure him that she was ‘happier’—he couldn’t find a better word. Alan wondered whether he had made her unhappy, but often blamed Barry more than himself—after all, Barry was the one always in trouble at school. And hadn’t Jenny cried when Barry accidentally killed the guinea pig? Alan’s job was to get home from school as soon as he could so the ‘nanny’ could hand Chrissy over to his care. Tea was often partly ready, but if it wasn’t then it was up to him to get something ready for Barry and Dad (who often came home late from work or from visiting the hospital). Thirty years on, Alan is now a father of two boys, always meeting their needs, always there for the sport at which both excel. He sees himself as the carer, the main support in their lives. The old patterns from his teenage years live on. Barry lives abroad, a quiet, serious and thoughtful teacher who survived an earlier ‘hippy’ period and is now in his third marriage, rather obsessively doting on his single child, intensely aware of any supposed problem. Chrissy became a biker’s woman, raised hell for many years, and then spent the past ten years raising a daughter, as a single parent. None of the siblings has had an episode of illness as such; all have survived the multiple trials of life. Only Alan is in direct occasional contact with their mother, who left her young family after many admissions to various hospitals, moved interstate and continued with recurrent admissions for her paranoid schizophrenia; she now lives a very limited life in supported accommodation. Alan remembers with great clarity how confusing it all was. Rather than resenting having to look after the others, he sees it as a special part of himself. On adolescence and having a parent with mental illness

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Adolescence does not have only one pathway; there is no set passage through the physical, cognitive, emotional and body image changes. Even so, Alan’s adolescence was different to others’ expectations. From the age of 12, he was the one always home early from school, taking over from the current nanny, or Jenny when she was home, not doing his homework until all the chores were done. A B-minus student, he gave up after-school sport, but reasoned, at 12, that he was never going to be that good anyway. Not musical or dramatically inclined, he did not have to make decisions about school choirs, bands or plays. When asked about home by teachers, a solemn Alan would simply say that things were ‘Okay, but I have to be there’. He was the one to discover all the crockery, cutlery and kitchen electrical stuff gone with the latest housekeeper, and Chrissy playing in an empty kitchen, oblivious. Anxious about calling the police, he waited till Pete was home, but that night’s spaghetti was eaten on plastic plates borrowed from the neighbour. He was the one to take Barry and Chrissy down to the doctor when Barry cut his knee climbing over a fence. He was the one to put his arm around Pete’s shoulder when Jenny was gone for more treatment. By the time he was 14, Alan was fully developed physically, a grown-up in miniature, thoughtful of others, a mind full of lists of things to do, and ignored by all the girls. He smiled and chatted pleasantly when Barry brought his first girl home, but could not see himself bothering to do the same. Dad had to work, and Alan had to manage what was left of home after Mum trashed the place. Dad stayed out late once or more each week, but Alan never thought to mind. Dad and Mum fought sometimes when she was home. Barry went to a mate’s house, Alan (and Chrissy when she was not asleep) just kept a sensible distance till the stormclouds blew over. When Alan was 15, Jenny just left for interstate. Found by the police after Pete’s report, she returned home, but the fights continued and after about the third time, Pete stopped reporting her as having run away. Alan took a large photo of Jenny from the dining room to the chest of drawers in his bedroom, but there were few overt signs of grief. Pete didn’t want to discuss it when Barry or Chrissy raised the issue. So Alan didn’t talk about his mum, but he was the one who rescued a letter from her out of the bin, and hid her address. (Much later he was to fly interstate with his 18-month-old son to show him off to Jenny.) Pete had a series of relationships over the following few years; vague faces and left-over bits of personal clothing moving in and out of the marital bedroom. Alan just smiled, and cooked using Mum’s old recipe book, and collected Chrissy from school, and shopped at the local deli. (where everyone smiled their support of him). He never thought of himself taking someone home to the bedroom he shared with Barry; he just picked up his bedding and slept on the old couch in the lounge when Barry appeared with a friend one 60

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night. He read rarely (it was too hard to read more than school work), watched television infrequently (couldn’t be bothered by others’ problems), and as a family they never went to the local drive-in (though Dad did apparently, according to the double tickets rescued from trouser pockets before putting them into the wash). Alan left school early in his matriculation year, having no-one at school (staff or mates) persuading him to stay on, and not seeing the point of going on. He got a short-term job at the local deli. to help the family finances. Within 8 months, Dad having settled in the latest relationship, Barry off living with a bunch of mates and Chrissy now an outgoing 10-year-old, Alan joined the army, where he was to excel in his steady, thoughtful, B-minus sort of way. On the one hand we can look on Alan’s story as being sad, the gradual development of a parentified child who missed out on the fun and frolics of a frothy adolescence. He certainly seems to have been an isolate, steadily doing the job as he saw it, but with little in the way of practical or personal support from the outside world. At each step of the way we can argue for resources, supports and education. In the West, we believe it is not fair for a child of 11 years to sacrifice his/her own life in the service of others, and that Alan had the right to his own life trajectory supported by the adult family, friends and professionals. But, on the other hand, we could argue (and from an Eastern perspective would believe strongly) that Alan was lucky to be old enough and solid enough to take on the role of part-time parent and subjugate his needs to those of his siblings and his father. He was protected by his role, shaped by the adolescent years and then by his army career into a solid, sensible, committed worker, immersed in family life with his wife and two (now teenage) boys. Alan is the one to foster the extended family connections; he is respectful and caring of his stepmother and his stepsister, and he is the one who still writes to Jenny. Is he happy? You betcha! Is he fulfilled? You betcha! Can he imagine where life might have taken him if Jenny had not been ill over those crucial years? Well, he is not an imaginative sort of chap, just someone very proud of what he has done, and happy with his lot. Well in advance of Alan’s story we knew that living with a parent with mental illness can be hard and makes considerable change in family lifestyle. Lauretta Bender in 1937 described that children of mothers with mental illness were more likely to develop behavioural problems and that these occurred in early adolescence (Bender, 1937). Elizabeth Rice wrote about determining childcare needs and use of services of children having a parent who had been admitted to hospital (Rice & Krakow, 1966). And, of course, the issue has been important to Michael Rutter since an early paper (Rutter, 1966)

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which foreshadowed his later writing on resilience (Rutter, 1985, 2002). So why did so little help find its way to Alan’s family? One issue is to do with knowledge and how the community finds out about services. Pete knew very little about mental illness until it all happened in his family, and certainly to this day has little idea of the added risks his children might have. He, like Alan, is not a great reader of books or newspapers, and little of the knowledge in this area gets on to television’s current affairs programs. The professionals involved were like professionals everywhere— tired by the complexity and difficulty of the cases they had to deal with, and focused on the immediate problems needing solution, on the crises of the day. It is so difficult to step ‘outside the square’ at the best of times, and the intense clinical focus of mental health professionals often becomes a tunnel they only escape from at the end of the shift, or the day. Then they may reflect on broader issues or what else might be necessary, but the next day brings its own pressures and a renewed tunnel. Several added issues are of importance here. First, in general, mental health professionals are not taught to always take the family system into account. We have known about the impact of expressed emotion on those with mental illness since the early work of George Brown (Brown, Birley & Wing, 1972), but the implications of this seem to have faded despite the importance of recent work (Brennan et al., 2002; Norton, 1982). We work so much more comfortably one-on-one, and case planning and management are often only focused on the individual patient. There is some self-protection here, in that thinking about all members of a family exponentially increases the complexity of the problems. It is so much easier to decide that the family is the responsibility of the other parent and the extended family. Leave it to them … A second issue is that until very recently, with changes in Australian Government policy and strategy, mental health professionals in general have found it difficult to consider prevention. The synthesis of ideas on prevention developed by Mrazek and Haggerty (1994) has had a major impact on thinking in many spheres of activity in Australia, and has resulted in excellent policy (Commonwealth of Australia, 2000a, 2000b). We can only hope that the possibilities for improving outcomes will filter down to both mental health professionals and the general public. The third issue is to do with available information. If you go to a medical clinic with a serious physical illness like cancer, a bundle of pamphlets and guides addressing a wide range of issues is almost immediately made available. At the core of this bundle will be information about evidence-based best practice, with clear guides in simple language to assist you in making 62

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relevant choices. However, it is still very different with mental illness. The whole process is rather secretive, coming from a ‘we know best’ perspective. ‘Just wait outside and we will try some things to help, and then you can come and take your spouse or your child home. Oh, and we can’t give you much in the way of advice about daily living—you just have to do your best’. As though the evidence is not available! On the other hand, there is some doubt as to whether Pete would have been able to absorb the information, translate it for the children and put what was necessary into action. We usually assume that families will not understand, but this is just not the case. There is an issue to do with timing and readiness, and a time of crisis may not be the best time to give someone a bundle of information, even if it is written in a very simple format. But we can offer the information, and then schedule a more suitable time later on, to explore relevant aspects in a bit more depth. As people become ready, they will take on and understand more and more. Sometimes we professionals are anxious about giving out certain information prematurely; for example, saying that someone might have schizophrenia when in fact the pattern may not become totally clear until well into the first episode, or even into a second or third episode. And we don’t want to frighten people too much or too early. But contrary to some opinion, families are not stupid, and they very often guess what is going on, or they may go further and have decided the present situation is a worst-case scenario. We should probably develop staged materials. That is, the first materials (pamphlets, videos or perhaps even ‘touch screens’ (Nicholas et al., 2001) should be about general issues of family mental health care, and how to support someone who has been through the mental hospital assessment and early treatment process. The second stage would then provide detailed information on the specific illness and how best to assist in the process of recovery, as well as what may be needed to avoid relapse. And then there should be a comprehensive, planned process of supports that provides opportunity to work through the information and implications. For the young people there needs to be specifically tailored material with general information about mental health, and how to obtain it and maintain it. There must be material on the kinds of problems which may arise when a parent has a mental illness (Kelly, 1999). And then there need to be specific materials to explain the relevant illness, its course and implications, and what can be done to help recovery and avoid relapse. These materials need to be in some form that allows young people at various ages to understand the issues, and it must be relevant for people of all cultural backgrounds in Australia (Sozomenou et al., 2000). There are some materials available in most states/territories of Australia already, and there are, at the time of On adolescence and having a parent with mental illness

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writing, nationally funded programs developing and evaluating relevant materials based on scoping projects (for example AICAFMHA, 2001). Some authors have gone further, suggesting that some internationally published books for young people may be suitable for what is rather quaintly called ‘bibliotherapy’ (Tussing & Valentine, 2001). But do we know enough to be able to be clear about issues for young people who have parents with mental illness? We would argue that we do—for schizophrenia and other mental illnesses, and in terms of generic issues. We have ample evidence to suggest that a parental mental illness might increase the risk for developing that illness, or that the illness can lead to a range of behavioural or emotional problems. An ill parent’s ability to parent may be compromised; for instance, criticism (or expressed emotion) may be a key factor in the development of problems in young people (McCarty & Weisz, 2002). Single parent status (which may result from having an illness) is a major risk factor for emergence of adolescent problems (Weitoft et al., 2003) and while fathers and mothers have differential impacts on mental health in their children (Connell & Goodman, 2002), the well parent may play a key role in protecting young people in the long term, even if they are not the biological parent (Ellis & Garber, 2000). Having a parent with mental illness increases the risk for both physical and sexual abuse (Sidebotham et al., 2001; Walsh, MacMillan & Jamieson, 2002). In an extreme outcome, a higher percentage of those who kill their children have a mental illness (Farooque & Ernst, 2003). Specific illnesses may increase the transgenerational risk for that illness, or may just increase risks for problems generally. So it is not common for a young person who has a parent with an eating disorder also to develop an eating disorder; nor are risks for other problems high (Park, Senior & Stein, 2003). In contrast, major depression may breed true in that having one parent with major depressive disorder (MDD) increases the risks generically and specifically, and having two parents (Nomura, Warner & Wickramaratne, 2001) or a grandparent with MDD in addition further increases that risk (Warner et al., 1999). Increased genetic risk also occurs in bipolar disorder (DelBello & Geller, 2001), although there is also clear evidence that changes in family functioning may be the cause of problems (Chang et al., 2001). Panic disorder (Biederman et al., 2001), and social phobia may breed true (Lieb et al., 2000). Schizophrenia in a parent is likely to increase risks for a wide range of mental health problems (Ross & Compagnon, 2001). Parental alcoholism is likely to promote short-term adverse outcomes (Obot, Wagner & Anthony, 2001), as well as longer-term difficulties (Jacob & Windle, 2000). These are the latest studies which throw some light on the associations between having a parent with mental illness and developing problems as an 64

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adolescent, and there are few dissenting voices in the literature. Overall, while there are study differences and a range of illnesses, the evidence is strong. So, does that get us anywhere? The answer is that it is right and proper for us to research carefully in this major area of interest. In particular, given the current focus on evidence-based medicine, it is important for us to have the best quality evidence. But, as we said after telling Alan’s story, we have known about the problem since Bender’s work in the 1930s and Rutter’s work in the 1960s. And if the knowledge does not filter down to clinicians, carers, parents and the community, to the very basics of care of adolescents who have a parent with mental illness, then we have advanced nowhere in 70 years. Estimates of the risk for problem development vary from 30–50 per cent, and that tells us that we should make every effort with adolescents who have a parent with mental illness, as a group, to provide care and support. That is, in all of the area of prevention of mental illness, this is a prime opportunity for Selective Intervention (Mrazek & Haggerty, 1994). So, can we make a difference? Is reduction in the percentage of young people at risk possible? Is there a relevant literature? The first thing to say is that Alan’s experience is not unique, and that these young carers receive ‘little community recognition and [have] very limited attention by policy makers, researchers and service providers’ (Noble Carr, 2002). The majority have needs for support, but less than half may get this (Ostman & Hansson, 2002). This seems to suggest that early Australian evidence for the lack of support (Cowling, 1996) has not yet been heard. But then it is not all ‘doom and gloom’. In some cases, in the longer term (and just like Alan), adults who have been carers report better mental health (Shifren, 2001). E.J. Anthony (1987) suggested that competence, confidence and constructiveness were the key. Anne Deveson (2002) suggests, like others, that the key is resilience. Ironically, a recent meta-analysis suggests that resilience may derive from caring, supportive parents (Cuarati Burgio, 2001). More recently, several factors have been suggested as protective— higher IQ, closer parental monitoring, better family functioning, higher educational aspiration and being female (Tiet et al., 2001). Not much we can work with here. A more realistic prevention program expanded a previously researched approach to a more at risk group—with greater flexibility on the part of the clinician, more intensive engagement between clinician and family, with a focus on immediate daily concerns as well as awareness of cultural issues and responsiveness to the experience of violence. ‘Core principles of helping family members to discuss the effects of depression and adversity on family life were affirmed’ (Podorefsky, McDonald Dowdell & Beardslee, 2001). Which takes us back to Alan and his story, and the need for On adolescence and having a parent with mental illness

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approaches which sensitively provide sensible basic care to the family, to the adolescent-as-carer, taking into account the family system and the trajectory of increased risk for illness or for a range of other problems. We believe it is useful to use Rutter’s outline of protective mechanisms. Rutter suggests that they probably fall into five groups:

Those that involve reduction in the personal impact of risk experiences The risk experiences for Alan include the crisis times, the return of mother to the home, and the times when housekeepers ‘did the dirty’ on the family. Alan needed clear information about his mother’s illness and the implications for his family life. He needed time to talk through episodes when he was struggling (and a person to do it with), space to discuss confusing issues to do with caring as well as issues to do with his adolescence. He needed a person somewhere to help him clarify his multiple roles. This could have been someone in the family, a neighbour, a teacher or a mate at school. It could have been formalised as a group process of peer support (for example, Rimington et al., 1998). If only someone had thought to sit down and work through with Alan—what he needed and what he might like.

Those that reduce negative chain reactions There are a couple of obvious areas with which Alan could have used help. His decision to leave school in some ways suited his experience, abilities and grades. However, staying on to complete school is almost always protective. Similarly, Alan’s inability to form friendships during the school years seems to have left him with a lifelong inability to make friends easily or join a group. He is a very funny man at parties—absolutely the ‘life and soul’—but you try and get closer! He has managed to work well with his wife (all credit may be to her), but lives much of his life through his long-term work situation and his two sons.

Those that promote self-esteem and self-efficacy In a strange way, Alan’s adoption of his caring role gave him competence, confidence, meaning and a place. If he had been at a school that today might provide him with a choice of a range of optimism and confidence-building programs, he might have gained an immense amount. Conversely, full of selfesteem, he might have grown a need to opt out of the adopted role and pursue other paths, which in turn would have put extra pressure on Pete or Barry— and then what? This of course is one of the problems with intervention: first of all we must do no harm. But how do you tell sometimes, especially when you are considering a long-term view? Is the gaining of all the skills that we 66

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now believe sit under the ‘umbrella’ of resilience always a good thing? Yes, probably.

Those that open up positive opportunities Alan’s life became very restricted during his adolescence, and his social experiences were very limited. Subsequently, it took many years (and the army) to develop his ability to speak in a group, and also his ability to have a close-ish relationship. This restriction could have been blocked by earlier involvement in outside experiences. A group with other young people whose parents were ill would have been ideal in its being time-limited, once a week, for a designated period.

Positive cognitive processing of negative experiences It was almost 20 years before Alan was able to make sense of his carer’s role and appreciate just what a wonderful impact he may have had on his father, his siblings and his mother. Putting that together with his (now openly acknowledged needs) to live through his sons has (if anything) improved his enjoyment of where his life has led him. There remains one area to be mentioned—how to avoid the most feared outcome of developing some illness because of the increased risk. Alan was clever in his use of the army to provide surrogate parenting over the years in which he could have ‘let rip’ like his brother Barry. His subsequent marriage seems to have also been a major protection. But behind all of that Alan just seems to have the ability to accept what life throws at him and work at finding a way round it. In contrast, Barry’s survival through his world travels and sometimes wild experiences seems to be more a matter of chance. But thus far, neither he nor his sister Chrissy have developed frank illness, and both have overcome past anti-social traits and activities. So could we have re-written Alan’s teenage years, and where would his personal trajectory have taken him? Would intervention through the 7 or 8 years of his adolescence have changed things much? Perhaps not. And this is the central issue: we must approach each young person’s difficulties in a manner that is sensitive to their emerging personality, the family and cultural context. We must offer to enhance skills and traits where we can, but must accept that not every person will accept support or care from us. Education must be made freely available in a format that is easily accessible, and then the opportunity to discuss the issues must also be freely available—one-onone, or in a group as appropriate to the circumstances. We have to reach out actively, and not bury ourselves in our daily work tunnels, but we must respect the wishes of the young people we work with. We must think more often of the systemic context of young people’s lives and acknowledge the On adolescence and having a parent with mental illness

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wide range of pressures they may be under from television, peer culture, marketing and where the world has got to, post ‘9–11’. We must at least attempt to think in terms of a personal trajectory over time, and look for the points at which some intervention may be protective. Adolescents with parents who have a mental illness are at increased risk for a primary illness which breeds true; they are also at risk for a range of other adverse outcomes. The information and programs for prevention of these must be available, we must be trained in their use, and we must give the young people every opportunity to find their own way.

References AICAFMHA (2001) Children of Parents Affected by a Mental Illness: Scoping project, Canberra: Commonwealth of Australia, Department of Health and Ageing, http://www.aicafmha.net.au. Anthony, E.J. (1987) ‘Children at high risk for psychosis growing up successfully’, in E.J. Anthony & B.J. Cohler (eds) The Invulnerable Child, The Guilford Psychiatry Series, New York: Guilford Press, pp. 147–84. Bender, L. (1937) ‘Behavior problems in the children of psychotic and criminal parents’, Genetic Psychology Monographs, 19, pp. 229–339. Biederman, J., Faraone, S.V., Hirshfeld Becker, D.R., Friedman, D., Robin, J.A. & Rosenbaum, J.F. (2001) ‘Patterns of psychopathology and dysfunction in high-risk children of parents with panic disorder and major depression’, American Journal of Psychiatry, 158, pp. 49–57. Brennan, P.A., Hammen, C., Katz, A.R. & Le Brocque, R.M. (2002) ‘Maternal depression, paternal psychopathology, and adolescent diagnostic outcomes’, Journal of Consulting and Clinical Psychology, 70, pp. 1075–85. Brown, G.W., Birley, J.L. & Wing, J.K. (1972) ‘Influence of family life on the course of schizophrenic disorders: A replication’, British Journal of Psychiatry, 121, pp. 241–58. Chang, K.D., Blasey, C., Ketter, T.A. & Steiner, H. (2001) ‘Family environment of children and adolescents with bipolar parents’, Bipolar Disorders, 3, pp. 73–78. Commonwealth of Australia (2000a) National Action Plan for Promotion, Prevention and Early Intervention for Mental Health, Department of Health & Ageing, Canberra: Australian Government Publishing Service, http://auseinet.flinders.edu.au. Commonwealth of Australia (2000b) Prevention and Early Intervention for Mental Health: A monograph, Department of Health & Ageing, 68

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Canberra: Australian Government Publishing Service, http://auseinet.flinders.edu.au. Connell, A.M. & Goodman, S.H. (2002) ‘The association between psychopathology in fathers versus mothers and children’s internalizing and externalizing behavior problems: A meta-analysis’, Psychological Bulletin, 128, pp. 746–73. Cowling, V. (1996) ‘Meeting the support needs of families with dependent children where the parent has a mental illness’, Family Matters, 45, pp. 22–25. Cuarati Burgio, L. (2001) ‘Meta-analysis: The effects of parental practices and parental processes on resilience in adolescents’, Dissertation Abstracts International, 61(10 B), Section B: The Sciences and Engineering, p. 5557. DelBello, M.P. & Geller, B. (2001) ‘Review of studies of child and adolescent offspring of bipolar parents’, Bipolar Disorders, 3, pp. 325–34. Deveson, A. (2002) ‘Resilience, an ordinary magi’, in M. Teesson et al. (eds) No one is an Island: Contemporary TheMHS in mental health services, Book of proceedings, 11th annual TheMHS Conference, 29–31 August 2001, Wellington, New Zealand, Balmain, NSW: The Mental Health Services Conference, pp. 36–41. Ellis, B.J. & Garber, J. (2000) ‘Psychosocial antecedents of variation in girls’ pubertal timing: Maternal depression, stepfather presence, and marital and family stress’, Child Development, 71, pp. 485–501. Farooque, R. & Ernst, F.A. (2003) ‘Filicide: A review of eight years of clinical experience’, Journal of the National Medical Association, 95, pp. 90–94. Jacob, T. & Windle, M. (2000) ‘Young adult children of alcoholic, depressed and nondistressed parents’, Journal of Studies on Alcohol, 61, pp. 836–44. Kelly, M. (1999) ‘Approaching the last resort: A parent’s view’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: ACER Press, pp. 60–75. Lieb, R., Wittchen, H.U., Hofler, M., Fuetsch, M., Stein, M.B. & Merikangas, K.R. (2000) ‘Parental psychopathology, parenting styles, and the risk of social phobia in offspring: A prospective-longitudinal community study’, Archives of General Psychiatry, 57, pp. 859–66. McCarty, C.A. & Weisz, J.R. (2002) ‘Correlates of expressed emotion in mothers of clinically-referred youth: An examination of the five-minute speech sample’, Journal of Child Psychology and Psychiatry and Allied Disciplines, 43, pp. 759–68. On adolescence and having a parent with mental illness

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Mrazek, P.J. & Haggerty, R.J. (1994) Reducing Risks for Mental Disorders: Frontiers for preventive intervention research, Washington, DC: National Academy Press. Nicholas, D., Huntington, P., Williams, P. & Vickery, P. (2001) ‘Health information: An evaluation of the use of touch screen kiosks in two hospitals’, Health Information and Libraries Journal, 18, pp. 213–19. Noble Carr, D. (2002) Young Carers Research Project—Final Report, Canberra: Department of Family and Community Services. Nomura, Y., Warner, V. & Wickramaratne, P. (2001) ‘Parents concordant for major depressive disorder and the effect of psychopathology in offspring’, Psychological Medicine, 31, pp. 1211–22. Norton, J.P. (1982) ‘Expressed emotion, affective style, voice tone, and communication deviance as predictors of offspring schizophrenia spectrum disorders’, unpublished dissertation, University of California, Los Angeles. Obot, I.S., Wagner, F.A. & Anthony, J.C. (2001) ‘Early onset and recent drug use among children of parents with alcohol problems: Data from a national epidemiologic survey’, Drug Alcohol Depend, 65, pp. 1–8. Ostman, M. & Hansson, L. (2002) ‘Children in families with a severely mentally ill member. Prevalence and needs for support’, Social Psychiatry and Psychiatric Epidemiology, 37, pp. 243–48. Park, R.J., Senior, R. & Stein, A. (2003) ‘The offspring of mothers with eating disorders’, European Child and Adolescent Psychiatry, 12 (Suppl.1), pp. I110–19. Podorefsky, D.L., McDonald Dowdell, M. & Beardslee, W.R. (2001) ‘Adaptation of preventive interventions for a low-income, culturally diverse community’, Journal of the American Academy of Child and Adolescent Psychiatry, 40, pp. 879–86. Rice, E.P. & Krakow, S.G. (1966) ‘Hospitalization of a parent for mental illness: A crisis for children’, American Journal of Orthopsychiatry, 36, pp. 868–72. Rimington, H., Olsson, C., Walsh, B. & Sawyer, S. (1998) ‘Parents with mental illness: Is there help for their adolescent children?’, Australian Family Physician, 27, pp. 987–88. Ross, R.G. & Compagnon, N. (2001) ‘Diagnosis and treatment of psychiatric disorders in children with a schizophrenic parent’, Schizophrenia Research, 50(1–2), pp. 121–29. 70

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Rutter, M. (1966) Children of Sick Parents. An environmetal and psychiatric study, Monograph No. 16, London: Maudsley Hospital. Rutter, M. (1985) ‘Resilience in the face of adversity: Protective factors and resistance to psychiatric disorder’, British Journal of Psychiatry, 147, pp. 598–611. Rutter, M. (2002) ‘Family influences on behavior and development: Challenges for the future’, in J.P. McHale and W.S. Grolnick (eds) Retrospect and Prospect in the Psychological Study of Families, Mahwah, NJ: Lawrence Erlbaum Associates, pp. 321–51). Shifren, K. (2001) ‘Early caregiving and adult depression: Good news for young caregivers’, Gerontologist, 41, pp. 188–90. Sidebotham, P., Golding, J. & Alspac Study Team (2001) ‘Child maltreatment in the “Children of the Nineties”: A longitudinal study of parental risk factors’, Child Abuse and Neglect, 25, pp. 1177–200. Sozomenou, A., Cassaniti, M., Mitchell, P., Barnett, B., Coello, M., Sneddon, A., Webber, M., Chuong, J. & Malak, A. (2000) ‘Who’s caring for whom? Living with parents with mental health problems’, in M. Bashir and D. Bennett (eds) Deeper Dimensions: Culture, youth and mental health, Culture and mental health: Current issues in transcultural mental health, monograph series no 117, Parramatta, NSW: Transcultural Mental Health Centre, pp. 96–111. Tiet, Q.Q., Bird, H.R., Hoven, C.W., Wu, P., Moore, R. & Davies, M. (2001) ‘Resilience in the face of maternal psychopathology and adverse life events’, Journal of Child and Family Studies, 10, pp. 347–65. Tussing, H.L. & Valentine, D.P. (2001) ‘Helping adolescents cope with the mental illness of a parent through bibliotherapy’, Child and Adolescent Social Work Journal, 18, pp. 455–69. Walsh, C., MacMillan, H. & Jamieson, E. (2002) ‘The relationship between parental psychiatric disorder and child physical and sexual abuse: Findings from the Ontario Health Supplement’, Child Abuse and Neglect, 26, pp. 11–22. Warner, V., Weissman, M.M., Mufson, L. & Wickramaratne, P.J. (1999) ‘Grandparents, parents, and grandchildren at high risk for depression: A three-generation study’, Journal of the American Academy of Child and Adolescent Psychiatry, 38, pp. 289–96. Weitoft, G.R., Hjern, A., Haglund, B. & Rosen, M. (2003) ‘Mortality, severe morbidity, and injury in children living with single parents in Sweden: A population-based study’, Lancet, 361 (9354), pp. 289–95.

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Personal accounts

Miriam’s story

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CHAPTER

Miriam’s story

6

MIRIAM CARR

My name is Miriam Carr. I am 17 years old. I’m currently in Year 12. I live at home with my parents and my brother, and I have an older sister who lives nearby. I have many similar interests to people my age. I like music, clothes, socialising, dancing. I have a part-time job, and I have mixed feelings about school. However, unlike many of my school friends I have a parent with a mental illness. My mum has manic-depression, or bipolar disorder. I’m going to share with you a bit about what it’s been like for me growing up with a parent with a mental illness. I’m not going to say that my life has been miserable because of my mum’s illness, because that is not true; however, at times it has been extremely difficult. It is going to be from my own memories and knowledge and from related information that I’ve been told by people I trust. I’ve pretty much always had a close relationship with my family. I’m close to my brother, who is only 13 months younger than me, and I’m close to my sister. I feel my parents are always there to support me, help me, give me money or just give me a hug. I suppose my parents and me have a reasonably honest relationship. If I’m upset I’ll tell them, and I rarely feel the need to lie to them. I think that I’m particularly lucky in this. I love my family very much and feel very loved by them. When I was born my mum was quite sick with an undiagnosed mental illness. So from the earliest possible age I’ve been around mental illness. I know that my mum feels very sad by the fact that she couldn’t enjoy me or even attend to me very well because she was sick. I was always dressed and changed, but apparently I was quite underweight. Mum and I stayed in a sort

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of hospital where Mum fed me up until I was a nice healthy weight. Some time in between then and when I was about 4 years old, my mum was diagnosed with manic-depression. Mum went to hospital a few times when I was about 4 or 5 years old. Apparently, she had electro convulsive therapy (ECT). My dad, brother and sister and I moved in with my grandparents while my mum was in hospital and for a while after she came out. I remember going to visit her in her white room. I remember eating Koolmints and people at the hospital being very nice to us. I have vivid memories of being scared one day because my dad was out the back crying or something. I also remember my mum having lots of sleeps when I was little. She still has lots of rests now, but I’m so used to this and I know this is one of the ways she controls her illness. I found it really hard with my mum being in hospital, as lots of people did. I remember feeling very alone and sad and extremely confused. I can’t really look at a photo of myself at that age without feeling sad. This was probably one of the saddest times of my life. My mum got a little better and over time I suppose she learnt how to handle her illness really well with help from many professionals, family and friends. Mum’s depression has often been so bad that she has gone for a stay at my grandparents. She hasn’t had to go to hospital for about 10 years. Usually, if she’s depressed she’ll just sleep a lot and is withdrawn, and she just generally forgets things. She slows down a lot more. She might forget to brush her hair or she might forget to say hello to someone she knows, just little things like that. I find it hard when my mum is like this because I’m scared that she’s going to embarrass me. And sometimes I have to remind her to do things like bring money for groceries or to pick me up from rehearsal at 6 o’clock. Sometimes I get really annoyed at her when she forgets, and I’ll be a bit short with her and say stuff like ‘C’mon Mum, get your act together’. But then I always feel really guilty for being frustrated by her. It’s because I used to not really understand why she was being so absent-minded. When my mum is like this I don’t want people to think my mum is rude or lazy or absent-minded, but at the same time I don’t want people who know about her illness to pity her, because I know that when she’s well she is an intelligent, warm, energetic, creative and very capable person. When my mum is manic or high she can be very irritable, snappy and sometimes irrational and impatient. She can also be extremely overenthusiastic, full of energy and ideas. It’s hard to tell if she is unwell when she’s like this, because she is an optimistic, enthusiastic person most of the time, anyway. When Mum is high she becomes a bit careless with money.

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This can be good because she will buy me stuff, but it also has its downside because I don’t know whether or not we can afford it. I suppose this has made me pretty cautious about going shopping with my mum. These days my mum has her illness under control pretty well, and it’s pretty hard to tell if she is sick or not. But usually she tells me if she’s unwell. She might say ‘I’m a bit flat at the moment, so sorry if I’m a bit distracted’. Or she might say ‘I’m not cross with you, I just haven’t been sleeping too well and I’m very irritable’. I prefer it when she tells me because I understand how she is and how to behave. It also makes me feel relieved to know that she’s aware that she’s a bit sick. My mum usually gets quite unwell around January every year. Often we’ve been on holiday when Mum has gotten really sick. That is never nice, and in the past I’ve been very apprehensive to invite friends away with us just in case they didn’t understand. However, most of my friends know about my mum’s illness and try to be very understanding about it. And the community I grew up in, family, friends and such have always been a terrific support. My mum’s friends in particular understand her illness, but they also know how fantastic my mum is when she’s well. Last year my older sister was diagnosed with bipolar disorder. She was sort of in and out of hospital, and I suppose having the same illness as my mum, Mum was able to care for my sister really well. Having manic-depression has made my mum really in tune with my brother, sister and my well-being. She’s made me feel throughout my life that my feelings were valid and important. I suppose it’s also made me more sensitive to the way other people are feeling. The hardest thing for me about growing up with a mum who has bipolar has been the confusion about what’s wrong with Mum, the fear of being embarrassed by her when she’s unwell, and actually seeing my mum depressed is hard because I just want to make her feel better. One of the things that I don’t want my mum to feel is guilty or to think that she has been a bad mum, but at times a sick one. I don’t really find it too hard talking about my mum’s illness to my friends. However, it’s easier to talk about my sister’s illness with them. I don’t really know what their understanding of it is, so even though I do tell them stuff about it I feel apprehensive. I’ve known one of my friends since I was 2 years old, and we are family friends so she understands it well. She also understands me well in that I want people to know that it’s hard and I’m grateful for support but I don’t want people to think my mum is an idiot. She knows my mum well enough to know the good things about her but also the results of her sickness. I’m really grateful for this.

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When I leave school I might be interested in working with organisations to help educate people about depression. For my own sake I wish depression and mental illness were talked about more in school and other places because often I’ve felt really alone and embarrassed from the results of my mum’s illness. In the future I hope that I’ll continue to be able to support my mum and my sister with their illness. But also to receive support from them and the rest of my family in my daily life.

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CHAPTER

Finding beauty

7

MIKHAELA DELAHUNTY

My mother, Jill, is 43 years old; she is unsteady on her feet, her speech is hard to understand, and she needs to be showered, dressed and fed. The nature of her disease is not at all pretty. But as far as my mother is concerned, she is a lot luckier than most perfectly able, thinking people, and as she says ‘it’s not cancer’. ‘Normal’ people are those who look disapprovingly at her in the supermarket, the type who scoff at her awkward ways, the type whose own fear of mental illness and all things they do not understand, over-rides their better judgement. They are the type who are too naive or scared to acknowledge that that could be them one day, because mental or physical impairment can strike anyone at any time. Not all mentally ill people are born that way. My mother was a perfectly able person. She is described to me by countless people who remember her better than I, as being ‘fiercely intelligent, with a razor sharp wit and a tongue to match’. She did not suffer fools, and to those whom she loved she was loyal; however, to anyone who crossed her or her loved one’s path, she was a force to be reckoned with. She loved to read, dance, paint, go to garage sales and op shops in search of that antique, and she really loved a drink. Now, some 4 years after her diagnosis of Huntington’s disease, she does none of these but paint. She cannot drink alcohol due to its reaction with her medication, and doesn’t like going to unfamiliar places because she is fully aware of the way she walks and talks. She can’t dance because she would fall flat on her face, and her attention span is declining, so thus a book that she could read in one sitting 3 years ago now takes her weeks. Finding beauty

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The saddest part of my mother’s disease is that while she is physically deteriorating she is still 90 per cent capable mentally. The main problem for her is that her speech is so slurred that most people cannot understand what she is trying to say. For someone like her, with a great sense of humour and wit, this is most frustrating. But she handles it with great patience; patience being a virtue she has only acquired very recently. Huntington’s disease barged into my life just after Mum was diagnosed, when I was just 14 years old. It was unexpected, and although hereditary, the illness had not been found in our family before then. When she was diagnosed, Mum didn’t have any symptoms except for constant mood swings. She was then always bad-tempered, but it was compensated by her sudden bursts of good humour. For the years after that I saw a counsellor every two weeks when things were really bad, then only whenever I felt I needed to when things were more settled. This continued way into Year 12. My way of coping with Mum’s illness was to pretend it wasn’t there, and the way to do that was to avoid being at home. I started wagging school, and at age 14 started drinking alcohol. I was lying to my grandparents and my mother about where I was. I would tell them I was staying at a friend’s house, when in fact I would be off at ‘get togethers’ held by our male friends who were 3 years older than us, and drinking ourselves stupid. We were lucky that these male friends never took advantage of us, given that young girls can’t handle their alcohol, and I certainly was no exception. Hence, my marks waned at school. That was hindered also by my truancy, and lack of completion of homework. I would take out many of my frustrations at school, being troublesome when I was bored was a favourite, and patronising my teachers just to see what I could get away with was probably the most exciting thing at school. Eventually, my grandmother told my principal about my mother, and the stresses it had on me, and things changed at school. My teachers were more supportive, because now instead of just being a painful and arrogant student, they encouraged me to keep on the right track. I then got my first boyfriend, who calmed me down and helped me through much of what I was going through at the time. It was my counsellor who got me into a group called PATS (Paying Attention to Self), and their combined support, with that of my family and teachers, that kept me at school and out of potential ‘trouble’. I was reluctant to go to PATS, as most kids are to things like that, but my counsellor’s gentle persuasion and subtle encouragement got me there. It was a group designed to cater for children who have a parent with a mental illness. In our 2-hour, once-weekly groups, we talked and learnt practical ways of dealing with our stresses at home from other group members, who had their own first-hand experience. Five years on, I’m still involved with the 80

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group. Although I don’t do any ‘groups’ as a member myself, I am a peer leader and regularly give talks at conferences and the like in regards to the group. It was around that period that I could have gone either way. I could have become angry at the world and given up and let everything go to hell, or I could have kept going and doing what was right, but a lot more of a hassle. I chose the latter. The thing is, I was lucky. I’m not being self-righteous or arrogant, but the thing that made me feel like it was worth it was the support. I am fully aware that not everyone gets that. No matter how hard I tried to feel sorry for myself and play the victim, because it was easier than fighting, there was no way that I could argue with the point that I was not a victim because I had all these people who wanted to, and did, help me. My grandparents, who have practically raised me, would do whatever it took to get me to school, such as getting me out of bed (which included breakfast in bed from Grandma), driving me there and giving me money whenever I needed it. Knowing that they put so much effort into me was a big deciding factor in my decision to keep going. I had the opportunities I had—all because of them. I was put onto the right services when I needed them. A child to a single mother, I didn’t have the resources to pay for the support, so I got it for free. My counsellor was bulk-billed. My friend, who went through a stage during which she was suicidal, paid six different counsellors (or ‘shrinks’, as she called them) $250 an hour until she found one she liked. My counsellor, whom I will call ‘Doc’, was fantastic, and was instrumental in the services (such as St John of God, who took Mum out every Friday for 2 years) that helped my mum. Doc advised my grandmother where to go for support, and applied to my school to have my fees waived at her instigation. When I finished Year 12 she called me to see how I went. I don’t think she realised how much of a positive impact she has had on my life, but one day I hope to tell her. Although not pleasant by any stretch of the imagination, my mother’s degenerative disease has exposed me to such beauty—of my family, the people and services who support her, people in general and above all, her. Because while my mother is ripped apart by her horrid condition, it has exposed many layers of her personality that show just how much she has gained from this ‘journey’. While it doesn’t compensate for what she has lost, one of the things Mum has taught me is that to survive in hard, very hard times, you have to find something positive from the experience, no matter how impossible it sometimes seems. It, quite simply, is the only way you can go on. Part of this ‘going on’ is my mother’s exercises. My mother’s exercise regime consists of breathing in and out of her McDonald’s straw, repetitively for 5 minutes. It is a bizarre sight as much as it is heartbreaking; however, it is this picture that epitomises her new-found determination. If all of these ‘breathing exercises’ enable her to speak just a day longer, all of her efforts Finding beauty

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will have been worth it. As is her ‘physio’ to help her walking. Whether it will help her or not remains to be seen, but she trudges up and down the hallway decked out with her new knee pads. You can’t help but laugh and be impressed by her patience. For most people who have Huntington’s disease there is usually no fight, because you are told from the time of diagnosis that you cannot beat it, and while you may be able to delay it or prolong it, it will catch up with you eventually. As well as no cure, there is very little in the way of treatment, and it thus is often too hard, and too nasty, to hang on to the thread of a chance, or a miracle, that you may be able to sustain some ability, such as speaking or walking. Thus, it is perfectly understandable that most sufferers give up and just exist (depression is an early symptom) without a fight and let the disease take its course. A course which basically will diminish a usually middleaged, able, thinking, ‘normal’ person, if you will, to that of an uncommunicative vegetable who lies in a special bed all day and is fed via a tube. It is a slow and painful process for the families to witness, so one cannot begin to imagine how it is for the sufferer. While I have never heard my mother complain once about her impending fate, which she confronts every day by seeing the other patients at her ‘residential care’ (nursing home), it is the personal journey and development she has made that amazes me. While it has been hard, and emotionally strenuous, I am glad to be witness to it in some ways. Because while it does not compensate for the deterioration of my mother—she has lost an immeasurable amount of weight—she is a beautiful person who seems to have gained peace and happiness even though the road she travels is not a nice one. Nobody wants mental illness, and nobody wants to be removed from their daughter when she is just 18 years old, to be whisked off and live in a ‘residential care’ facility at age 41. She has been there for about a year and a half. The beginning of the end, so to speak, came about one night after I had put Mum to bed and noticed smoke coming up from the couch she had just been sitting on. Upon inspection I noticed that the cause of it was a cigarette burning, albeit slowly, a hole in the couch. It would have been about the size of my hand. To say I freaked out is an understatement. The fact of the matter was, that had I been asleep or not home, the cigarette would have continued smouldering until it eventually lit up, and then would have lit the rest of the house up, too. My mum and I lived upstairs, in a sort of apartment. With no smoke detector, either. Simply, it could have been a disastrous result of my mother’s drinking combined with Huntington’s disease. I told one of Mum’s doctors, who just happened to be making her quarterly visit. I would never have been able to envisage what was to come. I thought, 82

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at the most, they would just send some people out to make her stop drinking, which would have been great, because finally I would have been able sleep easy at night! Instead, they sent out a member of the Huntington’s Disease Association and another lady from a mental health organisation and urged her to stop drinking. I thought that was the end of it. They came around again and suggested she move into residential care, at age 41. They were making ‘visits’ so often after that that they may as well have pitched a tent on our doorstep. I cannot remember the first time I was told that Mum might be put into residential care. I have no recollection of it whatsoever. However, I remember it when they suggested it to her. Of course she said no. Then they suggested it again and then they gave her two choices: go willingly, or we’ll take you to court, to have the decision made there. If Mum lost she would not have just lost the fight to be able to stay at home with her daughter, but she would have been assigned to a medical guardian. Imagine at age 40, not being able to make decisions for yourself. Mum decided to spare her family and herself the grief and went ‘willingly’. However, there was a court proceeding to decide who should administer her money, what little she had, between either the State Trustees or the residential centre she was in. Highly unnecessary, I think, but thankfully the residential centre give it to her when she wants it. And that simply was that. They deemed my mother, in early stages of Huntington’s disease, who could walk and talk properly, unable to live at home as she was a danger to herself and her family. They knew very well that the only time she was a danger was when she was drunk, and she agreed to stop drinking. Also, because she did not shower every day and had mood swings and had lost a few kilos, she was deemed unable to look after herself. Of course this was all Huntington’s behaviour! Nothing to do with my mother’s personality, which always was a little on the unkempt side, and a little moody, but by no means so impaired that she needed to be put into residential care. Within two weeks Mum was gone. My mother would have been more likened to an alcoholic than a mentally unfit person. I felt like I lost my mother, all but for what adds up to 2 full days a week, when my 75-year-old grandfather makes the 45-minute trip up and 45 minutes back to pick her up and bring her home. It was interesting to see my mum, who was always so feisty, just accept what was to happen to her. It was the most dignified thing I think I’ve seen her do—and it certainly won my admiration. Because while I sat there and cried myself to sleep for a week, feeling sorry for myself—it took me such a long time to learn to live with—that I never did really stop and think just how much it must be affecting her. She is the one who had been forced from her home, to live in a home where she was the only person in her ‘house’ who was not spoon fed, where she was the only person who could talk and walk,

Finding beauty

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and to see all these people, in the latter stages of her disease, and deal with it. Yet, I didn’t hear her complain once. When I asked her once how she sleeps with the guy across from her screaming all night, she said ‘I don’t notice it anymore’. It made me realise that there was a time when she did notice it, and that I never knew or stopped to think about how it must have been for her. The reason Mum had to go was, I believe, because she was a victim of circumstance. Had Mum been married with a capable husband to ‘look after her’ instead of her mid-70-year-old parents and her ‘young’ 18-year-old daughter, she would still be home today. February (2003) was her one-year anniversary of being moved. To say things have changed dramatically is an understatement. Recently, Mum has had to be spoon fed; she’s lost more weight, although in care, and her speech is usually unrecognisable. She says the only time she talks is sometimes to the nurses, and if I call. How is someone meant to be able to sustain their speech if it is not regularly exercised? Anyway, she is having a party, at her insistence, to have her friends over to her house simply to show them where she lives. All but two of her group of friends haven’t seen her new ‘home’, and the ones who went so supportively a year ago, haven’t been back since. I’m sure it is hard for them to see her deteriorate the way she has; I try not to begrudge her friends—maybe in their busy lives they forget just how much harder their absence is on her, and that one day Mum will not be able to talk back to them. Upstairs where I still live with my grandparents (they have downstairs, I have up) is lonely without her and I do miss her. As I said, my grandparents bring her home regularly and I know that one day that is going to have to stop. I dread that day. But I guess to be able to derive something positive from it makes it not all a ‘waste’. Through her experience I have gained, too. A new respect and admiration for my mother, a renewed faith in people, and I have learnt to forgive. I have a sense of what’s important in life and what isn’t. That life is too short to sit and lament on what it could have, should’ve, couldn’t and wouldn’t be. Once I detested my mother, but now I admire her immensely. As her only daughter I feel privileged to be able to experience to the full extent just how far she has come. While her speech gets more slurry by day, her walking gets more unsteady every time I see her, and her ability to look after herself deteriorates also, it is things like seeing her doing her speech exercises, at her insistence, to maintain her ability to communicate, that I marvel at. I marvel at her determination, positivity and drive that sees her try and prolong her abilities, to talk and to walk, to laugh and to paint, her ability to really ‘live’ as long as she can.

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CHAPTER

In a daughter’s voice— A mental health nurse’s experience of being the daughter of a mother with schizophrenia*

8

KIM BLAIR

‘… there was always the struggle; it was constantly fresh & real, like mourning a recent death. I have tried as honestly as I can, to work through a dark hidden part of myself which, though I’ve come to understand it fairly recently, has been a familiar presence, sitting behind my left shoulder, just out of sight, for all of my life.’ (ANNA ROSNER BLAY, 1998, P. 259)

The struggle Although Anna Rosner Blay talks of her experience as the daughter of a mother who survived the holocaust, her words reflect some of my own experience of being the adult daughter of a mother with paranoid schizophrenia. As an adult I found that my childhood and the circumstances of my upbringing left me wrestling with what seemed to be a perpetual emotional struggle. It was as though I carried a hidden disability with me that others weren’t aware of, but that nonetheless affected my progress throughout life. Outwardly, I appeared to be relatively successful and accomplished, developed a career in psychiatric/mental health nursing, married and had a child, and generally managed to seem like everyone else. As my maternal grandmother once said to me ‘Well, you’ve done alright, you children. I mean, you haven’t turned to drugs or anything have you?’ Fortunately, I hadn’t turned to drugs. But as I tried to explain to my grandmother at the time, outward appearances don’t necessarily speak of the

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turmoil that can lie beneath an apparently successful surface. Having long enjoyed the Star Wars film series, I have sometimes thought of this struggle between living positively in the present, and mourning and raging about the past, in terms of the metaphor of ‘the dark side of the force’. In its simplicity, the galactic battle between ‘good’ and ‘evil’—or ‘the Force’ and ‘the dark side’—represent the internal battle I’ve waged to retain hope, optimism and faith, and not to succumb to hopelessness, mistrust and despair. Often, I’ve wondered whether the ‘dark side’ would win. Although I think my journey towards emotional peace will continue throughout my life, my struggle with the past is now more like a murmur in the background rather than the torrent of earlier years. It still sometimes sits like the ‘monkey’ on my shoulder, but my childhood experience of being the daughter of a mother with schizophrenia doesn’t rule me now with quite the force that it once did. I can see that the story of my childhood carries the echoes of many others’ stories, and in it I have come to see the benefits as well as the difficulties that have enabled me to forge a life that has found hope, love and achievement. In terms of my experience as an adult child of a mother with a mental illness, as well as my experience as a psychiatric/mental health nurse, this chapter is written in two ‘voices’. In the first section I share my story in the voice of eldest daughter of a mother with schizophrenia, while the second is written in the voice of a psychiatric/mental health nurse and the knowledge and experience I have gained from this work. From a combination of these voices I offer suggestions for those who work with children and adult children of parents with mental illness. Throughout the chapter I have borrowed phrases and quotes from film, literature and music to illustrate some of the issues I have chosen to discuss.

In the beginning … I am the eldest of six children: three boys and three girls born over a 9-year period. My mother and father were very young when I was born, just 23 and 21, respectively. I was a breastfed baby until the age of 3 months, when my mother left me at home one day while my father was at work and fled interstate to stay with a friend. Story has it that a neighbour heard me screaming in my cot and rang my father, who came home to find me wet and hungry, and my mother gone. She eventually returned home again about 9 months later. This first episode of what appears to be post-natal illness was to be the beginning of my mother’s lifelong battle with serious mental illness. It subsequently seemed to worsen after each birth. At the time my mother left, I was sent to live with my paternal grandmother and aunt, who looked after 86

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me until my mother returned home when I was about one year old. I have often thought that the time I spent with them forged a particular bond between me and my aunt and grandmother. Both of them, as well as my maternal grandmother, were to remain important adjunct carers for the remainder of my childhood. I have since thought that if it weren’t for them, we may not have survived as well as we did. I have also considered myself fortunate to be born a girl, as my next sibling— a brother—didn’t fare as well. He died at the age of 3 months, ostensibly from cot death. However, many years later my father gravely informed us that it was more likely my brother was starved to death. It seems my mother had a particular issue with the boys in our family, believing they were all ‘retarded’ or deformed in some way. Notes we found years later, written by her about our dead brother, describe him as ‘spastic’ and ‘gone to God’. Indeed, it has become something of a family joke between us children that my middle brother, also labelled as ‘retarded’ by my mother, has done rather well for someone who was supposedly mentally deficient! This brother spent the first 18 months of his life in a hospital, labelled by my mother as retarded when it seems he actually suffered a series of middle-ear infections. I don’t know very much of my mother’s childhood as she has rarely talked about it, but her issue with the boys in our family seemed to extend to men in general. Her father and mother had divorced when she was young, and there was little resultant contact between her and her father, unless initiated by her. Her subsequent delusions when unwell often had what appeared to be a powerful central male figure in them, and she seemed to have a general dislike and mistrust of men, making frequent disparaging remarks about, for instance, her stepfather and my father.

Six degrees of separation My siblings and I were separated early in life, but have remained linked by both familial and emotional ties. There were five children born after me. A sister, a brother, another brother and then a sister. By the time my youngest sister was born my parents’ marriage was no longer functional, and she was fostered, along with my younger brother, to family relatives. The two of them grew up with this family, and we were only all to meet again some years later when I was a teenager. Not many years after this, having met him only a handful of times, my youngest brother was killed in a car accident at the age of 20. My mother does not acknowledge the youngest two children as being hers, and also does not speak of my baby brother who died. When unwell, she has even referred to my youngest sister as ‘the devil’s spawn’, and refused to acknowledge her as our father’s child. My mother only speaks of having three In a daughter’s voice—A mental health nurse’s experience of being the daughter of a mother with schizophrenia

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children—my sister and I who grew up in the homes together, and my middle brother who spent some time in the corresponding boy’s home. Although the remaining four of us all have contact, our separate childhoods remain a painful issue. In effect, our family has been split into many disparate pieces. After my parents’ marriage breakdown, my father eventually moved interstate and we were only to see him occasionally during the rest of our childhoods. His absence was also a significant factor in our sense of abandonment. When I was about 12 years old, as the eldest (and therefore the responsible child), my father sent me a letter explaining that he needed to ‘go away’ for a while. He justified this by saying that he needed to do it as otherwise he might end up doing what his father did. His father had committed suicide when he was a teenager. Although I accepted his decision at the time, it struck me that I was being asked to sacrifice my own happiness and need for his love and care, in return for him remaining alive. A pattern of accepting emotional responsibility for others’ well-being—often at the expense of my own—was to have its foundations in these and other incidents over the years. By the time I was 4 years old, I had spent a short time in the first of three children’s homes, or religious-based welfare institutions, that I lived in. When I was around 8 years I went with my sister into a second children’s home and lived there with her, and then in a further home until I was 18. For me, both my mother’s mental illness and the experience of being raised in institutions are inextricably linked with each other. When I think of my childhood, it’s always in the context of both her illness and living in the homes.

Home, sweet home … ‘It is a most miserable thing to feel ashamed of home. There may be black ingratitude in the thing, and the punishment may be well-deserved; but, that it is a miserable thing, I can testify.’ (DICKENS, 1861)

During the relatively short time that I lived at home with my parents, there were some events that remain indelibly imprinted in my mind, although it has concerned me that I don’t seem to remember other parts of my childhood. While I lived at home, my mother was becoming increasingly unwell and made a number of suicide attempts, including cutting her wrists and putting her head in the gas oven. I’ll never forget finding her after one of these attempts. I was around 7 or so years of age at the time, and had been in the lounge room with my father. He’d asked me to go and look for my mother, as she hadn’t been seen for a while. I eventually found her in the bathroom, 88

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where she’d cut her wrists with a razor blade. The image of her sitting there remains vivid. While my father took her to the hospital we were sent over to the neighbours, where I remember my sister and I were given peanut butter and vegemite sandwiches. Although I normally had a very robust appetite, I felt quite sick and unable to eat them. One of the overall images I have of my mother during my time at home is that of a cold, aloof person. She discouraged any form of personal contact. Our grandmother recalled that she was like this even as a child. She was undemonstrative and, at most, would proffer her cheek to be kissed. She remains much like this today. Her remoteness and lack of warmth was to some extent offset by our grandmother, who was quite the opposite, being warm and affectionate. My mother was also very critical—I can’t recall her giving any positive comment about any of us. The best I remember her saying to me was that I was only average—in looks and brains—and would need to work hard to make anything of myself. As a child of course, I believed her. Consequently, I think that for much of my life the achievements and accomplishments I’ve made have in part been fuelled by the need to prove I was a lot more than ‘average’.

Lady Macbeth ‘Out, damned spot! Out, I say! One; two: why then, ’tis time to do’t. Hell is murky! (SHAKESPEARE, 1606,

IN

PARTINGTON, 1996: 604)

In addition to her bouts of psychosis, my mother also seemed to suffer some form of obsessive-compulsive disorder. She was fastidious about dirt and germs, and we were constantly in trouble for getting our clothes dirty or making a mess in the house. She cleaned the floors and other surfaces frequently. When I was about 5 years old, I had a ‘good’ dress for outings and wore it to another child’s birthday party and smudged chocolate on it. So that I wouldn’t get into trouble I hid the dress in the back of the cupboard in the hope that she wouldn’t find it. When she eventually did I responded to her verbal tongue-lashing in the way I apparently had a number of times before, and fainted in front of her. This seemed to be a rather effective way of dealing with her anger, as she then had to call the doctor and put me to bed as I usually sustained bumps and bruises from the fall. Although I didn’t completely escape her wrath, instead of just getting a telling-off, I received her care and attention. As an adult I have conflicting feelings about this memory. On the one hand I’m rather impressed with this ingenious way of dealing with a tricky situation, while also feeling sad for the child who was so frightened that she lost consciousness. In a daughter’s voice—A mental health nurse’s experience of being the daughter of a mother with schizophrenia

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Homekid we had our own schoolbus and lived in a big, dark old house we had kerosene put in our hair every Monday to stop the nits we ate tripe—whether we liked it or not we always went to church on Sundays we were second best we were homekids Living in the children’s homes was in many ways instrumental in defining my sense of self and my place in the world. As this poem reflects, at school we homekids were definitely considered second-class and second-best. The other kids seemed to view us with either mild derision or contempt, or just pity. Sometimes it seemed to be a mixture of both. I was often asked what I’d done wrong to be in the home. There seemed to be a perception that we were ‘bad’ or not as good as other children. Not surprisingly, I had very few friends during primary school. Throughout this time I was also often hungry, as the food we received for school lunch was, for me, usually inedible. It has taken many years to be able to say this, but I often trawled the garbage bins at school looking for other children’s leftovers. Essentially, I felt I was one of the worst things a child can be in comparison to other children—different. This has been one of the most difficult issues I’ve had to overcome as an adult. I’ve carried on what has sometimes seemed a relentless struggle with a lack of confidence in my abilities and a sense of being less than others. Although intellectually I know I’m very capable, I can still struggle with the notion, particularly when I feel unsure of the situation and/or the person. While my sister and I were in the homes, my maternal grandmother and my mother were regular visitors, particularly in the second home. These visits were definitely the highlight of our week. It was like being released from jail. However, the initial delight at leaving the home was to be replaced by despair on Sunday afternoons when we had to return. My grandmother recalled once that when she came to pick us up, I flung down the dishes I was drying and ran to hug her, and then cried copiously on return after spending the weekend with her. This cycle of initial delight and subsequent despair on return was to be a recurring pattern throughout childhood. I’ve had a difficult relationship with Sunday evenings ever since. They came to represent the ending of fun, warmth and family, and the beginning of another week of ‘work’ and fending for myself amidst a large mass of children clamouring for attention from a small group of staff.

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During most of this period, my mother was living in a small flat, first with her de facto partner, and later on her own. She was sometimes unreliable when it came to visiting on weekends. I remember one time when my sister and I, dressed in our best starched cotton dresses, patent leather shoes and socks with lace frills, were sitting on the brick fence at the front of the ‘home’ waiting for her to arrive. We waited and waited. We went through all the reasons she might be late and kept peering up the road, straining to see whether she was coming around the corner. We held out hope long after we knew in our hearts that she wasn’t coming. We had to, as the alternative was staying in the home for the weekend. Although she didn’t arrive that day, I’m grateful for the support my sister and I were able to give each other then. Even though we fought often, and tried to choke each other and pull each other’s hair out on a regular basis, our experience in the homes forged a strong bond of friendship and love between us. It also forged a shared, irrepressibly warped sense of humour. In fact, all of us, whether by virtue of genetic inheritance and/or as a way of dealing with difficult situations, are renowned for our shared sense of the ridiculous and enjoyment of ‘black’ humour. I suspect we have developed this ability in part because it has been easier to laugh at life than cry about it.

The famous five ‘Oh George—it’s good to see you again. Do you remember our marvellous adventures in the summer?’ (BLYTON, 1943)

Particularly during primary school years, reading books became a solace and a refuge for me. I was able to escape sadness, isolation and the lack of friends by burying my head in a book. My favourites were the series ‘The Famous Five’ by Enid Blyton. I loved the friendly, family atmosphere depicted in the books, and used to imagine I was one of the five who seemed to have lots of ‘jolly’ adventures and picnics (and perhaps I also related to the five children who reflected the five children in my own family). I was so renowned at school for my reading that I won the school Library Prize in Year 6, as by this time I had read practically the entire library. Generally, however, I didn’t do particularly well academically at primary school and was, I think, quite depressed during this time.

Some amazing revelations … ‘. . . let anyone with understanding calculate the number of the beast, for it is the number of a person. Its number is six hundred sixtysix.’ (NRSV BIBLE, 1989, P. 243)

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Over quite a long period of time, my mother’s health and consequent socioeconomic state eventually deteriorated. She moved around accommodation, ending up in a succession of boarding houses and bedsits. My sister and I continued to visit her some weekends. During these times, she would often make us sit in front of her while she lectured us with various delusions that often had a religious theme. We were required to sit motionless for what seemed like hours. She often told me to ‘stop smirking’ or to ‘wipe that smirk off your face’ while she was talking. Not actually knowing what smirking was, I remember spending a considerable amount of time trying to re-arrange my facial expression so it would no longer get me in trouble. One day my mother told us the dentist had implanted something in her teeth, and that at night he would turn on a machine that would cause her to feel pain. She also had ideas of reference with regard to newspaper items and cartoons. She would sometimes cut these out and tell us how they were written about our family. Another time she quoted from the Book of Revelations, claiming the reference to the number 6 was about our family (the six children). I used to puzzle over this, as I knew The Bible was written a long time ago and wondered how it, the newspaper and the cartoons knew (or, in fact, cared) about us. After these sessions, my sister and I would eventually manage to leave and return to the home, and once we got out of her place, look at each other and heave big sighs of relief that we were once again free from such bewildering (and slightly scary) monologues. Unfortunately, my mother was also paranoid about people in general, particularly the neighbours and people on buses. She claimed they were spreading rumours about her and/or knew all her business. This often ended in acrimony, and she was asked to leave a number of places she lived in.

I am a rock I am a rock, I am an island . . . and the rock feels no pain, and an island never cries (SIMON, 1972)

Sometimes when I was having a particularly hard time, as a child I’d lie in bed at night in the dormitory and imagine myself as having a solid core of rock inside my stomach. This was a part of me that kept me strong and helped me cope with sadness, pain or problems I was having. I knew I’d eventually get through them because I was strong inside. I also remember intuitively knowing I wouldn’t become ‘mad’ like my mother. I don’t know why I thought this, and I’ve found as I’ve gotten older that I’m less sure of my grip on so-called ‘sanity’, but at the time I think I was just reassuring myself that I wasn’t like her.

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On the other hand, however, the ‘rock’ also signifies another way I used to cope with sadness, despair and a sense of abandonment. I learnt to cut off from my feelings and presented a remote, serious exterior to others. I was often mistaken for being older than my age and was emotionally reserved with people unless I knew them well, a characteristic I still have. As a teenager though, I was torn between outrage and amusement one day when my grandmother told me a friend of hers had been looking at a photo of my sister and I, and pointed at me to enquire ‘…is that the mother?’ I was 15! Eventually, as I grew older, whenever I talked about my childhood it was in a detached way without experiencing any conscious feelings. Because of this intellectualisation, people would marvel at my apparent lack of concern and were not usually aware of the considerable impact my childhood had had. The ‘rock’ had indeed served its purpose as a child, but as an adult many sessions of counselling were needed before I was able to unravel the repressed anger and pain that sat beneath the remote exterior.

The years in the wilderness ‘And immediately the Spirit driveth him into the wilderness. And he was there in the wilderness forty days, tempted of Satan; And was with the wild beasts and the angels ministered unto Him’ (NRSV BIBLE, 1989, P. 33).

There are a number of years in my mother’s life that I have thought of as her wilderness period. After I started my nursing career, I had very little contact with her for some years. In fact, she told us she didn’t want to see us and was often rejecting of attempts to contact her. She eventually ended up without accommodation, and wandered the streets and rode the train system. She carried her belongings with her, and became a fairly well-known identity in the area. For periods of time she lived with my grandmother, who tried many times to get treatment for her. I tried to support my grandmother, particularly because at times she was afraid my mother would physically harm her. Eventually, after many years of suffering my mother was involuntarily hospitalised and treated. She was then discharged to live independently in the community, with regular visits from a case manager.

Pollyanna—a little ray of hope ‘I have never believed that we ought to deny discomfort and pain and evil: I have merely thought it better to greet the unknown with a cheer’ (PORTER, 1927, P. 1)

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Although I wouldn’t say I’ve greeted the unknown with a cheer, I’ve usually been able to maintain a sense of hope with regard to the future. This has been difficult at times, but throughout childhood there was always an optimistic part of me that kept looking forward. There was a sense of ‘sink or swim’ about dealing with the circumstances of my life, and I maintained a strong determination not to sink! I see this as one of the most important lessons I learned from my childhood. I suffered, but as an adult I had control over the quality of my life and was determined to have happiness and love and a sense of security that I did not have as a child. There were also some good times during my growing years, and I think these sustained me throughout the darker periods. Particularly when I went to high school I was fortunate to find a few good friends who offered down-to-earth friendship without pity (something I had come to detest as it reinforced my perception of being less than others). They shared their homes, their pools, their parents and sometimes their lunch with me. I will always be grateful for the friendships shared by these and other good friends along the way. So much of my upbringing includes these apparently contradictory elements. On the one hand, there is pain and sadness and feelings of loss and abandonment. On the other, the gift of rich and loving friendship and support from family members, friends and strangers, and the personal development of emotional strength, the ability to problem-solve, persistent determination, a curiosity and interest in learning, and a well-developed (if warped) sense of humour.

Empathy, resilience, strength, awareness— the metaphor of the flannel flower In 2000, the flannel flower was chosen as a symbol for awareness of mental health issues for World Mental Health Day. This Australian native symbolises both beauty and strength. It has to be adaptable and determined if it is to survive the extreme weather conditions it often encounters. Its soft texture encourages contact, and is thought to assist people to express their feelings and develop awareness and sensitivity (Mental Health Council of Australia, 2000). The metaphor of the enduring flower may be applied to my own situation. Although I’ve encountered adversity and experienced distress, it is my responsibility as an adult to find ways of coping and develop resilience in order to overcome any negative effects from the past. As I’ve grown into adulthood, I’ve carried mostly negative feelings about my mother with me. My fear and anger towards her for the circumstances of our upbringing have sat like a dark cloud over me. It’s only as I’ve ventured to process these feelings in counselling and dared to share my experiences with 94

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others that I’ve been able to see any positives in my situation and begin to view my mother through a different emotional lens. It’s been a revelation and a wonder to find so many other people who’ve struggled with similar experiences, and to receive compassion and respect from those who’ve listened to my story. It has been a remarkable experience to be able to share these previously shameful secrets. I cannot speak for other adult children, but I share my own experiences so that those who have had similar childhoods may in part be relieved of their burden of isolation and find a measure of hope, and those who work with us in a therapeutic and/or professional sense may understand some of the experience and the legacy it may have left. I also share this in recognition that the issues of one generation are often transmitted to the next. As a mother, I’m conscious that my experience will inevitably impact on my parenting, and part of my journey has been to ensure that this influence is as beneficial as possible.

Looking back, moving forward Putting kids first There are many issues that can be present, and many decisions that may need to be made in respect of children’s well-being when a parent(s) has mental illness. Some of the issues I would have liked help with as a child include learning to acknowledge and accept all my feelings and know how to deal with them, to have an adult whom I could talk to who would listen without judgement, who was on my side, and who would explain to me what was going on, and reinforce it wasn’t my fault and that I wasn’t responsible for fixing it. I see many of my resulting problems as having related to these issues. I would have benefited from someone acknowledging my strengths and helping me develop ways to cope with my vulnerabilities. As a parentified child who felt they had to always be good and do their best not to make things worse, I neglected to look after myself. An approach that recognises these potential issues and supports families from a strengths framework can offer a pathway for them to navigate their way through whatever difficulties (and joys) they might encounter.

Watch the therapeutic alliance In my work as a psychiatric/mental health nurse, I know that developing an alliance with a client is the foundation of the work I do with them. My mother has been fortunate to have case managers who clearly developed a strong alliance with her. However, the loyalty and concern they have had exclusively for her has been from my perspective, both detrimental to my needs and to my subsequent relationship with my mother. In a daughter’s voice—A mental health nurse’s experience of being the daughter of a mother with schizophrenia

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Not in any of my interactions with health professionals who worked with my mother do I recall their expressing specific concern and interest in us, her children’s, welfare. The emphasis was inherently on what we could do for her, rather than on any needs we might have. Although we were all adults when my mother finally received treatment, health professionals working with consumers need to be aware of the potential impact that parental mental illness may have had on adult children as well as current children—and that in all likelihood we too have suffered adverse effects as a result of our parent’s illness. This lack of awareness by case managers also has the potential to adversely affect the relationship between child and parent if resentment due to the child’s legitimate but unmet needs is perpetuated. Although I understand and appreciate the championing of my mother’s well-being by her case managers, I have been saddened and angered by the blindness to, and disregard for, my and my siblings’ difficulties. For those working primarily with parents with mental illness, considering the situation from the perspectives of children, adult children, partners and other family members will be appreciated. If it isn’t appropriate or feasible to work with them yourself, a recognition of, and empathy for their perspectives will be helpful, as would referral to appropriate resources.

Psychoeducation isn’t everything On a similar note, the benefits of using psychoeducation with family members of people with mental illness have been well-documented and researched. I have been involved in family psychoeducation sessions when my mother went back to live in the community after her extended hospitalisation. The emphasis in these sessions was on us gaining an understanding of her illness with the implicit expectation that we would then provide support and assist her in her recovery. This is immensely valuable for everyone involved. But it doesn’t necessarily take into account the child’s need to first express any anger, pain and unmet needs they may have. It is my experience that before you can offer help and support to your parent, you need to first be able to express your emotions and feel that your own needs have reasonably been met. This is particularly so if you perceive that your parent, whose role it is to raise you, has been unable to fulfil their parenting responsibilities in a nurturing and supportive way. The ensuing resentment that may be felt by children and adult children is significant and not to be under-estimated. If the psychoeducation sessions I was involved in began with a focus on my issues and needs, before looking at my mother’s, I think I would have been more receptive to the expectation that I be of help to her. At the time, I silently seethed that no-one seemed to recognise or care about her children’s experiences, instead being covertly or overtly 96

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critical of mine and my brother’s and sister’s reluctance to be involved in her rehabilitation.

Universality—a wonderful relief One of the hardest things to bear about being the child of a mother with schizophrenia was growing up with a feeling of isolation and being different to everyone else. Even as an adult who specialised in psychiatric/ mental health nursing and learnt the theory behind the illness, I still carried the personal shame and stigma of having it in the family. I have found the most helpful thing as an adult who has begun to publicly share her experience has been finding there are many others in very similar situations to me. Assistance can be given to a child or adult in the form of acknowledgement that they are not alone, and opportunities exist for them to share with others in the same situation whether it’s through literature on children of parents with mental illness, websites such as COMIC and COPMI, videos and groups if they’re available (or perhaps start one if they’re not!). Referral to support agencies and/or therapists may also offer a wonderful benefit to children or adults who may have previously managed their issues alone. A ‘buddy’ system could also be used whereby older children and/or adults who are further along the way to understanding the issues are paired with those who would benefit from peer support.

From small things, good things grow Some years after I began my nursing career, I eventually worked up the courage to have counselling to address some of the issues I carried from the past. I had two different therapists over varying amounts of time. One of the issues I grappled with when I saw the first of these therapists was intellectualisation. I wasn’t ready to deal with a lot of my feelings and spent much of the time focused on gaining an understanding of who I was. But later when I was ready, the foundations had been laid so I was able to start working with my feelings with the second therapist I saw. I have often wanted to say to my first therapist (to whom it may have seemed unlikely at the time), that I gained a lot from their gentle and patient support and probing. It helped me through a difficult time and enabled me to gain the confidence and trust in therapy (and therapists) that meant I would later return with the strength to do the more difficult work. For those working with children and adult children, the seeds you sow may not be immediately obvious, and a lot of time may pass before you see any results (if you see any at all). But be assured that your patient and persistent support, as well as non-judgemental and gentle confrontation, does leave its mark and is worth it. In a daughter’s voice—A mental health nurse’s experience of being the daughter of a mother with schizophrenia

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References Blyton, E. (1943) Five Go Adventuring Again, London: Hodder & Stoughton. Dickens, C. (1861) Great Expectations, Ringwood: Penguin. Mental Health Council of Australia (2000) Empathy, resilience, strength, awareness, postcard. NRSV Bible (1989) Mark 1: 12, USA: Collins. Porter, E.H. (1927) Pollyanna, London: Penguin. Rosner Blay, A. (1998) Sister, Sister, Alexandria: Hale & Ironmonger. Shakespeare, W. (1606) Macbeth Act 5, sc1, 1 [38], in A. Partington (ed.) (1996) The Oxford Dictionary of Quotations (revised 4th edn), Oxford: Oxford University Press. Simon, P. (1972) ‘I am a rock’, on Simon & Garfunkel’s Greatest Hits Album.

Websites COMIC: Children of Mentally Ill Consumers www.howstat.com.au/comic COPMI: Children of Parents with a Mental Illness and their Families www.aicafmha.net.au/copmi * Parts of this chapter are based on a paper presented by the author and published in the conference proceedings of the 27th International Conference of the Australian & New Zealand College of Mental Health N u r s e s ( A N Z C M H N ) ( 2 0 0 1 ) , M e l b o u r n e , A u s t r a l i a , 1 – 5 O c t o b e r.

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A psychoanalytic perspective

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CHAPTER

Who am I? ‘Madness’, my favourite pop group, split up a long time ago1

9

FRANCES THOMSON-SALO

This is a fragment of the life of an 11-year-old boy whom I shall call Mark2 and whom I treated for three years. At the age of 234 years, when his mother had became too unwell mentally to look after him, Mark had been placed in a children’s home in England, along with his sister and brother. He was then adopted at the age of 10 years, but within a couple of months his adoptive parents referred him for assessment. Mark’s story may not be typical of children with parents who are mentally unwell, but being a story from the inside of a boy’s struggle to understand what it meant for him and for his mother that they shared a history in which she had been so unwell, it may illuminate some of the inner world of other children. Mark’s underlying wish to ‘say no’ contributed towards the initial difficulties in his adoption. There were other difficulties. Mark’s history was one of considerable deprivation: at age 234 years he was placed in a children’s home when his mother became psychotic, and he remained there until he was 10 years and 2 months. He was then placed for adoption with a middle-class white couple who offered a stimulating home environment. They also had a 12-year-old boy whom they had adopted from birth. Mark’s adoption was transracial, with all the potential difficulties inherent in such an adoption. The importance of Mark’s relationship with his sister and brother who had been in care with him was not considered of high enough significance when he was placed for adoption, and the separation from them when each was individually placed was traumatic. For a long time this stood in the way of Mark becoming attached to his adoptive parents, the Ws. To his therapy Mark brought his sadness about his siblings and his anger, and then his fear of

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rejection. His need to ‘test’ meshed adversely with the Ws’ difficulty in tolerating his behaviour. All this was taking place against a backdrop of trying to work out his identity as a child with a mother with serious mental illness.

Background Information about Mark’s childhood is limited. His mother, Claire, and her husband, Abe Smith, were originally from Africa. After the birth of their fourth child the marriage deteriorated when Mrs Smith had a psychotic breakdown. She reported having had a vision of an angel who told her to have seven children before she was 30 years old. She did so, and the three youngest each had a different father. Mark was her sixth child. Mrs Smith was in a confused state at the time of Mark’s birth, and consequently gave him six names, some of them Asian and one, James, which was thought to be his father’s name. Mark’s birth was normal, and his mother began breastfeeding him in hospital. His milestones were said to be average. When he was 8 months old, Mark’s older half-siblings went into care, while he went with his mother to Africa for 5 months. When Mark was 21 months old, his brother, Murray, was born, and in the following year his mother again deteriorated. She is reported to have kept the children indoors in case something happened to them outside, frequently tying them in their high-chairs and cots for long periods, leaving them lying in their faeces, and feeding them inadequately. Mrs Smith’s mother, who lived nearby, was thought to have tried to provide some stability in the children’s care. When Mark was 234 years, he and his 5-year-old sister, Marsha, were taken into care, and a month later they were moved to their permanent children’s home. Two weeks later, their younger brother, Murray, joined them. Their mother recognised that she could not provide a home for her older children, and quite quickly agreed to their being fostered, but until Mark was about 9 years old she appears to have hoped that she would be reunited with her three youngest children. Mark was said to have settled in to the children’s home and playgroup by the time he was 4 years old. His mother visited about every 6 months; she was described as unresponsive and Mark as not very involved with her. He started school when he was 5 years old. Mark’s school reports consistently referred to poor concentration, destructiveness and periodic rebelliousness. He seemed quickly to demonstrate the characteristics of a deprived child: being aggressive, going easily to strangers and possessing a certain charm. Adults described him as ‘terrific’ in a one-to-one relationship. But any new situation or person upset him. With other children he was initially aggressive so that at first they disliked him but gradually grew to respect him. Mark’s relationships with his siblings were complex. When he was about 3 years old, there was little affection or closeness in his relationship with 102

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Marsha and Murray, more often aggressive attack. But by age 5 years he was said to have a good relationship with Murray and to have become very protective of, and patient with, him. Mark enjoyed helping Murray to dress and showing him how to behave at meal times. By the time Mark was 734 years old he was said to get on well with Marsha too, and would be very hurt if Murray did not want his company. Mark clearly voiced his wish not to be separated from them. For about the next two years, the situation remained constant. The sibling trio continued to be close and played well together, with Mark as the organiser. He tended to become upset when Murray tried to get him into trouble, but Marsha could always be relied upon to set the record straight. She was described as very much the older sister to whom he looked for consolation when in trouble. In the official reports, Mark’s close relationship with Marsha and Murray was not especially highlighted. Nor was his anger and sadness that when he was 934 years Marsha was placed in a foster home hundreds of miles away. Rather, he presented as coping well with Marsha’s move and being very supportive of her. Three months later, Murray was also fostered, equally far away. Mark’s social worker thought that Mark wanted ‘desperately’ to have a family too, and the W family was found. The Ws were a pleasant, enthusiastic couple in their mid-30s. Rachel W worked full-time as a paediatric nurse, while Pierre W was a graphic designer. They had not previously felt settled enough to adopt another child, as they had been living overseas. Their relationship with their older adopted son, Ronnie, seemed unproblematic. The Ws knew about the difficulties in adopting older children, but were confident that they could manage. They were agreeable to keeping some contact with Mark’s mother, who was then living, with support, in the community. Mark was introduced to the Ws, and after visiting for a month moved from the children’s home in the countryside to live with them in their town flat. Almost immediately he started a new school. Everything that had been familiar to him, the people connected with the children’s home, his school, religion, the known environment and most of his possessions was lost at a stroke.

Diagnostic assessment Within a couple of months of Mark starting at his new school, the Ws asked for an assessment, concerned about Mark’s tendency to be too easily distracted, his aggressiveness and his unsatisfactory peer relationships. His

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early deprivation seemed to have distorted his development, in some respects resembling that of an institutionalised child, although able to show much warmth. There seemed no evidence to suggest a psychotic tendency inherited from his mother, but it was thought to be a possible contributant to the uneven personality development and restless impulsiveness. The latter might also have been an identification with his mother’s behaviour in the early years. Mark’s test results suggested that he was potentially of above-average intelligence but was ‘underfunctioning’. It was thought that twice-weekly help would not interfere in the formation of relationships between Mark and the Ws, and it was decided to offer him this, and parenting guidance from a social worker for the Ws, in order to help them understand Mark’s predicament. Mark was unused to ordinary family life, and despite their encouragement to talk over his feelings about the adoption, he was unable to do so. I saw Mark in twice-weekly therapy for three years.

Therapy in the shadow of sibling loss The attractive boy I met sat in almost total and empty silence. When I spoke his replies were cautious. Eventually he wondered if it would be all right to draw, and when he did, he was very deprecating of his considerable talent. From the beginning there was both a hint that Mark wished to belong to the W family—in particular to be like his adoptive father—and of sadness about the separation from his siblings and the children’s home, although he tried to avoid thinking about this. Memories to do with loss and change were impaired. ‘I can’t remember what the children’s home looks like, because I haven’t seen it for more than a year,’ he said, although he had only left it 5 months earlier. Mark frequently lost his belongings, and would leave things in the therapy room as though he wanted me to hold onto them. At times, he seemed unable to retain what he had been told. This was all the more striking, as his good memory had been specifically commented on in the children’s home reports. In the fifth week of therapy, Mark was excluded from school for the remaining 10 days of term, following an episode in which a boy had said he would kill Mark. In the ensuing fight Mark had ground his shoe into this boy’s face and had broken a front tooth. Mark showed no remorse, but when he came to therapy wearing a pair of secondhand shoes we could begin to talk about how he felt himself to be lacking in value. Although he did nothing as violent as this subsequently, therapy was to be punctuated by reports of other impulsive behaviour. After the Easter break, Mark brought in a watch he had received for his birthday, and told me, ‘This morning the time disappeared.’ The phrase ‘time 104

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disappeared’ became a catch phrase for us to refer to Mark’s experience of what it was like to forget so much of his history. At this point, when he could not remember some fact about Marsha and I suggested, ‘Time disappeared?’ he immediately replied, ‘Yes. I’ve not seen her for so long. I can’t remember.’ (In fact, he had seen his sister 2 months earlier, when she had visited him. Marsha had sat holding Mark’s cat for a long time, the cat that he had brought from the children’s home, and talked about how unhappy she was in her foster family and how she wanted to be with him.) On a painting of himself, Mark ‘splodged’ his face and his new surname. From another series of drawings he seemed to feel that if his aggressive wishes emerged fully, they would mess things up, and he tried in his drawings to ‘splodge’—obliterate —the evidence of these wishes. The week before his adoption was finalised, Mark drew a picture of a boy at the bottom of a chasm in danger of drowning, calling for help. The boy had tied a rope to a tree but the branch was bending and the rope would slip off; however, the tree’s roots would drink up the water, the boy would be saved and the tree would then blossom. When I talked of Mark’s sadness and wish to put down roots, he smiled, looking vulnerable. His feeling of being abandoned emerged when he drew on black paper an angel flying off forever after it had left food for some ants. Mark brought in the photograph taken after his adoption was finalised. In it Mark’s lips were pursed. He had some other photographs, including a picture of his biological mother taken with Marsha’s foster family, and he planned to send his mother a copy of his adoption photograph. These photographs were virtually the only physical link he had with his past, and he began carrying them around. In the following month, Mark’s feelings of disillusionment with the Ws were increasingly displaced onto me. There seemed to have been a fantasy that the adoption would change things and end all feelings of deprivation. During sessions there were indications of a search for an idealised, all-providing mother figure; he felt that his adoptive mother, Rachel, and I withheld supplies. Mark helped himself to biscuits and wandered into other rooms, looking for Pierre. When I suggested that sometimes there was someone he wanted to see again, he agreed and drew a queen bee and her honey hive. Before a half-term break, he made a toy tractor say to a truck, ‘Don’t let me go ... it can’t hold me because it’s being pulled off’. After the break, he had forgotten on which days he was to come for his sessions. In his play, aeroplanes bombed my ships; at the same time, however, he felt he could not convey to Rachel any of his anger. After I put this into words Mark seemed to view me as someone who could take care of him. He asked me to read to him and leaned a little against me, twiddling his hair like a toddler. He told me: Who am I? ‘Madness’, my favourite pop group, split up a long time ago

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‘I never wanted a family, it was not my idea, it was Marsha’s.’ He thought one of the social workers had promised to place the three of them together. His idea now, he said, was to go back to his mum. In an enactment of this wish to return to an idealised family, Mark wore for the first time a shirt with palm trees and told me his mum came from Africa, that she was well again and he could go back to her. I thought it important to explain as clearly as possible that while his mother was better, in that she was off medication, she was not really able to look after him. He listened intently as I did so. My emphasising the impossibility of his being reunited with his mother underlined the loss of his siblings, and the sadness about this developed slowly over the next few months into something like mourning. But what could also be observed was that the relationship with the Ws seemed slowly to be growing during the year that he had been with them. Mark seemed genuinely kind and concerned when Rachel sprained her ankle, and he began to call Pierre his dad. Once, when he felt I had understood what a confused and angry little boy he had been, he arrived 2 days early for his next session. But he could also see me in the same light as he viewed his social workers, as people who coerced other people. ‘They ask you questions, get to know you and then decide what they want to do’; that is, they split up children who want to stay together. He felt tricked when I disappeared for the summer holidays, and for a period constantly tricked me. He drew a face and trickily made it disappear. He could then tell me that he thought that his mother had had Murray while he was in the children’s home, as though she had tricked him and put him in the children’s home in order to have Murray. Mark had thought of running away from the home but, ‘let’s face it, it wasn’t worth going all the way up to town’ (to return to his mother). ‘Women especially trick people,’ he said. Whenever Mark felt he was being abandoned I would find myself at times not knowing whether I was being lied to or not. By now, aged 1121 years, Mark was in high school. The Ws had placed him in Ronnie’s school, and from the beginning Mark found it hard to cope. He was soon placed in the school’s Support Unit with a very sensitive female teacher for 10 hours per week. There was a depressive colouring to his affect at times. Mark trudged to and from therapy, and then he began not to come. I struggled to salvage what I could of school and of therapy. He struggled to turn towards new ties with the Ws. He felt secure enough to tell Rachel that it was not he who had wanted to come out of the children’s home, it was Marsha, but he said that Rachel had not really believed he was that sad. After learning of the next therapy break, he was suspended from school for 2 days, which was to become a common pattern. He spent the first day of his suspension looking at his photographs but found, on balance, that he wanted to stay with the Ws 106

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more than he wanted to leave them. The Support Unit teacher told us that he adored Pierre, the father he had always wanted. Mark began to explore some concerns about his mother’s illness and whether he would be like her now. Work on this was unsettling; there was an impending half-term break and he was again suspended for 2 days for climbing over the fence of the nearby girls’ school. Mark talked at length— uncharacteristically —about his feeling of being cheated by life. He was angry with those people who said that they were going to help, like his teacher, but who told him off instead. I was the same. He said he would be expelled if there were any more trouble. Rachel had felt tested to the limit and had responded by joking that if Mark went on being difficult he would have to go to boarding school. His anxiety and anger were clear. When I talked about how he might be thinking, in the midst of his school difficulties, about a new placement which would reunite him with Marsha, his feeling of being placed against his will surfaced more fully. He described how, on first meeting the Ws, he was asked by his social worker whether he wanted to go to them or not. He challenged me, ‘I couldn’t say no, with them standing there, could I? I didn’t know whether I liked them or not.’ And when, later, Mark had been considering what to say to the judge of the adoption-order hearing, Rachel had said, ‘You’d better not say no.’ Mark conveyed his dilemma about what to say by twice asking me, ‘What would you say if it was you?’. He declared passionately that he wanted to be with Marsha and Murray, but he nevertheless felt sufficiently part of his adoptive family to be in conflict. At this point, having been with the Ws for about 18 months, Mark was able to directly express his anger with Rachel rather than keeping it in, after which he used the words ‘my mum’ for the first time when talking about her. The interference with memory was now less marked, and he did seem not to be losing quite so many things. Becoming slightly more attached to the Ws meant having to relinquish a little more the fantasy of being together with Marsha. He wore a badge with the letter ‘M’ on it and told me that it stood for his favourite pop-group called ‘Madness’, which had split up a long time ago. He agreed that the sadness about the separation from Marsha, who had been a substitute for his ‘mad’ mother, had made it difficult to settle in with the Ws. At about this time Mark learnt that Marsha was much happier in her new home. He had always known that Murray had taken to his adoptive family from the beginning, and once said with an indulgent smile that you could not blame him because he was young. Mark did not mention his siblings much after this, although he did once ask, ‘Why don’t you talk about Murray? Don’t forget about him,’ as though enlisting my help not to lose his image. In the Who am I? ‘Madness’, my favourite pop group, split up a long time ago

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next summer holiday Rachel described Mark as having been fantastic, apart from an occasional outburst, such as that which occurred when a social worker had telephoned without warning to arrange for his mother to visit, and this had thrown Mark into enormous conflict. When sessions restarted he wanted to take Rachel some apples from a tree where I worked. Back at school, struggling with high school work, Mark’s provocative behaviour reappeared there, and in therapy. When I eventually took it up in terms of his wondering whether he was mad in the way that he considered his mother to be (or bad like his father, whom he thought could well be a drunken idiot) and how hard it was when he knew so little about them, he became calmer everywhere. Soon there was a wooing quality, a warm concern and curiosity about me. He asked if I watched a particular TV program, saying, ‘It’s about men stealing other men’s wives.’ He then asked if I was married and dejectedly said, ‘I’m too small to be married’, and abused other adults whom he saw as rivals, as ‘idiots’. He caringly watered my ‘cactus babies’. His school said that he was ‘softer and more benign’ and was using words like ‘right’ and ‘wrong’ for the first time. The next step would have been for some of this behaviour to generalise to home. But whereas he had always admired Pierre and wanted to rival his skills in graphic design, Mark’s relationship with Rachel was more ambivalent, and he found expressing his wishes much more difficult. At the same time, he was under increasing pressure at school, which he could not handle, and over the following year the Ws began to give up on him. That he had to be the one to make contact with Marsha, and that she had not reciprocated, was a source of disappointment. When he was 1221 years old, at the time just described when I thought he had turned a corner with the Ws, Mark sent Marsha a Christmas present but forgot to send his biological mother her present. He heard nothing from Marsha. After that, when the going got hard in the following year, he was thrown back to thoughts of returning to his mother, or his friends at the children’s home; or even the forlorn hope of a reunion with his father. In his final session he thought about sending Marsha and Murray Easter eggs and said, ‘If I admitted I was sad I’d be split apart. It would mean I was the only one who cared’. But he could also say that ‘life is in better condition’ than when he was 10 years old. He said of me, ‘You’re sometimes wrong about the little things but not about the big ones.’ I thought that seeing me in a positive light as an ally was based on his loving attachment to his sister. It is clear that Mark was unable for a long time to share with the Ws how helpless he had felt to prevent the sibling breakup, just like the original loss of his mother. He had also been unable to share the helplessness he felt about

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the rushed arrangements for joining them. When he was faced with the move from his high school to a special school for children with problems, all these earlier traumatic feelings were revived, resulting in a further spiral of acting out which overstrained the adoptive parents. Another obstacle to Mark’s attempts to adapt to family life was his conflict over dependency. He had many reasons for struggling against his dependent wishes. There was, firstly, his history of the loss of many important people: separation from his mother (and grandmother) when he was 234 years, and from his siblings when he was about 10 years. Secondly, there was his experience in a children’s home, where there was a high turnover of both staff and children, and, on leaving the children’s home, the loss of everything which had till then been familiar. Thirdly, there was the early adolescent conflict, arising from the wish to hold onto significant people, which is at the same time felt to threaten regression.

Anger and the wish for revenge In therapy Mark brought a considerable degree of anger towards social workers, Rachel and his mother; his anger towards Marsha for wanting to leave the children’s home was, I thought, also displaced onto them. His anger with his social worker stemmed from her failure to place the three siblings in one family. He was probably also responding to her for feeling vulnerable, in that being placed with the Ws exposed him to difficulties in adapting to family life and to the fear of being rejected. He brought a revenge fantasy of throwing his social worker into the middle of a lake and drowning her. Mark’s anger with his mother seemed to centre mainly around his feeling that she had tricked him into going into a children’s home, and his worry that he would become mad like her. He once drew himself as a 4-year-old boy in a children’s home: the staff were shouting at him and there was a bubble coming from his head in which questions were written. This was followed by a picture called ‘Home Sweet Home’, of a large house for a large family. We had been talking about how his mother was not able to have him back. As he drew, Mark suddenly said that the house was on fire, and the owner had made everyone leave. I suggested that when he was little he had not been able to understand why he was in the children’s home and not with his mother, and felt very cross with her. He arrived 2 days early for his next session and told me that he had once done something naughty. ‘I made a bonfire and put Guys [Fawkes] and mummies on it, and put stink bombs on the mummies’. When concerns about his mother’s illness were to the fore, he wondered how he himself would turn out, and was angry about having this worry. He modelled a plasticine head which had to have injections and went to hospital for operations. He said he did not know why his mother had gone to hospital.

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He then sadistically attacked the model, and, displacing his anger from his mother, blamed me for all the bad things in his life.

Forgetting Another child I treated, who had also been adopted, said, ‘You have to remember so much harder when you’re adopted.’ This disturbance of memory seemed partly to protect against angry and aggressive wishes. At the start of therapy, Mark seemed to have no sense of continuity in his past. He could not remember the days of the week or what had just happened; he frequently lost his possessions. The fragmented care he had experienced would make it difficult for him to have a coherent picture of the past. There must also have been several occasions when he felt rejected, which he would have wanted to try and forget. Marsha and his mother seemed to have forgotten him, and the image of Marsha was on the point of disappearing at the start of therapy. He was in effect losing himself and his possessions, as he felt lost by his parents. But one crucial determinant in his forgetting was surely the conflict about aggressive wishes, with the result that images of people who were once loved, and pleasurable experiences associated with them, were withdrawn because of anger at having been given up. An additional reason for forgetting may have been that, as part of coming to terms with having been given up for adoption, Mark had the fantasy that he had somehow provoked or deserved it, that it was his aggression or sadism that had led his mother to dispose of him. (This was illustrated by the model head, which Mark attacked, and his subsequent idea that his mother had died.) As Mark was able to express something of his anger with his mother, his memory began to improve. The anger, however, that he felt about his early experiences continued to have an organising function in his inner life, so that he appeared to be developing a permanent grudge.

The fear of rejection Any older child who joins a new family has almost certainly experienced the break-up of a family and therefore has a heightened fear of being rejected by the new family. Since the child will attribute some of the ‘blame’ for earlier experiences to some defect in himself, his anxiety about a placement is probably not just ‘Will they want to keep me?’ but, ‘Am I wantable?’. Mark explored a little of his thoughts and fantasies as to why he had been removed from his mother and why his father had not stayed to see if his son was someone ‘of value’. In addition to his aggressive and angry wishes, he thought his messy wishes and ‘bad thoughts’ might contribute to his being unwantable. 110

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At a time when Mark was concerned with the nature of his mother’s illness, he told me that a boy had said, ‘Your mother’s ill and you’re nutty and mad’, and that another boy did not dare be friends with Mark because Mark was bad. I took this up as Mark’s anxiety about whether he was mad or bad. Subsequently, Mark expressed the belief that I was bored with him, and that I saw children only for 50 minutes in order to avoid getting bored. His play was rather toddler-like, putting water in a toy truck, drinking from it and tipping it out. I suggested that he might have felt, when his mother became ill, that she was bored with him for his messiness. Mark seemed to feel that neither his mother nor anybody else could stand him. He said, ‘The children’s home staff worked shifts because no-one could stay all the time. And Rachel and Pierre were always saying, “We’re terribly bored with you, go and play in your room.” ’ After this, Mark talked of remaining in therapy for a long time. And whenever Rachel referred to boarding school, the anxiety behind his attack on her for being ‘inconsistent’ was transparent. Much of Mark’s difficult behaviour could be understood as a testing out to see whether he would be rejected, or rejecting before he was rejected. When, after 2 years of therapy, he became extremely provocative—for example, in one session he broke a tumbler, threatened to throw a glass ashtray out of the window and finally threw a pouffe out—his question was always whether I would stop therapy. And when I made it clear that I would do my best to protect things but would not stop therapy, there would be a temporary respite before the next attempt to see if I meant it. However, trying to limit this provocation to therapy was almost impossible because of what was happening at home.

The need for continued parental tolerance of provocation It had only been a matter of months before Mark’s excellent adoptive parents began to express their impatience with how long his difficulties were persisting. They had felt that provision of a stimulating and materially attractive home life would be enough to help Mark adapt. They did not tell his high school anything of his background until several months after he was placed in the Support Unit and still kept coming to the attention of other staff members. The Ws were irritated when he lost things and was disorganised, when he lied to get out of trouble, and when he was suddenly aggressive. They found it hard when he found it too much to share, to cope in a group, to make real friendships, to resist being easily led. They could not bear it when he acted as though he were extra-special. Meeting the needs of the young children for whom Rachel was responsible left her feeling drained, and she came to feel that she had nothing more to give to meet Mark’s infantile needs. The Ws had Who am I? ‘Madness’, my favourite pop group, split up a long time ago

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been faced with the dual task of his needs as an older child placed for adoption who needed time and support to settle and as a child with delinquent tendencies who also needed time and support to give this up. After Mark had been with the Ws for 212 years, they felt unequal to the task. When the headmaster began considering a transfer to a school for children with problems, Rachel felt she could no longer fight on Mark’s behalf, and went along with the transfer. Mark was resistant to the idea of transferring, and felt pushed around again. His school consented to keep him for a trial period, to see whether he could manage to get back into normal lessons and do without the Support Unit. The special school would not accept him after he was 13 years old, which meant an imminent deadline. Mark’s mounting anxiety and anger could be seen in his behaviour. This only confirmed Rachel’s and the headmaster’s feelings, which Mark in turn responded to with further difficulties. Rachel feared he might end up in a correctional institution. Her wish for a less problematic child began to surface, and simultaneously the adoption social worker said that Mark had been special for long enough and it was time for this to stop. When Mark visited the special school, he felt that the children there were overtly disturbed in a way that he did not feel himself to be. He told me, ‘You’re the only one who tells me things, long before my parents do. If I hadn’t been coming here (to therapy), it would all have happened and I’d be there and I wouldn’t know I could have asked questions and protested.’ In the end, despite representations from some of his teachers and peers who did not want to see him moved, he went without protest. Mark had wanted to stop therapy from the beginning of the third year, in part as a test of my commitment. Eventually, an ending date was set for the end of the year, which would have allowed a settling-in period at the special school. What was unforeseen was that the social worker at this point placed a 2-yearold black girl, Tracey, for adoption with the Ws, and that Rachel gave up work to be at home with her. In this way, just prior to gaining another sister and again becoming one of three ‘siblings’, Mark was moved from his high school where he had wanted to stay, to another one, and he also finished therapy. These events seem to have stirred up memories of his siblings and the children’s home, and reminded him of the earlier losses. (A follow-up 2 years later indicated that he was still extremely jealous of Tracey.)

His view of himself I think something of Mark’s view of himself will already have emerged. It was striking how, on an occasion when he was talking about his mother’s illness, he burst out with the thought that therapy would help him find out ‘who I am’. 112

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Mark said little directly about transracial adoption. When he once drew himself as a young child he drew Caucasian features, and I wondered whether the white staff of the children’s home had been able adequately to mirror back to him his image as a black child. When concerns about his biological father came to the fore in therapy, he wanted to be near the black window-cleaner in school, saying that he was his dad and, in justification, that ‘he looks more like my dad than my dad [Pierre] does.’ When sad about having lost his father, whom he thought was black, Mark once swaggered, ‘I hate white people because they thought I was no good and I was the best.’ Where there are no memories to construct a representation of an absent parent, it seems a universal need to construct it somehow. When one parent is mentally ill, the need to construct something about the unknown other seems very important. Mark knew something of his mother; the main gap he was trying to fill was what his father was like. For a long time he thought that his mother’s husband, Abe, was his father, whereas Mark was in fact the child of Claire Smith and an unknown man named James. Mark said he had been told nothing and that he did not think about it. When he told me that his father’s name was James and his own second name was James, I suggested that telling me his name was an attempt to remember his father, and Mark agreed. ‘Yes, I remain, that is, I would look like him, wouldn’t I?’ All he had left of his father was his own body, as a basis for constructing some representation of him. He asked me to repeat my comment that the ways in which he looked different from his mother would be the ways in which he resembled his father. When in pre-puberty Mark became taller and his chest filled out, his thoughts turned again to his father. He exclaimed that he wanted to find him—except that he might be a drunken idiot, or like the neighbourhood tramp, or dead. He wondered if the Ws could be asked if they had more information without telling them that he wanted to know—‘They’d think I was ungrateful’. Next, he decided that his father was Asian. In the end he went back to his own body; he thought from the colour of his skin that he must have had a white father and that when his moustache grew he would look like him. Mark’s adoption papers, if he asks for them, will confirm that his father was thought to be white. Mark then tried to come to an explanation about his father’s ‘disappearance’. He told me some prostitute jokes and gradually brought forward the thought that his father must just have wanted ‘a good time’ with his mother. He brought a copy of a soft porn magazine, Face to Face. There was then an enactment in which he brought a considerable amount of money (to buy me) and fleetingly exposed himself at the end of a session before running off. I said he couldn’t do this again but we could talk about it, and I interpreted Who am I? ‘Madness’, my favourite pop group, split up a long time ago

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it as his attempt to create in a concrete way an image of what his father was like. There were no further enactments, and he discussed with me whether to persevere in writing to his mother to gain some information. He subsequently came in, saying ‘Guess what the good news is. It’s something to do with here and it begins with the letter “d”.’ His mother had written to him saying that his dad had red hair and she would send him a photograph of someone who resembled him, as that was all she had. In this way Mark seemed to construct a representation of his father and an explanation of why he did not stay to see whether he turned out to be worthwhile. In thinking of his inner world, I would like to end with a question: for a boy like Mark with his history, is there ever a time when he should stop being special?

Postscript When Mark was 1512 years old he returned for a few sessions and explored with me the prospect of making contact with his biological mother, which had by then lapsed. I next heard of him when he was 17 years old, when Rachel telephoned and was highly enthusiastic about Mark, whom she described as ‘a success story’. After Mark had finished at the special school, Pierre arranged a Youth Training Scheme (YTS) placement for him in town. The Ws had just moved out to the country, but Pierre thought that Mark would be with some black youngsters. Mark did not initially take up the placement but was in trouble with the police. He was arrested for being part of a gang which broke into a car but he got off because he had not actually done the job. Rachel was downto-earth about what had happened and said that he still had the option of ‘behaving and coming home’, which he did. He took up the YTS placement and did extremely well. After completing the 6 months’ college course he gained a placement near the Ws home, rebuilding an old barn. In his spare time, Mark competently completed several projects: he laid a patio for Rachel and rebuilt a fence. They were amazed at his skill and tenacity, and Mark enjoyed their praise. At weekends, Mark frequently stayed in town with his biological mother and/or relations. She had now a large extended family of aunts and uncles who made Mark welcome. Several of his siblings also rallied to support her. Marsha, who had walked out of her foster family, had had a baby and the W family had visited, and Mark was proud of his niece. Rachel said that she had learnt, however, that Mark should not stay longer than weekends with his mother, because when he did, he became part of the gang. Rachel was pleased to report that his black family had been furious with him about the delinquency, and said, ‘They tell him straight’. 114

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Mark has said that he does not intend to move away from the Ws, and Ronnie has also moved back with them. Delighted, Rachel asked, ‘Will I ever get rid of them?’ and said that she had to admit that she would be sad if Mark left. If he seemed troubled she suggested that he return to talk, and she expressed her gratitude for the help that they and Mark had received. They seem to have found, in the open adoption that they achieved, their answer to the questions about the kind of placement which Mark needed. And while we cannot know with certainty how his search for cultural identity has progressed in the intervening years since therapy, it appears as though, in his being able to stay part of both his families, he has been able to achieve some integration in this. Notes 1

This chapter is adapted from a paper, ‘Well, I couldn’t say no, could I? Difficulties in the path of late adoption’, published in the Journal of Child Psychotherapy in 1991.

2

The names have been changed in the interests of confidentiality.

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10

M A R E L L LY N C H a n d J O LY O N G R I M W A D E

‘Lucy came into care last night and she is very worried about her mother who has gone to some psych. hospital. I can see she needs to talk, but I don’t know what to do. I need some tips and I need them quite urgently. Is there something I can read, even?’ Unfortunately, this situation can happen. A child is at risk. A parent can’t cope. Help is needed for both, urgently. Sometimes they are separated; usually the parent finds appropriate help. Often the child cannot even begin to know what is going on, and does not want to ask for help. This chapter is about such a scenario and a service that developed expertise in responding to these sorts of crises.

Introduction Children of Parents with Mental Illness (Cowling, 1999) presented several excellent and focused articles by parents and workers about ways of helping children understand and process the experience of living with a parent with a mental illness. Absler (1999), in particular, described a format, a process and a position for the thoughtful discussion of a parent’s mental illness with a child or adolescent. The following endorses all that Absler described, but goes one step further back in time, to when the child is found to be in need of care and protection, and the particular needs and worries of the child are not known.

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CHAPTER

Listening to the child and structuring a future for children placed in out-ofhome care who have a parent with a mental health issue: the Royal Children’s Hospital Stargate program

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Madeleine Kelly (1999) (also in Cowling, 1999), a parent with a mental illness, interviewed other parents and children about the parent’s role in helping their children understand mental illness. Kelly quoted from the Burdekin Report: ‘Clinicians can no longer assume that having a psychiatrically ill parent has to place a child at risk’ (Human Rights and Equal Opportunity Commission, 1993, p. 499; cited by Kelly, 1999, p. 62). This is a warning that we strongly endorse, but the Stargate program demonstrated that children of parents with mental illness do come into care. One more issue needs to be heavily emphasised: children of parents with mental illness have interpersonal, social and moral concerns. They do not, usually, have mental health problems, although they can be at risk. Careful and compassionate assessment can help give voice to the child’s needs and worries, as well as identify his/her strengths. Giving voice and advocating for these needs can be done by a respecting, trustworthy adult prepared to listen. The techniques used by Stargate (Milburn, Salo & Lynch, in-press) to determine needs, strengths and worries of children entering out-of-home care for the first time will be described, along with other evaluation protocols. The purpose of the chapter is not to turn every reader into a clinician. Rather, it is to assist the carer and other workers in determining what the child’s needs and worries are, and to provide a framework for communicating what has been learnt from the child. We expect parents will read this material, too, and hope that they will find it as useful as others. Along the way, we will refer to our fictitious client, Lucy. We hope we can help her to tell us all about her worries and, especially, her needs.

From Albury to Champs Our first experience of collaboration concerning families with dependent children where parents have a mental illness was at a community health service in Albury, a regional city. Child and adult mental health teams were co-located. Families referred themselves, or were referred by child and family welfare agencies. When the parent needed intervention, our contact with the children was often terminated. The children themselves were never referred to a service in their own right, leaving us to worry about how they were managing. The next opportunity to work closely with children of parents with mental illness came through Marell Lynch’s role as consultant to a foster care program at Abercare (in the northern suburbs of Melbourne), which was also providing a peer support program for children of parents with mental illness, as part of the Champs project (see Cuff and Wragg, 1999). The agency expressed concern about the needs of this group of children and the need for provision of timely interventions in order to assist each child to better 120

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understand mental illness and to be supported. Support was often based around planned respite and emergency placement with a consistent family. The possible role of child and adolescent mental health services (CAMHS) in supporting such children was widely discussed. Firstly, many children in out-of-home care were placed for such a short time that CAMHS could not be available to provide continuing treatment, in many cases because the child was moving between households. The second key issue was how CAMHS could assist children who were distressed but not formally considered as meeting the intake criteria required by CAMHS. The third issue was how the child and parent would perceive involvement with another mental health service. Often, children had experienced their parent’s hospital admissions as distressing and not a topic that they could comfortably discuss unless supported by an understanding and sympathetic adult. Eventually, this collaboration between Abercare and the CAMHS service led to the systematic program that was documented by Cuff & Pietsch (1997). Cuff & Wragg (1999) subsequently described the Champs camps and the importance of these opportunities for the children involved. Robinson (1999) told of the value of these camps from the perspective of a participant who was the adult offspring of a parent with mental illness. Twin needs were well described by Robinson: the need to have space away from the worries of being a child of a parent with a mental illness, and the need to be able to share what such experiences are like without having to justify them, or without becoming a subject of diagnosis (as having a mental illness) . Stargate (Milburn, Salo & Lynch, in-press) represents a further contribution to this same, often overlooked, group of needy children. Many years of experience working in the provision of long- and short-term clinical work with children in foster care underpins what follows. The intervention principles are not complex, but require patience, persistence and compassion, and sometimes the effects are soon felt.

Needs Children have needs. Determining each child’s specific needs can be difficult. In general, children’s needs are no different to those of adults, except that a child needs more care and support than an adult, more security and less responsibility. For a child with a distressed or disturbed parent, there can be, of necessity, a reversal of ‘supply’ between child and adult as the child copes with the witnessing of the parent’s disturbance and attempts to supply the parent’s needs. When the parent is well, the child’s needs can be met in as full and as appropriate a manner as for any other child, but there will remain three The Royal Children’s Hospital Stargate Program

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sequelae of parental disturbance: One is a pool of unmet needs from the period of illness. Another is an unexpressed vigilance lest the disturbance return. Thirdly, ambivalence about the value of autonomy: ‘I need to be in charge’ and ‘I’m so sick of being in charge’. One of the key challenges of growing up is to become autonomous without isolation, and the child of a parent with a mental illness is likely to meet this challenge well before most other children, and well before she/he is ready. Oscillation between states of merger with the parent and isolated loneliness are signs of the arrival of this challenge. The child of a parent with a mental illness has unmet needs that are not, principally, issues of health, even though these may show as anxiety, depression or lowered impulse control. These needs have social, interpersonal and moral dimensions. The issues can only be addressed by giving voice to such concerns. A professional can aid the expression of voice, so long as such expression is not taken as evidence of the child having some sort of disease, and so long as the expression of such concerns is not considered to be leading to the removal of the child from his/her parent’s reach; that is, ‘coughing up’ or ‘spilling the beans’ can be feared to be revealing madness in the child or providing evidence that the parent is incompetent. Again, the relevant issues are moral and social ones, not psychological ones.

A program that evaluated children’s needs and worries: Stargate The aim of the Royal Children’s Hospital Pilot Early Intervention Program for Children in Out of Home Care, funded by the Department of Human Services Child Protection Service (Milburn, Salo & Lynch, in-press), was to ensure that the child entering out-of-home care was provided with the opportunity to explore the experience of entering out-of-home care and to identify the key aspects that would ensure her/his well-being. The program was the result of another collaboration between the key Western Metropolitan region out-ofhome care agencies: Abercare, Anglicare, Melton Fostercare, McKillop Family Services, Westcare and Bridges, and the Regional Child Protection Service of the Department of Human Services. Successful programs in this field always require partnership, from planning to implementation to evaluation. Many of the children (aged between birth to 17 years), who were entering care for the first time, had parents who were preoccupied with a substance use habit and/or mental illness. Parental permission was obtained for the children’s involvement. In many situations, during the assessment process, involvement with adult mental health services was organised with the parent’s agreement. Parents, carers, child protection officers, adult mental

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health workers, teachers and others as relevant, were consulted about the child’s needs across all domains, what would be required to enable the child to reach his/her full potential, and how the consultee could be involved in helping the child. Parents were seen when they themselves were in residential programs such as detoxification units, prison or specialist mental health services. What was most striking about the program was the high level of involvement of parents, and their wish to be open about their own difficulties and the impact of their behaviour on their child. Parents accepted referral to services with which, previously, they had been reluctant to engage. Parents no longer focused on their personal issues with the child. Many a parent spoke of having an insight into their own situation and understanding about why they were unable to parent at that point in time due to past personal experiences and current preoccupations. Focusing on the child’s needs by-passed the perceived blame that can surround a child’s entry into care. In turn, adversarial situations and major miscommunications among parents, carers and the several service providers were rarely evident.

Focusing on a child’s needs and worries brings adults into productive partnership Early intervention The precepts of early intervention with children at risk are to enable all parties involved in a child’s care to have an integrated understanding of the child’s physical, emotional, educational and medical needs, and to be able to respond in an appropriate manner. Planning to assist the child in processing her/his experiences with a concerned adult enables the child to voice fears, both real or imagined, so that situations can be made manageable and reduce the potential for any ongoing trauma. The key aim of early intervention is the promotion of ‘well-being’ (Prilleltensky, 1997). Talking with a child at Stargate The child attending our clinic (Milburn, Salo & Lynch, in-press) was informed about the reasons for our meeting. The key questions concerned the child’s experience: what it was like for them going into care, the reasons and what they thought had to change or needed planning to enable them to return home. Generally, all the children were keen to describe in detail what had occurred to lead them into care and what had been the actual process of going into care. These children described their feelings of leaving their parent(s) and their need to know their parent(s) were safe. The first interview was seen as providing a space for the child to process his/her experience through a range of media. A second interview was

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provided within a week, whether the child had returned home or not. At this second interview, discussion occurred on the changes in the child’s world, both positive and negative, and according to the child’s developmental age, support for self and their parents, family and community resources, peer recreational activities, and planning of what needed to take place, such as access visits with their parent(s). A playroom was used for the child interviews. The playroom had an ample supply of ordinary household equipment so that a day’s routine could be described, in detail. As well, art materials were at hand, and the children were encouraged to draw their family, house, tree, person and dreams. These projective media were inserted into the story as it was told by the child as a means of assisting the interviewer to have a more coherent understanding of a day in the life of this child. Lucy, at 10 years, seemed small and vulnerable. But she took to play with the doll’s house with wordless enthusiasm. Soon all the dolls were identified by family roles (mother, daddy, brother) and she agreed this was a bit like her family. ‘What happens when you wake up?’ led to a long description of a regular day, and later to what happened when the ‘nice lady’ had come to take her to into care. The nurses had Lucy’s ‘mother’ and one of them promised to look after her. Lucy burst into tears and wanted urgently to see her mother . . . It was suggested that Lucy might like to draw her family, and she settled well to the task, using a very deliberate drawing style with a grey lead pencil and avoiding use of the textas. Later, she drew her house, which happened to be like the doll’s house in the playroom. Alongside was a big sturdy tree with plenty of foliage. The skinny little girl had a lot of resources! Lucy finally was able to answer the question she had first avoided. She had come because her mother was ‘very sick’ and ‘I need to be all right’. She agreed to come back again and needed others to help her. She thought that if she was upset she could try to talk with her carer, or her friend, or maybe her teacher. She was pleased that at least school had not changed.

Means of facilitating expression of concerns Lucy is a fictional character based on much experience, so the interested adult should not expect to be able to draw things out so easily. The vignette is provided to give some sort of idea of what a Stargate child interview was like. Note that the child’s interest led the content, but timely, supportive enquiry gave the information that described the child’s needs. There is 124

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nothing particularly surprising about a child’s need for his/her family, but in such relatively unstructured play, certain specifics come through (‘mother’ and ‘daddy’, constricted affect, resourcefulness, intellectual abilities, worries about self, talk with friend and teacher). Not pressing for details allowed the building of trust and a clear statement about attendance and about needs. The projective media were part of the play. Doll’s-house play is often very clear, but it was not interpreted, the play was allowed (‘describe what happens when you get up’) to tell the facts of daily living and the facts of the child’s separation from the parent. Most children enjoy drawing, and drawings of family, home and of a tree convey much about the child’s inner world. In this case, the house drawing was a message about being at Stargate. At Stargate, meanings of drawings were always cross-checked later with other clinicians, as misinterpreting drawings in the presence of the child can be counter-productive. Ideas picked up in the first interview would be checked out in the more structured second meeting. Supervision was provided by a child analyst to ensure that nothing was overlooked or misinterpreted, and as a means for staff to consolidate learnings.

Some wisdom from more formal means of assessment The literature in the mental health evaluation of children can provide some structure that can be used when reflecting upon where a child is at. It needs to be reiterated that children of parents with mental illness do not, primarily, have mental health problems, despite the perceived risk. The sources are used here to help bring together observations, themes and impressions into something that might be communicated coherently to those in contact with the child and the parent. Simmons (1987) described a 10-topic assessment interview that has chronological form, but which does not have to be conducted step by step. The topics were: 1.

‘Reasons for coming or being brought for examination

2.

Recreation and interests

3.

Social, cultural and ethnic group, and the child’s harmony with it

4.

Peer relationships

5.

Plans for the future

6.

Family relationship

7.

Additional discussion of the presenting problem

8.

General health (psychophysiologic status)

9.

Fantasies and fears

10. Social awareness’ (p.59, 60). The Royal Children’s Hospital Stargate Program

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In other words, ‘how come you’re here, what do you like, what’s your background, who are your mates, what’s in the future, who’s in your family, what has all this to do with coming here, how’s your health, what are your worries and how do you deal with the worries, can others help?’ Sometimes the very first issue is too obvious to require asking, and with the child of a parent with a mental illness might be off-putting, but do not assume the particularity of the answer to this question without getting some information about it. Simmons (1987) would turn such interview narratives into mental status reports that covered twelve areas. These will not be listed as presented by Simmons, as they involve highly technical language, but can be summarised as: appearance, mood, general social orientation, coping style, physical coordination and integration, style of thinking and verbalising (inhibited, loud, free-flowing etc.), fantasies (wishes, play and dreams), socialisation (values, identification), self-concept, awareness of problems, intelligence estimate, and summary statement. In speaking with a worried parent, such information might be reported as: ‘Lucy is a basically friendly 10-year-old girl who seems to want to make herself hidden from view. She has not been really happy for some time, but she knows she can be happy. Although quiet at school, Lucy seems well enough suited to her teacher and her classmates, and has two close friends. She probably has periods of sadness and daydreaming. During these times she is probably worried about her family, but may not be easily helped to discuss such worries. She keeps things close to her chest. In turn, her grades probably suffer, but she is capable. She could be encouraged to take a few more risks.’ Another useful way of reflecting upon a child’s adjustment has been provided by Broder & Hood (1983). Their method is known as the ‘four Ps’: precipitating, perpetuating, protective and preventive factors. Actually, most people add another ‘p’: presenting. Precipitating factors are those that lead to the actual presentation, and for the child of a parent with a mental illness, this would amount to a description of latest onset of parental disturbance, with some emphasis upon the child’s point of view of the onset, which might be quite variant from the actual circumstances. Perpetuating factors would include the likelihood of recurrence of parental disturbance, and the child’s tendency to be vigilant. Protective factors would include the availability of support to the parent and the family, and the child’s resourcefulness and intelligence. Preventive factors would include parental treatment regimes and the child’s ability to express distress. Any evaluation of the adjustment of a child of a parent with a mental illness is about the child and not about 126

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the parent. Of course, the degree of parental illness will have an impact upon the child’s adjustment, but in assessing adjustment, one is trying to clarify needs and strengths within the child. Using Broder & Hood’s (1983) formulation, the following could be added to the above: ‘Lucy was quite upset when you started to repeat things and became confused. She seems to know the signs of your distress. She likes to keep an eye upon you, which you may not always like. In fact, this watching over you gets in the way of her enjoying life, sometimes. As she does not talk with her friends or other adults about her worries, these worries burst out at times that don’t make sense to others. In turn, this makes her feel like she is crazy, too. But you do have supports in place, in your doctor, the social club and your brother. Lucy could be encouraged to talk with her teacher or her netball coach. Others need to know that when she ‘explodes’ she needs time to calm down before much talking can occur. But the best thing you can do for her, beyond caring and listening to her worries, is to keep up with your treatment and let her know that you are doing so.’ The same information could be expressed to the teacher as: ‘Lucy has been having a hard time for several years; as you know, her parent has recurrent periods of mental illness. Lucy does not like others knowing about this, but she might sit in class all day worrying about it. She is able to talk to some people about it, and will if somebody gains her trust. Not much is really required, just listening and being clear that she can talk. The best time to cultivate such talking is when she is less worried, but maybe she will only be interested when things are getting bad. Trying to get her to talk after she has lashed out might be counter-productive, too.’

Skilful communication Any person who takes on the task of understanding a child’s needs carries the responsibility of communicating effectively about these needs. Being a skilful communicator involves many of the same skills involved in facilitating the child’s expression of needs and worries, especially listening. Feeding back involves thoughtful translation of the child’s needs into appropriate adult terms and, most importantly, attunement to gestural and spoken communication from the adults; that is, careful listening to oneself and others as one speaks, and then adjustment of what one is saying to communicate in the best possible manner. Advocacy for a child must respect the capacity of adults to listen, comprehend and then plan action. The Royal Children’s Hospital Stargate Program

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In most situations, it is best if the assessment of a child’s needs and worries is communicated to the parent with the child present. After all, they want to live with each other. By giving voice to the child’s needs and worries, the parent can then check these out directly and concretely. The child gains the security of knowing that the parent knows. Sometimes, adult mental health workers are fearful of how such feedback might be received by the vulnerable adult. This is a legitimate concern, and feedback needs to be closely monitored, as it is given to be sure that the message is conveyed. Not giving such feedback once the child has communicated with an advocate can be destructive for the child and the child’s willingness to trust adults in the future. As a rule, if the parent is considered well enough to care for their child, the parent needs to be able to listen to the child’s worries. So long as everybody is confident about the parent’s coping and caring capacity, such feedback is unlikely to be damaging for the parent and will be helpful for the child.

Acknowledged key adults for the child to contact and to stabilise the future Feedback from the Stargate program (Milburn, Salo & Lynch, in-press) was formulated in a way that ensured that parent, carer, workers and teacher all had a consistent and coordinated understanding of the child’s emotional needs and could be aware of the help needed in order to stabilise the child. Wherever the child moved, the knowledge of the daily routine, likes and dislikes, causes of distress and sources of comfort would move with the child in documented form, enabling continuity of care for the child.

Summary Helping a child of a parent with a mental illness to express her/his worries and needs takes time and skill and the cultivation of trust and security. Once such matters are understood, the responsible adult needs to communicate these expressed ideas to the parent and important others.

Acknowledgements Thanks to the Stargate team: Dr Nicole Milburn, Dr Bob Salo, Dr Carl Orkin and Ms Jen Faulkner, with special thanks to Ms Frances Thompson-Salo, for timely and astute supervision.

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References Absler, D. (1999) ‘Talking with children about their parents’ mental illness or mental health problems’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Broder, A. & Hood, E. (1983) ‘A guide to the assessment of child and family’, in P. Steinhauer & Q. Rae-Grant (eds) Psychological Problems of the Child in the Family, New York: Basic Books. Cowling, V. (ed.) (1999) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Cuff, R. & Pietsch, J. (1997) Peer Support for Children of Parents with Mental Illness: Program design and evaluation, Melbourne: Mental Health Research Institute. Cuff, R. & Wragg, S. (1999) ‘Champs camps: Camps for young people aged 9–13 who have a parent with a mental illness’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Kelly, M. (1999) ‘Approaching the last resort: A parent’s view’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Milburn, N., Salo, B. & Lynch, M. (in-press) Protected and Respected: The report of the Stargate early intervention program for children entering out of home care, Melbourne: Royal Children’s Hospital. Prilleltensky, I. (1997) ‘Values, assumptions, and practices: Assessing the moral implications of psychological discourse and action’, American Psychologist, 52, pp. 517–35. Robinson, V. (1999) ‘My involvement with Champs’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Simmons, J.E. (1987) Psychiatric Examination of Children (4th edn), Philadelphia: Lea & Febiger.

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11

JANET ALLEN

In Victoria, permanent placement of children is governed by the Adoption Act (1984) and the Children and Young Persons Act (1989). A small number of parents who have a mental illness place their children for adoption at infancy. These parents sign a consent for adoption voluntarily, with supporting psychiatric evidence that they understand the meaning of the consent and that they are signing the consent voluntarily. Children for whom adoption consents are signed are, in most situations, under 6 months of age and are placed immediately with adoptive parents who are prepared to raise children whose parents have a mental illness. The majority of children placed in care permanently are taken from their parents through Child Protective Services, under authority of the Children and Young Persons Act (1989). These children are placed permanently with a family, with guardianship transferred to that family through a Permanent Care Order granted by the Children’s Court of Victoria. Prior to the Children’s Court making the decision that the child is not able to return to his/her parents’ care, considerable effort would have been made by the Department of Human Services to establish whether the parents are able to develop skills to provide ‘good enough parenting’. Effort is also given to exploring the extended family in order to find a caregiver for the child. The child may be placed in permanent care if: • the Children’s Court has decided that the parent’s illness severely limits her/his capacity to provide good enough care for the child • community supports are considered insufficient to supplement the parent’s care • the extended family is unable to care for the child. Permanent placement of children of parents with mental illness

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CHAPTER

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When a child is unable to be cared for by his/her parents or extended family, it is the responsibility of Adoption and Permanent Care programs to provide a family for the child. In a recent audit of Permanent Care Orders granted in Victoria between 1 July 1997 and 30 June 2002, it was found that 233 out of a total of 780 children had a parent with a diagnosed mental illness. It is likely that the number of children in permanent care affected by parental mental illness is under-represented by this figure. Diagnoses are not consistently recorded on children’s files, the illness may be undiagnosed, and if the birth parent presents with drug addiction, underlying psychiatric disturbance may not be recognised. Children of the mentally ill represent at least 30 per cent of children placed in permanent care in Victoria. Successful permanent placement of children whose parents have a mental illness requires the balancing of complex decision-making processes and conflicting community attitudes towards placement and mental illness, understanding of the impact of illness on the parent and on the child, and understanding the capacity of foster care, permanent care and adoption systems to provide homes and support placements for the children. Balance is difficult to maintain and requires consideration of factors impacting on the child, the birth parent and the carers, as well as the influence of the structures of the child welfare system.

Success and stressors in the permanent care system The out-of-home-care system in Victoria is stressed and overburdened, to the point where placement of all children is becoming increasingly difficult. The decline in ability to recruit families to care for children relates to a number of factors. The older a child is at time of permanent placement and the more significant the impact of previous experience within her/his birth family and within the care system, the more difficult it is to find permanent placements for the child. The fear of many prospective carers that the child will develop a mental illness inhibits some prospective permanent carers from seeking to care for a child. Others fear they will be unable to accept and work with the parent’s problems during contact visits. The system already experiencing inadequate recruitment of families to care for children experiences greater difficulty in recruiting families for children in circumstances in which mental illness is part of the background of the child. Permanent care succeeds well in providing good quality care and in providing opportunity for a child to belong to a family. It provides: • stable, secure homes • families committed to the children • adequate physical care • tolerance and willingness to work with major behavioural disturbance 132

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• understanding of the need for connection to the birth family and acceptance of access • in most situations acceptance of the birth parents and family. No other system of provision of care for children who cannot be cared for within their birth family offers the overall strengths of permanent care. It is rewarding for those who undertake the care of the children, but it is also a major commitment to care, with little recognition of the difficulties or the need for long-term support. Placement agencies are experiencing increasing levels of behavioural disturbance of the children, and increasing pressure by Protective Services and the courts for more frequent contact with birth parents who wish to maintain a close relationship with their children. The expectations often fail to take into consideration the very real limitations of carers’ energy and commitments and, at times, children’s needs. There are strong inhibitors to maintaining placements, which limits the ability of the program to meet the needs of many children. Inhibitors include: • age of child when the decision is made for permanent care • degree of behaviour problem • lack of continuing placement support • high levels of access • fears regarding mental illness. In a climate in which carers are increasingly demanding that their views and their situations be taken into account when planning for the children, pressure is likely to increase on an already stressed out-of-home-care system.

Permanent care for children of parents with mental illness Ideally, children grow up in a stable, predictable environment in which they experience a friendly and safe world. They need and are entitled to stability, consistency, safety and security in their upbringing. In situations in which the parents are unable to provide care to a ‘good enough’ level, it is appropriate that the child be placed in a permanent setting. Children coming into care at birth are more likely to experience the world as a friendly place than the older child who has experienced unpredictable behaviour on the part of the parent and disruption in care. Older children placed in permanent care generally have had to learn to rely upon themselves for emotional support, and have often had to care for their parent in times of crisis. Their view of the world directs the child to rely on him/herself, to avoid the unknown and to expect uncertainty. A significant number of children with mentally ill parents come into care at a later age. By the time they are placed in permanent care, they have learned Permanent placement of children of parents with mental illness

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to protect themselves from hurt, to distrust adults and to seek control in order to make their environment predictable and therefore safer. They are often described as children with attachment disorders or suffering from posttraumatic stress, but these terms do little to illuminate how the child perceives him/herself or the world. For children, permanent care is a mystery, and after they have experienced several placements and/or return to their parents before being placed in permanent care, they may have learned not to trust any explanation regarding permanency. The experience of these children is that too many explanations made no sense, and too many promises were unfulfilled. Most children express that they want to feel they belong somewhere; they wish for a family, but their experience is of change. They may resist committing themselves to the new family, fearing further hurt, but simultaneously seek to belong despite their fears. In most situations, given time, the children achieve a sense of being part of a family and are supported by that family. They value that achievement and the new family’s commitment to them. Most children do not understand how they came to be in care or how decisions have been made that place them in permanent care. Their behaviour often reflects the confusion they feel and the difficulty they have in understanding how the Protective Services, Children’s Court and care systems work. The children are generally anxious and vigilant. They may not know what family life is like. They are loyal to and concerned for their birth parents, even if they are clear they do not want to live with them. They want contact with their birth family and want to know that their birth parents are alright. They are generally fearful of change and of committing themselves to the new family, and may display considerable anger. The children may not understand why they act the way they do, and may fight against what they most want, a place to belong, or they may be so fearful of being moved again that they over-conform. The most frequently expressed wish of the older child coming into permanent care is that they want to be where they can remain. They want to feel that they belong, and to have security and stability in their lives. There is an underlying fear that they will be moved, and when their behaviour causes stress within the family, a fear that they will be sent away. They need reassurance of belonging. They often find the Court Order giving the carers guardianship assumes great importance, even when they continue to question whether they can be ‘sent back’. Significantly for all children in care, there is a strong need to know that others share similar experiences. Being raised in a non-related family is in itself an isolating and alienating experience. A parent who is mentally ill adds an additional layer to the feelings of separateness and aloneness. Children and 134

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adolescents have a strong need to be like their peers and to know that they are not facing situations alone. Many find it difficult to bridge the gap to feeling supported and connected to others. How they handle the conflicting emotions related to their experience is individual, but there will be challenges for the persons who provide their care. Children can be loving and responsive, and can work creatively at becoming a part of the new family. At the same time, their behaviour may place stress on the carer’s commitment and motivation to provide care for the child. The children will almost certainly challenge their carers’ ideas regarding how to be a parent. The care and parenting style may be threatening to the child who both wants to belong and resists becoming part of the family.

Decision making Each year a small number of birth parents with mental illness make the voluntary decision to relinquish their infants for adoption. Although other factors may influence the decision, the birth parents do not believe they can provide the care and opportunities they wish for their child. Adoption consent is signed voluntarily shortly after birth. Infants relinquished for adoption are placed after the consent is finalised, generally with contact arrangement in effect from time of placement. Placement of an infant for adoption generally occurs quickly, and the child does not experience the emotional damage of inadequate care and repeated placement change. Although there are issues for the carers regarding contact, attitudes towards mental illness and possible future problems for their child, adoption in infancy is the least complex of placement options. Adoption of a child of a mentally ill person, however, is now rare. Most children become eligible for permanent care through Child Protection Services. They experience delays in planning for permanency while options for care with the birth parents and birth family are explored. The single greatest inhibiting factor to successful permanent placement of any child is delay in decision making, which delays permanent placement. Unwarranted delay in permanency planning exposes the child to continuing disruption in care, thereby denying the child stability, continuity, consistency and security. The longer the situation continues, the greater the impact on the child, the greater the possibility of emotional and behavioural disturbance for that child and the greater the task for the caring family in assisting that child to develop. The principles of permanency planning are generally accepted as good practice in placement of children. Permanency planning, however, has been used in a linear manner, requiring new planning when goals cannot be achieved, thus delaying the final decisions. The child welfare system is slowly moving towards a system of concurrent planning, which involves Permanent placement of children of parents with mental illness

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planning with alternatives that allow immediate, goal-directed movement when birth parents are unable to stabilise or to achieve the goals set. This could do much to alleviate delays in decision making, and is a hopeful change that should assist in reducing system-induced problems for these children. Decisions to place a child in permanent care involve accepting that the birth parent is unable to provide ‘good enough’ parenting for the child. The policy of the Department of Human Services is to explore home release prior to considering long-term placement of a child. This often leaves the child in limbo for extended periods due to reluctance on the part of the birth parent to accept the decision that he/she cannot care for the child, but also because of reluctance on the part of decision makers in the protective and mental health fields and the Children’s Court to view the situation from the perspective of the child’s needs and to act against the wishes of the parent. In too many situations this continues for an overly long period, sometimes years, thus exposing the child to further disruption and entrenchment of emotional problems related not only to the parents presenting problems but also to the child’s experience in care. As a consequence, it becomes increasingly difficult to find placements for children, and the system fails to provide the security, consistency and stability necessary for their development. Even in situations in which decisions for children are made expeditiously by the Department of Human Services, placement can be delayed. Birth parents have the right to appeal the decision through Departmental review processes and through the Children’s Court. The Children’s Court tends to view the child’s interests as consistent with the interests of the birth parent, and to focus on the birth parent’s wishes and proof of harm, rather than on the needs and long-term prognosis for the child. The Children’s Court may not support the decision for permanent care or may support it intermittently. The effect of extended contested court hearings and inconsistent decision making is to create unrealistic hope that the child will be returned to the birth parent, which in turn encourages non-acceptance of placement by both the child and the birth parent. If the child is living with the permanent care family, high levels of anxiety for the child and the caring family result. In such difficult situations, perhaps the best outcome that could be hoped for (for the child) is for the birth parent to accept that her/his child will be raised in out-ofhome care.

Permanent carers of children of parents with mental illness Persons who provide care for children of parents with mental illness usually like children and are, in my experience, characterised by sensitivity and

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compassion. They have understanding and willingness to go the extra distance to enhance the situation for their child. They have realistic views of the situation and a down-to-earth attitude. They tend not to be judgemental, and take responsibility for their own feelings and behaviours. They are confident within themselves and are not vulnerable to over-riding doubt regarding themselves or their children. They support their children’s need for connection with their first family. Carers generally are willing to work with support agencies to make contact visits successful, and to address personal issues for themselves and their children. They do not equate behaviours in their children that are similar to the birth parent’s behaviours as evidence of developing mental illness, and are willing to talk about the birth parent’s situation and listen to their child’s concerns. They are creative and open to thinking laterally about the situation.

Birth parents Most birth parents want the best for their children. They maintain their concern for their children even if they are unable to express that concern constructively through consistent behaviour. They would like to maintain relationships with their children, but frequently need structure and support in order to create an environment that will successfully achieve and maintain a positive relationship with their children. Mary relinquished her child for adoption at birth, understanding that her problems were so severe that she was unable to care for herself adequately and could therefore not meet the needs of her child. Her general coping had deteriorated over time, but her interest and concern for her child had not diminished. She chose to receive pictures and information only for the time being, stating ‘I do not want my child to see me like this until she is able to understand’. As her child reached her teens, she developed an interest in getting to know that part of herself, her birth family. The adoptive parents encouraged that interest. Mary is immobilised by her daughter’s request. With encouragement she now will write to her daughter, but could not take the initiative herself. When and how more successful contact can be made remains in the future, but will not happen without outside assistance. Birth parents frequently need assistance in accepting that their child will be raised in care, and in developing skills that encourage a continuing relationship with their children. Birth parents frequently have major

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difficulty in placing the child’s needs before their own, and without support and direction unintentionally defeat the relationship they wish to build with their child.

Recruitment of carers Currently, recruitment of parents for children is a major challenge for agencies providing permanent care. There is a mismatch between the children desired by families who are coming forward to care for children, and the children in need of care. Most children in need of care are school-aged, whereas most families seeking children wish to begin with a pre-school child. Recruitment is hampered further by misinformation regarding mental illness. For many prospective parents, the fear of having to deal with the parent’s problems, and possible inherited problems with the child, is overwhelming. Although appropriate education regarding mental illness can do much to alleviate fears, a prospective carer needs to be willing to take risks and to accept the person. Carers need to be able to acknowledge their own reaction to behaviour they perceive as unusual, and to accept that the child could develop the illness but that it is not inevitable or highly likely that the child will become mentally ill. Carers need to be able to contain their feelings and allow the child to talk of his/her feelings,and give space for the child’s concerns to exist. They need to be good listeners and have the ability to understand the child’s concerns from the child’s perspective, to help the child make sense of her/his background and remain connected to his/her birth family. The carers task is to assist the child in understanding, but not take on or act out the birth parent’s problems, and to provide a stable environment which enables the child to learn skills to deal with stress. •

Tom and Sara adopted a child now aged 14, following protracted court intervention which involved contested dispensation of adoption consent applications. They have provided information and photos of the child to the birth parents since placement, and arranged twice-yearly meetings. Tom and Sara have a strong commitment to the birth parents’ acceptance of them, and understand their need for contact with their child. As the child has reached teens he has become reluctant to meet with his birth parents. He states that he does not want to be seen with ‘people who are so weird’, and does not yet understand the impact on their lives of the illness his birth parents have. >>

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Tom and Sara accept their child’s feelings and underlying fear that he may develop the illness. They accept his need to be like his peers. They hope to bring him to greater understanding and acceptance of his birth parents as he matures, and to assist him in knowing he can become his own person. They are equally determined to maintain contact with the birth parents, recognising the importance of their son to them. While seeking to assist their son to gain a more mature understanding of his birth parents’ illness and their concern for him, Tom and Sara continue to meet with the birth parents and provide information regularly. They and their care worker have interpreted the child’s current position to the birth parents who reluctantly have accepted this ‘hiccup’, as they define it, and look towards the future in a more realistic manner. This has enabled the birth parents to avoid further court contest, which would only alienate their son.

Placements in which the birth parent does not accept the need for the child to be in care present additional recruitment issues that can deter potential carers from applying to care for the children. Carers who take on the care of children whose parents do not accept the placement experience the anxiety of contested court hearings and appeals until guardianship is granted to them. The anxiety created for the child and carer can inhibit commitment to the placement by both the child and the carers. Recruitment of carers who are able to make a strong commitment to the birth parent and to the child, and who can bring flexibility and creativity to the placement, and to maintaining a relationship with the birth parent through any problems that may ensue, is a continuing challenge for agencies providing permanent care for the children.

Contact/access visits Current policy and practice encourages continuing contact between birth family, the child and the caring parents. It is supported by the Children and Young Persons Act (1989) and by the Adoption Act (1984), and is a part of the Adoption Order and the Permanent Care Order. Contact has the capacity to alleviate concerns of child and carer regarding the birth parent, and to address issues of being raised in care, but it also confronts children and carers with additional and frequently stressful complexities. Most children need and want contact with their birth families, and most birth parents want the best for their children and are concerned for their welfare. Their concern does not diminish over time, even in situations in which they withdraw, are unable to focus on the child’s needs or fail to maintain contact. Permanent placement of children of parents with mental illness

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The process of establishing and maintaining contact creates complexities for the child, the birth parent and birth family and the caring parents, and is generally a balance between the needs and wishes of the parties, and ability of the carers and birth parents to make flexible arrangements. Children, whether in physical contact with their birth parents or not, have issues to resolve regarding their birth family. Those issues include building identity from two families, satisfying the need to know about their past, gaining an understanding of why they are in care, and accepting themselves, their birth parents and their permanent care parents. When it is possible to sustain regular contact that focuses positively on the child, access visits facilitate the resolution of issues of being in care for the child. However, the less able a birth parent is to place the child’s needs above his/her own and to look at situations from other perspectives, the more potential there is for problems with contact. A substantial number of mentally ill birth parents are unable to maintain regular contact. For the children, intermittent contact arranged solely at the birth parents’ request is highly unsatisfactory. It creates expectations that are repeatedly disappointed, and creates considerable pain and confusion for the child. Some children find frequent contact distressing, particularly when the birth parent does not accept placement or is emotionally threatening to the child. More time may be needed between visits for the children to regain their sense of security. The child may feel unable to communicate openly with either the birth parents or the carers. The child may pick up negative attitudes of the carers towards the birth family or the birth family towards the carer. She/he may have loyalty conflicts regarding belonging to two families. The child may experience rejection on contact, particularly in situations in which the birth parent is unable to relate to him/her appropriately and the birth parent’s or child’s expectations are unrealistic. There may be tension between the two families and inability of carers and/or birth parents to take responsibility for their behaviour. Sensitivity to the mood and feeling of the child and birth parents facilitates positive contact. Children as young as 3 to 6 months can experience strong feelings of anxiety when meeting their birth parents. Jenny was placed at birth, but has always reacted strongly when seeing her birth mother. In part her reaction is a response to the anger and tension expressed by and unable to be controlled by her birth mother. But it also related to a special interaction between the infant and the mother, and to the child’s fears of separation from her carers which had been reinforced by placement shifts.

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The pre-schooler may react strongly before and following contact, generally with tense, anxious behaviour or generalised fear. The more anxious the child is, the more likely the anxiety will be expressed through the child’s behaviour after the visit, even when the child appears to cope well during access. The carers need to be able to read the child’s behaviour, to devise ways to assist the child in understanding the situation and to develop realistic expectations of the meeting in order to reduce the child’s anxiety. Anxiety may become more blatant as the child matures and comes to understand that being in care is not ‘normal’, and that his/her birth parent’s behaviour and expectations do not conform to culturally perceived norms. The child may have to deal with difficult or self-centred behaviour on the part of the birth parent. A birth parent who cannot view situations from the child’s point of view may make unrealistic demands or be overly sensitive if the child does not react as she/he wishes. This may be experienced by the child as rejection. Conversely, the child may demand more of the birth parent, and the birth parent may feel rejected. Both the child and the birth parent may express considerable ambivalence regarding contact, which is often expressed through their behaviour rather than through problem solving or discussion. Andrew, aged 8 years, wants contact with his birth mother and asks for it if there is too long a gap between visits. His birth mother has frequent hospitalisations, chain smokes and her appearance has deteriorated over time. Andrew asked her not to smoke and said quite protectively that it was not good for her. Following that incident, his birth mother has refused further visits. Her perception is that ‘he does not like me’. Andrew has requested visits, feels rejected by his birth mother and believes he caused the rejection. Like many children, he feels responsible for what has happened to those around him, and wants to make it right. He is in considerable turmoil and as yet is unable to understand that his birth mother’s expectations are unrealistic and that her skills to relate to people are limited. Access can be a great embarrassment and threat to the older child or teenager who realises the differences between her/his birth mother and other parents. Developmentally, these children want to be like their peers, and any event that forces acknowledgement of difference is keenly felt. Emotionally, they frequently harbour fears that they might become like their birth parent. The complicated emotions and dynamics of contact may encourage the teen to withdraw until he/she is able to handle the inherent tensions. On the other hand, some children need more contact with their birth family in order to Permanent placement of children of parents with mental illness

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provide opportunity to understand their past, their birth family and, ultimately, themselves. Children of all ages may fantasise about their birth parents and family. If the birth parent makes unrealistic promises, gives inaccurate information or overtly states ambivalence regarding the child and/or the placement, it may be more difficult for the child to sort out fantasies. Jim is 16 and the youngest of six children who could not be raised by their birth mother. Jim wants to accept his birth mother’s perception that she protected him and that he was forcibly removed from her care. But he also remembers that he suffered chronic and severe neglect, ‘parented’ his birth mother at the age of 4 and was removed at his mother’s request because he did not care for her as she wanted. He remembers her anger and his fear of her anger. He is loyal to his birth mother and wants to believe that she can care for him. When the pain is too great, Jim shuts out the angry person he frequently has to deal with. He wants to believe he can live with her as she promises, but recognises her difficulty in caring for herself and the demands she makes on others for her care. He runs away whenever she tries to set up a visit, but is insistent on maintaining a fantasy that gives her the status of a good parent. He is creating challenges for his permanent care parents, who are seeking to assist him in finding more satisfactory ways to understand his situation. In circumstances in which birth parents are unable to maintain positive contact, children experience deep pain at being let down by a person who should be providing care, security and stability for them. They seek many ways to alleviate the pain, frequently with unsatisfactory results, until they reach sufficient maturity to look at the relationship and develop ways to understand what has happened to them. It is unrealistic to anticipate that children, permanent care parents and birth parents will be able to balance easily the complexities of contact. Carers generally wish to work with support services in order to make contact successful and to address personal issues for themselves and for their children. Unfortunately, long-term support services in Victoria are not resourced and are frequently not available to families. Termination of placement support and assistance with access has been identified as a major gap in service delivery; a gap that may have long-term adjustment implications for the child.

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Support beyond placement Goodwill, compassion and understanding do not necessarily resolve problems. Assisting children in finding ways to understand and live with what has happened to them requires a reworking of the balance of needs between parties to the placement as the child matures. The issues relating to the birth parent’s illness that need to be addressed by the carer parents and the children add complexity to the already significant issues for all children raised in care. Currently, there is an expectation that placement support will be provided until the placement is legalised by a court with an order that transfers guardianship to the carers. In Victoria there are no resources designated for provision of continuing placement support. Permanent care and adoption agencies must be creative within their services in order to provide the support needed for permanent placements. The result is that in too many situations supervision and support of placements are terminated prematurely or are limited to supervising the contact visits. This then leaves the caring family on its own to deal with placement problems as they arise, which may include responding to the needs of the birth parent. This situation creates potential for destabilising the placement. Because of the complexity of the issues, and the need to understand mental illness and its implications for the person experiencing the illness, and for those with whom the person is in contact, there is a need for the availability of continuing proactive work to resolve placement issues. Workers and carers should work cooperatively to anticipate and prevent problems from developing, rather than having to deal with crises and deteriorating situations. Successful placement support requires creativity on the part of the workers and the carers in order to address the children’s concerns and the birth parents’ situation. It frequently requires an inter-agency approach that combines the resources and expertise of multiple services which accept that the mentally ill person may not be able to initiate action independently and responsibly. In circumstances in which contact is occurring, creativity, structure and direction is needed in order to enhance the likelihood that contact can be positive for the child, and to increase the child’s and birth parent’s connection with each other. Loretta wanted to maintain contact with her young son but agreed with the worker that she should not see him when experiencing a psychotic episode. ‘You are right, but I will be angry with you if you say I cannot >>

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see him.’ She had difficulty relating to her young child, expecting him to behave at age 3 and 4 years much more like a young adult, but was appreciative of the carers for what they provided for her son. All visits have been carefully planned with the placement support worker and mental health case manager. The permanent care mother has provided appropriate games and toys and has shown Loretta how to play with a young child. Her case manager has assisted Loretta in planning and producing a snack as her contribution to the visit. Loretta has been involved in planning the venue and taking responsibility for getting to the meeting. She is encouraged to focus on her son while at the meeting. As her son has grown, activities have changed but the underlying inability of the birth mother to relate to him without assistance has remained. The permanent care family has come to accept that they will need to orchestrate contact indefinitely with the birth mother’s support services and their support worker. They will need to assist their child to understand that his birth mother is unable to arrange and manage the contact without assistance, and that he may need to expect the unexpected from his birth mother all his life. He comments positively on seeing her, on looking like a birth uncle, and on wanting to see the family pictures. He is able to engage his birth mother in activities which both enjoy. Birth parents may require understanding and assistance with their issues in order to maintain their relationship with their children. This support should be provided by agency workers, not by carers, and in a time and place quite separate from contact visits. The birth parent frequently needs assistance with access visits, to create the opportunity for positive interaction. In situations in which the birth parent is unwilling or unable to understand and place the child’s needs before his/her own, or is unable to control inappropriate interaction, she/he may need indefinite supervision of contact to ensure boundaries and limits appropriate to contact are maintained. •

Kathy lived in a violent relationship and she and her partner terrorised their child. Kathy depended on her partner, denied there were problems and projected them onto others. She sought to control situations by becoming aggressive if she felt her wishes were being thwarted. At contact visits she would assure her son that he was returning to her care, terrorise him further with talk of the behaviour >>

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of her partner, and at one point attempted to abscond with him. She refused to accept limitations at contact visits, and fought successfully through the court for weekly access, although she did not attend meetings regularly. When her son was transferred to permanent care, Kathy was advised that the task was to make the placement work, and that further incidents of hostility would result in a period of no meetings with her child. Activities and conduct at the meetings were prescribed. •

Kathy responded angrily but was advised that contact visits were for the child’s benefit and that it was her responsibility to make contact work. Kathy accepted the explicit direction, structure and limits. It is unlikely that contact will ever be able to be unsupervised, but over a 2-year period it has become positive for the child and Kathy is now cooperating with arrangements and seems to be enjoying the visits. Her son continues to display anxiety about seeing his mother, but requests contact every few months. He no longer reacts with fearful behaviour after the visits, although he frequently needs reassurance that Kathy will not abscond with him. He is beginning to talk of his fears and discuss episodes of both pleasure and abuse while in his birth mother’s care. As the child’s anxiety decreases and his security increases, he is able to more clearly distinguish the good times with his mother from the times during which he feels afraid.

Many of the challenges presented in placing a child whose parent has a serious mental illness are problems carers should not be asked to resolve on their own. Successful placement support requires assessment of the needs of each party, a focus on the long-term needs of the child, and ability to balance needs and make decisions creatively in order to direct change. Continuing placement support needs to be available to children, birth parents and carers.

Conclusion Children of parents with mental illness are placed in permanent care when the Children’s Court determines that their parents are unable to provide ‘good enough care’. These parents may bring aspects of their own problems to the placement. Their illness seriously affects the parents’ capacity to relate appropriately in some situations, while their love and concern for their children is undiminished. The children at some point must address all the issues of being raised in care, plus the issues of having a mentally ill parent and its impact on them. They frequently react to their situation with fear, hurt and anxiety, which is acted Permanent placement of children of parents with mental illness

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out in behavioural disturbance. They want to belong to their new family and maintain their important relationship with their birth family, but may not know how to do this. They are confused by their experiences and have little understanding of the complex issues of their situation. They are frequently angry children who cannot trust those around them. When placed at an older age they may not have learned many skills needed for successful development, and may be struggling to survive, having depended upon themselves, not on their parents, to protect them. Their permanent care parents need to be able to understand the impact of the birth parent’s illness on the child from the child’s perspective, and to assist that child in making sense of what has happened to her/him in ways that encourage positive relationships and growth. A number of factors impinge on the ability to locate and support permanent placements for the children. Out-of-home care is experiencing serious problems due to the increasing demand for placement and the increasing emotional damage to children needing permanent care. Age, each additional factor of disturbance and each additional background problem increase the difficulty of finding an appropriate placement for a child. There is considerable fear and misinformation regarding mental illness in the community. Parental mental illness adds to the complexity of placement, and the difficulty of finding carers able to take on the care of a child whose parent has a mental illness. Placements need accessible, long-term support services, and where those services are lacking, potential carers may withdraw from the program. The crisis in out-of-home care is compounded by the problems surrounding decision making regarding permanency planning within Protective Services, the Children’s Court of Victoria and mental health services. Long-term support services are inadequate for the needs of the children and their caring and birth families. The issues for all parties are complex and inter-related. Successful placement requires that the carers have the ability to understand and accept mental illness, and that they are not personally vulnerable to fears arising from the birth parent’s situation. Despite the challenges, most placements of children whose parents are mentally ill are successful for the children and rewarding for the carers. The goodwill and sensitivity of the families who provide care for the children are notable, as is their ability to provide the children with stability, consistency and choices in their lives. Permanent care parents tell workers that even with the down times they receive as much as they give. A common acknowledgement of young adult children of mentally ill parents who have been raised in permanent care is appreciation of the chance to ‘have a family’, and for the life it has given them. 146

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References Absler, D. (1999) ‘Talking with children about their parents’ mental illness or health problems’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Allen, J.M. (2000) The Invisible Child: Balancing of needs in contact. Proceedings of the 7th Australian Adoption Conference ‘Putting the Pieces Together’, Hobart: University Print. Delaney, R.T. & Kunstal, F.R. (1993) Troubled Transplants: Unconventional strategies for helping disturbed foster and adopted children, Maine: Edward Musket Institute. Keck, G.C. & Kupecky, R.M. (1995) Adopting the Hurt Child: Hope for Families with Special Needs Kids. A Guide for Parents and Professionals, Colorado Springs: Pinon. Macaskill, C. (2002) Safe Contact: Children in permanent placement and contact with their birth relatives, Lyme: Russell House Publishing. Maluccio, A.N., Fein, E. & Olmsted, K.A. (1986) Permanency Planning for Children: Concepts and methods, London: Tavistock Publications. O’Neill, C. (1999) ‘Support and permanent placement for children’, PhD thesis, Parkville: School of Social Work, The University of Melbourne. Sheehan, R. (2003) ‘The marginalisation of children by the legal process’, Australian Social Work, 56, pp. 28–39.

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12

SONIA RUSSELL

Most children having a parent with a mental illness are well cared for in the context of their biological families. The fact that a parent has been diagnosed as suffering from a mental illness cannot in itself constitute grounds for the intervention of child protection services. However, it may be that the effects of the illness are such that a parent seems likely on a short-term, or even a long-term basis, to be unable to attend satisfactorily to the demands of caring for dependent children. This occurs in cases in which there is significant impairment in one or more areas of functioning that are considered to be essential for carrying out the necessary tasks of parenting. For example, the parent’s capacity to pay attention to children’s immediate needs may be affected by difficulties with concentration, memory, motivation and preoccupation with other issues. The parent may also have difficulty in communicating with outside agencies such as kindergartens and schools. From time to time, the disturbed behaviour of a parent as a result of delusional thinking, disturbances of mood or difficulties in relating with others may be seen to have quite deleterious consequences for children. Supports may be available from partners, relatives, friends and professional agencies. Intermittent use of respite care for children may also be of assistance. However, there are clearly some cases in which adequate supports are not available, especially for single parents suffering from mental illness. There is evidence from studies conducted within Australia and overseas that significantly more children having parents who suffer from chronic problems of mental illness are referred for out-of-home care than would be expected on

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the basis of the incidence of mental illness in the general population (Tomison, 1996). There is also some evidence from a large study conducted in Boston, United States (Taylor et al., 1991) that families in which a parent suffers from an emotional disorder may be significantly more likely to have children removed from their care permanently than is the case for other families in which notification issues have been similar. With respect to specific forms of mental illness, Tomison (1996) cites research findings indicating that depression and substance abuse have been found to be the most common diagnostic categories linked with reports of physical abuse of children, with parental affective disorders (diagnosed and undiagnosed) being also significantly represented as antecedents of child protection involvement. The writer has had personal contact with a number of families over the past four decades whose children have been removed from the care of their single mothers who have suffered from schizophrenia. The expectation has been that long-term, alternative care arrangements would be required. In some cases, there have been short-term casework interventions carried out for the purpose of re-assessing the parent’s capacity to care for her child or children. However, in a significant proportion of these cases, it has become apparent that without unrealistic levels of support, home return of the children has proved to be unsustainable. Borderline personality disorder (BPD) is also a frequently used diagnostic descriptor for parents of children associated with the child protection system, although this may not be accompanied by a formal diagnostic statement from a medical practitioner. Adjustment difficulties associated with this ‘diagnosis’ often include substance abuse, suicidal behaviour, violence in relationships, poverty and homelessness, symptoms of depression and, in some cases, incarceration. Parents diagnosed with BPD may also present as demanding and, at times, extremely hostile towards professional workers and carers associated with the child protection system. Cooperative planning for the home return of children under these circumstances can become confused, as issues relating the parent’s actual parenting capacity become difficult to disentangle from his/her apparent emotional instability when communicating with child protection workers. In this chapter, attention is given to the dilemmas that face the child welfare system and the court system in ensuring that when children of mentally ill parents are placed away from their families, the short-term and long-term needs of the children and their families can best be met. Particular attention is given to the current situation in which the practice principles of ‘permanency’ planning are central to the philosophy of case-planning agencies.

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Historical context of care for children out of home During the 1970s and 1980s in Australia, long-term, out-of-home care of children frequently involved some form of group care staffed by professional carers. Some of the settings for such care involved clusters of residential units in institutional, or ‘campus’ settings. In other cases, children resided in professionally staffed ‘family group homes’ scattered within the general community. The agencies responsible for the running of these homes were frequently linked with an established church. It was the writer’s experience during the 1970s and 1980s, working as a psychologist within the Victorian residential care system, that there were a number of families in which the mental illness of the parents was certainly not associated with diminished love and concern for their children. It was generally accepted that these parents were unable to function adequately in a supervisory role with their children on a full-time basis. However, they would visit their children very regularly, and in many cases some supervised access at home occurred. An advantage of the residential care system was that access visits could be virtually unlimited in number, and that appropriate supervision was assured. From the early 1970s onwards, there was considerable thinking and writing in progress among practitioners and academics in the field of child welfare, associated with a substantial reduction in the residential care services described above, and a swing towards foster care as the dominant form of outof-home care. Concurrently, the principles of ‘permanency planning’ were being developed and strongly supported by the field in general (Maluccio, Fein & Olmstead, 1986; Picton & Boss, 1981). This coincided with the development of special needs adoption programs for older-age children, and children with developmental difficulties and behavioural problems. A little later, the concept of ‘family decision making’ was explored in theory and practice. This work was initially based on programs developed in New Zealand for the purposes of supporting and encouraging the extended families of children to assume collective responsibility for the care of children where there were protective concerns for children in the care of their parents (Swain & Ban, 1997). During the past decade, it has also been the writer’s experience that parents suffering from some very severe mental conditions have consistently expressed love and concern for their children who have been placed in foster care. In some cases, successful reunifications of children with their parents have occurred, with the assistance of community based supports, which would not have been available during the 1970s and 1980s.

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However, there have been other cases where, due to the severity of parental mental illness or a combination of mental illness with other factors such as family violence and substance abuse, a case plan for long-term, out-of-home care has been formulated. In some of these cases, placement with members of the extended biological family has been possible, with varying degrees of support from child protection services and foster care agencies. In other cases, where there have been grandparents or other relatives who have expressed some commitment towards caring for the children, tension between the mentally ill parent and the extended family has eventually prevented or undermined the placement. This has often occurred in circumstances in which the behaviour of the mother towards her own parents has undoubtedly been affected by the mental illness itself, resulting in emotional outbursts, erratic demands, extreme hostility and attempts to influence the child against his/her carers. In the past decade, children who have not been placed with their extended family have almost always been placed in foster care, at least initially. In some cases, the children’s behaviour has proved difficult for carers to manage, possibly as a result of emotional disturbance and developmental difficulties arising from adverse early environmental influences. This has contributed to the breakdown of placements, both with relatives, and with unrelated carers. In extreme circumstances, some children have eventually been cared for in one of the few remaining staffed residential units where it is determined that, at least in the short term, the behaviour of the child cannot be managed in a family based setting. There certainly have been many placements in which strong bonds of attachment have formed between children and their unrelated foster carers, often from an early age. In some of these situations, difficulties have arisen in maintaining satisfactory arrangements for access with birth parents, which are not disruptive to the behaviour of the child, and/or to the routines and independence of the caring family. However, many placements have proceeded very satisfactorily for long periods of time, with arrangements for access with birth family members also proceeding well, by mutual agreement.

What are the principles of permanency planning? There are three main elements associated with the concept of permanency planning for children. Put briefly, these are: • Ensuring that children have the opportunity to be cared for safely, on a continuous basis throughout infancy and early childhood, to promote the formation of secure attachment with adult caregivers as a foundation for healthy personality development and optimal learning (Wise, 2000)

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• The avoidance of ‘welfare drift’—involving multiple placements (many of which may be sudden and unplanned), uncertainty for the future and children having nowhere to belong • Recognition is generally given to the importance to children of maintaining some links with their biological families if this is possible. Studies have documented that in the past there has been a range of care arrangements for children which have not offered these conditions, with the result that children have emerged from the system with learning difficulties and poor standards of educational achievement, personality and conduct problems, feelings of dislocation and difficulties in establishing close relationships in adulthood (Cashmore, 2000; Newton, Alan & Landsverk, 2000; Penzerro & Lein, 1995; Wise, 2000). To a certain extent, it seems that the architects of ‘permanency planning principles’ had in mind situations in which, as a concomitant of ‘welfare drift’, parents had become detached from their children and seemed unwilling to care for them or to maintain meaningful contact. In spite of sporadic attempts at reunification, the presenting picture was often one in which a parent’s lifestyle had developed in ways such that the care of their children was no longer highly prioritised (Borland, O’Hara & Triseliotis, 1991). In outlining the principles of permanency planning, Maluccio, Fein & Olmstead (1986, p.4) state that ‘the foremost question to be asked and answered in each case is: “Will the child have a family when he or she grows up?”’ Currently, application of the principles of permanency planning imply: • Timely decision making about the likelihood of parents ever being able to safely and effectively resume care of their children • Alternative carers for children need to be recruited who can maintain care on a continuous basis and who can also offer sufficient flexibility that if parents seem to be able to be in a position to resume care of their children, they can support this plan as well. The term ‘concurrent planning’ is commonly used to describe this principle in recent publications (Katz, 1999) • There seems to be a general acceptance, especially in the Victorian program, that in order for good bonds of attachment to develop between the child and her/his new substitute parents, access visits with biological parents should generally be kept to a reasonable limit. In some cases, access visits may be scheduled as infrequently as once every 3 months • At the same time, some form of continuing contact between children and their biological family is generally seen as beneficial in the long run. It seems that in relation to all of these practice principles, there are some special difficulties relating to planning for a number of families in which

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parental mental illness is present. In practice, even if child protection staff have been strongly committed to achieving these goals, there have been protracted court cases involving appeals and disputes between parents and agencies responsible for case planning. These proceedings have had the effect of keeping children and caring families in a prolonged state of uncertainty about the future care arrangements for children. It also seems that there are some valid arguments that the best interests of the child, in the long term, may not always be served by studious application of the philosophy of permanency planning in its purest form. In the remainder of this chapter, consideration is given to a range of contentious issues affecting decision making for children of mentally ill parents. These issues are discussed as they arise in the legal context, in the context of the psychological theories, research and ‘practice wisdom’ relating to children’s development and adjustment. Finally, consideration is given to some systemic difficulties and limitations that may mean that striving for apparently ‘ideal’ solutions for children requiring out-of-home care will sometimes result in harmful disappointment and disillusionment for children, carers and families. The need for flexible exploration of realistic, individually appropriate options is discussed.

Issues in planning for the long-term care of children of parents with mental illness The legal context A summary of apparent barriers to support for Permanent Care Orders, and reasons for delays in legal decision making It appears that the barristers representing parents and the magistrates of the Children’s Court have been mindful of: • the strong emotions expressed by some parents in relation to their love for their children • the restricted opportunities for contact with their children that may apply under Permanent Care Orders • the possibility that treatment programs may make a difference to the parenting capacity of the parents over time • the tension that frequently is manifest between parents and child protection staff. This is often quite extreme, and relates at least in part to the difficulties parents may have with emotional and behavioural control, intrinsic to the nature of the mental disorder, as well as to the understandable reaction to the threat of losing their children • the belief that if more intensive support services were available for parents they may be able to care for their children. 154

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Some of these issues are discussed in greater detail below. Issues of diagnosis and prognosis It has been consistently reported that medical professionals are, on the whole, reluctant to make diagnoses of patients which categorically predict that the nature of their psychiatric condition is such that they are unlikely to be able to parent effectively in the future. This may at least partly relate to the fact that, as children mature, they are increasingly capable of self-care to a certain extent, and monitoring of children’s emotional and physical presentation becomes increasingly possible by outside agencies. Also, parental compliance with treatment programs and medication regimes may be expected to alter the course of a mental illness. Sheehan (1999, 2000) reported that magistrates in Victoria have on the whole preferred to take an optimistic stance in relation to the ability of parents to change for the better, if they appear motivated to attend counselling and treatment programs. There has been general concern expressed in the child protection field that because of the above-mentioned reluctance to take steps for termination of parental rights in some cases of parental mental illness, some children are subjected to repeated harmful experiences of re-unification. It has been argued that more research is urgently needed in order to clarify indicators for such decisions (Wise, 2000). Issues of contact and access—legal considerations In Victoria, there is a marked difference between the operation of the Children’s Court and the Family Court of Australia in determining contact arrangements for children not living with their parents. There are clear guidelines set out in 68F of the Family Law Act (1975) detailing factors that must be considered in determining the best interests of the child in relation to contact with parents with whom she/he is not residing. These guidelines include consideration of the wishes of the child; the nature of the relationship of the child with each parent; the effects of separation from the parent; practicalities associated with contact and the child’s current care situation; capacities of parents to offer care; the child’s maturity, sex and background, including the child’s need to maintain a connection with the lifestyle, culture and traditions (of Aboriginal peoples or Torres Strait Islanders); and the need to protect the child from physical or psychological harm caused by exposure to abuse, ill treatment or violence, either directly or as a witness. Under the terms of the Children and Young Persons Act (1989), it is specified that a Permanent Care Order ‘must include conditions that the court considers to be in the best interests of the child concerning access by the child’s parent’ (Section 112(3)(d)). However, there are no specific guidelines regarding the

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determination of the best interests of the child. In practice, it seems that the court considers it important to take into account the child’s need to maintain links with and knowledge of her/his biological family; realistic expectations of foster families with regard to the effects of access visits on their own lifestyle; possible behavioural disturbance manifest by children after access visits, which may be distressing to themselves and ultimately may threaten the stability of the placement; and by implication some attention is given to the concept of parents’ rights. In balancing these somewhat competing priorities, it is generally considered that there will be predictable risks to the stability of placements (other than with relatives) if access visits exceed approximately six contacts per year. It does seem that there is a significant difference in Victoria between the application of the provisions of the Children and Young Persons Act for children on Permanent Care Orders and the Family Law Act in determining contact orders for children of separated parents. For children on Permanent Care Orders, there is an implicit recognition that very frequent contact with biological parents has the potential to result in a disturbing conflict of loyalties which may threaten the development of attachment with caring parents. However, while the provisions of the Family Law Act allow for consideration of a number of adverse factors which may be taken into account in support of limiting contact with parents, it is generally considered to be important for children to maintain a relatively high level of contact with both parents, even if there is obvious antagonism between them. It is undoubtedly the case that, for many children, the ensuing conflict of loyalties and confusion about values has a detrimental effect on their emotional adjustment. For each of the parents, there may also be demonstrably negative effects of contact arrangements for children’s emotional adjustment, freedom of movement, and the harmonious functioning of the households in which they reside. Currently, it seems that as a result of decisions of the Family Court regarding contact arrangements for children in highly conflictual situations, creative options are being explored for the development of contact centres in which access can be adequately supervised and children can move between parents with the support of neutral intermediaries. The rights of parents, especially those with a disability Bath (2000) refers to warnings of a new ‘stolen generation’ if the principles of permanency planning lead to a rigid application of framework in terminating the rights of biological families characterised by chronic neglect and abuse of children, without due attention to the circumstances of individual families. The principle of the ‘best interests of the child’ is clearly the foremost

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consideration in legislative frameworks concerned with planning for children. However, it is not difficult to envisage a successful claim on behalf of parents who are manifestly disabled, yet positively disposed towards their children, that they have a right to some resources which would support reasonably frequent arrangements for access with their children, in situations maximally conducive to maintaining positive relationships, and the opportunity to witness and participate in the development of their children over time.

The psychological needs of children—what do theory and evidence tell us? Short-term and long-term considerations—a ‘new’ family for children, or a ‘supplementary’ family In outlining the framework for ‘permanency planning’, Maluccio, Fein & Olmstead (1986) give considerable attention to the importance of children’s biological families, and advocate maintaining contact wherever possible. Case material is included which clearly gives recognition to the psychological pain caused to children by separation from their biological families, and to the issues of identity which persist over time. However, in this theoretical framework, the need for children to experience stable, continuous and safe care throughout childhood is considered to be of over-riding importance. In circumstances in which mentally ill parents are likely to be absent for a number of years, perhaps due to the establishment of a relationship with a new partner resulting in evident abandonment of the child, moving interstate or having a record of long periods of incarceration, plans for permanent care for the children seem to be most warranted. This is especially true if the child has been subjected to extreme neglect and abuse. These placements will be most conducive to the forming of new attachments for the child, minimising conflict of loyalty, and encouraging carers to make significant investment in incorporating the child into their own family. There is no doubt that such children can respond very well to the competent and loving care of foster parents, and that bonds of attachment can be established very well in such circumstances. Developmental delays can be reversed to a considerable extent, and behavioural and emotional difficulties can be ameliorated. Chronic and severe symptoms associated with the mental illness of a parent, and evident lack of alternative parenting figures within the immediate family may also be considered as grounds for the formation of a permanent-care case plan for the child. However, in the absence of other social

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disadvantages, and in the presence of strenuous opposition from the parent and his/her supporters, it may be more difficult in practice to finalise such a case plan. Attachment theory Research findings and practice experience support the critical importance for very young children of maintaining stable and appropriate care arrangements during the early years (Rutter, 1993). This principle is now well accepted in the child welfare field, and is implicitly taken into consideration in balancing the best interests of the child against the claims of parents to be given time to make adjustments in their own lives before resuming care of their children. It is generally considered most important for children to be cared for on a continuous basis throughout infancy, and ideally for care to be continuous throughout childhood. It is also considered important to avoid multiple placements of older children (Cashmore, 2000; Newton, Alan & Landsverk, 2000; Penzerro & Lein, 1995; Wise, 2000). It is also, of course, very important that the care given should be appropriate to the specific developmental needs of the child, given with affection, and involve mutually satisfying interactions. As mentioned above, recent practice directions from the United States support the concept of termination of parental rights within a period of 22 months of continuous out-of-home care of children, in circumstances in which reunification attempts have proved unsuccessful (Barbell & Wright, 1999). While these general practice principles are not currently subject to very much critical analysis, it appears that there has been a considerable shortfall in Australia and overseas in achieving their effective implementation. It could also be argued that care needs to be taken in avoiding rigid interpretation of the principles of attachment theory and permanency planning, in formulating specific practice guidelines where ‘one size fits all’. It is undoubtedly true that over many generations, children have been cared for other than within the homes of their biological parents for considerable periods of time, while bonds of attachment and relationship with parents have been securely maintained. Thus, children have been boarded with relatives, friends, in boarding schools and other settings. The substitute carers in these settings would have been regarded as supplementary attachment figures, with a responsibility to support the child’s sense of belonging with his/her own family. It may well be the case in many such arrangements that the capabilities of the day-to-day carers are superior to those of the biological parents, and that the child may actually prefer his/her day-to-day carers in that role, over direct day-to-day contact with her/his birth parents. However, in such situations there is never a suggestion that parental rights should be terminated, or that the child’s identity as a member of his/her own family will be questioned. 158

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It seems that in the case of children placed in out-of-home foster care, the relevance of attachment theory is at least partly concerned with the motivation of the carers to invest in caring for the child without interference or threat of sudden disruption of the placement. Given the reliance of the current system on carers who are essentially volunteers, this is understandable. However, it is of great importance that the short-term and long-term needs of caring families are also taken into account, and that as the placement progresses, carers are not subjected to unexpected challenges and disappointments in the relationships between themselves and the children in their care, which might have been predicted. It is also important that termination of parental rights is not always seen to be a necessary accompaniment to the provision of long-term, out-of-home care for children. What can the children tell us? In working with children as a child therapist over many years, the writer has found that children in foster care have displayed in their free play intense identification with a same-sex parent, and quite clear understanding of their vulnerabilities as parents. They have enacted scenarios involving medical ‘cures’ of their parents’ conditions, the involvement of healers and rescuers who might somehow change the situation, and they have also often demonstrated a sophisticated view of the roles of extended family members. These features of the children’s play have been present for children as young as 3 and 4 years old, and also in situations in which foster parents believed that the children had very little interest in maintaining contact and bonds of affection with their parents due to the severity of neglect and abuse that had occurred. These views of the children may not necessarily argue for reunification with parents, or even increased contact. However, it does seem that, in an ideal situation, foster parents need some understanding that the child does indeed have a biological and psychological ‘family’ that is separate from her/his inclusion in the foster family. This may be difficult to expect from foster parents, whose altruistic motivations for offering ‘permanent care’ to children would often not extend to welcoming the biological family of the child as some kind of extended psychological family of their own. However, it seems likely that if foster parents cannot acknowledge the continuing feelings that children may have with regard to their membership of their biological family, then the behaviours of the children as they mature towards adolescence are likely to cause disappointment and distress. Bath (2000) has discussed these issues, including case examples from his own experience in the child welfare sector in New South Wales, in a recent symposium devoted to exploring challenges and controversies in the permanency debate. It is also the writer’s experience that many children can clearly state their opposition to plans for reunification with their parents, at least for the time Issues relating to long-term, out-of-home care for children of parents with mental illness

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being. This seems to be based on their perception that they will not be safe in their parent’s care, and a recognition that the care they are receiving from alternative carers is appropriate and satisfying. A smaller number of children state adamantly that they do not wish to participate in access visits. This seems mostly to occur in cases in which there has been severe verbal and physical abuse of a child by the parent, and in which parents have developed strongly negative attitudes towards the child. However, it is important to recognise that both short-term issues relating to the adequacy of care for children and longer-term issues relating to identity and family membership need to be taken into account. Many studies have supported the findings of Cashmore (2000) that children are likely to seek out contact with their birth families when they themselves reach maturity. It seems possible to argue in the particular case of children with parents who are mentally ill, yet who consistently maintain motivation to keep contact, care and concern for their children, that in terms of Maluccio’s key question, they will indeed ‘have a family when (they) grow up’. It may well be that they will have more than one ‘family’.

Realistic expectations of the child welfare system as it relates to provision of services for children and families— limitations and possibilities Recent discussion papers from the Child Welfare League of America (Barbell & Wright, 1999) have highlighted a finding which has been the experience of many generations (Wolins & Piliavin, 1964) that the expectations of a system of foster care in comprehensively meeting the needs of children displaced from the care of their biological families in a timely and continuous fashion have been seriously disappointed. The current strategy adopted in the United States of enacting legislation for swift determination of the need to terminate parental rights, and encouraging timely adoption, are also predicated on the assumption that families can be found who will have sufficient skills, support and altruistic motivation to volunteer to include some extremely vulnerable children within their own families on a long-term basis. It is perhaps surprising that the system works as well as it does for large numbers of children placed in the care of non-relative families on a long-term basis, rather than the fact that many families find the demands upon their resources too great to meet in the long term (Delaney & Kunstal, 1997). Another issue relates to the question of the intensity of family support services that can reasonably be expected to provide for families over time. Madeleine Kelly (1999) argues persuasively that, ideally, parents with a mental illness may require an ‘understudy’ on a long-term basis, so that at times of particular stress significant aspects of the parent’s role can be taken over by a trusted, familiar person. 160

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As an alternative to complete termination of parental rights, there have been suggestions of a model involving ‘shared care’. Although the specific programs described in the special edition of Child Welfare (Barth & Price, 1999) are all of short-term duration, there has been at least one trial placement in Victoria in which care is shared on a long-term basis between a birth parent and professional carers rostered for duty within the home. In Victoria, the Children and Young Persons Act introduced a provision in 1998 that guardianship could in some circumstances be shared between permanent care families and biological parents.

Directions for the future There are no simplistic solutions to some of the dilemmas outlined above. Six possible avenues for future program planning seem to be indicated. These are: •

•

•

It seems imperative that the feasibility of creative options for shared care should be explored for some children and families in which mentally ill parents are unable to assume responsibility for the fulltime, long-term care of their children. This may sometimes occur effectively in cases in which care for the children is assumed by members of the extended family of the parent. However, in these situations, and certainly when children are cared for by unrelated adults, there can be difficulties, as outlined above. In many, if not most cases, these difficulties should not be seen as overwhelming, and prohibitive of parents’ assuming significant roles in relation to their children. Resources should be allocated so that contact visits can occur in situations maximally conducive to developing and maintaining positive relationships between parents and their children. Parents should be given the opportunity to witness and participate in the development of their children over time. For some families, this may involve continuing arrangements for supervision of access visits, careful arrangements for transition between venues, and clear guidelines for the conduct of parents during the visits. Parents may need independent avenues for personal support, in coping with the restrictions that have been imposed on contacts with their children. If contact between motivated parents and their children is to be strictly limited, the basis for such decisions needs to be clearly specified within a legislative framework. It does seem that contacts between children and their biological parents may in some cases need to be quite limited, or terminated >> Issues relating to long-term, out-of-home care for children of parents with mental illness

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•

•

•

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altogether, at least for a time. This may apply in cases in which there has been a history of severe abuse and neglect of children, associated with traumatic memories, and further emotional provocation during access visits with parents. If parents overtly attempt to undermine children’s attachment with their caregivers, contact visits may also need to be regulated very carefully. However, current legislation under the provisions of the Children and Young Persons Act (1989) fails to specify the factors to be taken into account with respect to determining contact arrangements between parents and their children who are subject to child protection orders. This is in contrast to the specification of factors to be taken into account in determining contact between children and their parents under the provisions of the Family Law Act (1975). The absence of parents for significant periods of time, or periods of extremely unstable and provocative behaviour, should not be construed as meaning that the parent may have no positive relationship with their child in the future. In these circumstances, a care order which promises long-term stability and security to a child may be appropriate. However, it may be inappropriate and unrealistic for an expectation to be engendered with the carers and with the child, that the parent of the child will be unlikely to fulfil a significant role for the child in the future. Foster carers, permanent carers and adoptive parents need and deserve considerable financial, professional and personal support in the task of caring for the vulnerable children of mentally ill parents. This is especially the case when it is necessary for the caring family to adapt to the inevitable intrusion on their own family life, contingent on some recognition of the continuing significance to the child of the biological family. In these situations there is a role for counselling staff from agencies responsible for coordinating care arrangements for children in sometimes acting as a ‘buffer’ between caring families and the parent of the child, and sometimes facilitating contact and mutual understanding. It is essential for the psychological health of children that they perceive themselves as living in a social and family context which has coherence and connection. It is important that the system devotes resources to maximising positive links between the parts of the child’s psychological world, and ensuring that transitions occur with assistance from adults who have some familiarity with the world of the child.

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The adverse effects of children experiencing multiple, consecutive placements with unfamiliar caregivers have been well documented. However, it is also damaging for children to feel that there is an unbridgeable gulf between the values and interests of significant attachment figures. This can certainly occur if there is no recognition by carers of the significance of the child’s birth family, no awareness of what happens at contact visits, and/or overt antagonism towards the birth family. Carers may naturally express opposition to the abuse and neglect that children may have suffered, but it is important that they give some recognition to the child’s perception of their past family circumstances. In order to achieve this, it is important that they are supported by staff responsible for the placement of children on a continuous, and sometimes quite intensive basis.

References Barbell, K. & Wright, L. (1999) ‘Introduction: Family foster care in the next century’, Child Welfare: Special issue family foster care in the next century, 78, pp. 3–9. Barth, R.P. & Price, A. (1999) ‘Shared family care: Providing services to parents placed together in out-of-home care’, Child Welfare: Special issue family foster care in the next century, 78, pp. 88–101. Bath, H. (2000) ‘Rights and realities in the permanency debate’, Children Australia, 25, pp. 13–17. Borland, M., O’Hara, G. & Triseliotis, J. (1991) ‘Placement outcomes for children with special needs’, Adoption and Fostering, 15, pp. 19–27. Cashmore, J. (2000) ‘What the research tells us: Permanency planning, adoption and foster care’, Children Australia, 25, pp. 17–22. Children and Young Persons Act (1989) Melbourne: Victorian Government Printer. Delaney, R.J. & Kunstal, F.R. (1997) Troubled transplants: Unconventional strategies for helping disturbed foster and adoptive children (2nd edn), Oklahoma City: Wood’N’Barnes. Family Law Act (1975) Canberra: Attorney-General’s Department. Katz, L. (1999) ‘Concurrent planning: Benefits and pitfalls’, Child Welfare: Special issue family foster care in the next century, 78, pp. 71–81. Kelly, M. (1999) ‘Approaching the last resort: A parent’s view’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Maluccio, A., Fein, E. & Olmstead, K. (1986) Permanency Planning for Children, New York: Tavistock.

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Newton, R.R.L., Alan, J. & Landsverk, J.A. (2000) ‘Children in foster care: Disentangling the relationship between problem behaviours and number of placements’, Child Abuse and Neglect 24, pp. 1363–74. Penzerro, M.R. & Lein, L. (1995) ‘Burning their bridges: Disordered attachment and foster care discharge’, Child Welfare, 74, pp. 351–66. Picton, C. & Boss, P. (1981) Child Welfare in Australia: An introduction, Sydney: Harcourt Brace Jovanovich. Rutter, M. (1993) ‘Intergenerational continuities and discontinuities in serious parenting difficulties’, in D. Cichetti & V. Carlson (eds) Child Maltreatment: Theory and research on the causes and consequences of child abuse and neglect, Cambridge: Cambridge University Press. Sheehan, R. (1999) ‘The Children’s Court and child protection: The primacy of the socio-legal response to child abuse’, Australian Social Work, 52, pp. 5–10. Sheehan, R. (2000) ‘Family preservation and child protection: The reality of Children’s Court decision making’, Australian Social Work, 53, pp. 41–46. Swain, P. & Ban, P. (1997) ‘Participation and partnership: Family group conferencing in the Australian context’, Journal of Social Welfare and Family Law, 19, pp. 35–52. Taylor, C.G., Norman, D.K., Murphy, J.M., Jellinek, M., Quinn, D., Poitrast, F.G. & Goshko, M. (1991) ‘Diagnosed intellectual and emotional impairment among parents who seriously mistreat their children: Prevalence, type, and outcome in a court sample’, Child Abuse and Neglect, 15, pp. 389–401. Tomison, A. (1996) Child Maltreatment and Mental Disorder, Discussion Paper No. 3, National Child Protection Clearing House, Melbourne: Australian Institute of Family Studies. Wise, S. (2000) ‘Permanent family placement for children unable to live with their birth families: Challenges and controversies. Introducing a symposium on permanency planning’, Children Australia, 25, pp. 4–6. Wolins, S. & Piliavin, I. (1964) Institution or Foster Family: A century of debate, New York: Child Welfare League of America.

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Cultural considerations

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13

GUY COFFEY and W E N DY F R O M H O L D

An approach to cross-cultural competence In clinical discussions, ‘cultural factors’ are sometimes spoken of as objective attributes of the client rather than as the mental health clinicians’ registration of cultural difference between clients and themselves. When considering the situation of a child with a mentally ill parent, self-evidently the language we employ cannot but involve cultural norms. This is true as much when we describe families who are culturally similar to our own as when they are culturally very different. Families are ‘patriarchal’, ‘permissive’ in their child-rearing practices, encouraging of the open expression of emotional distress or tending to confer responsibility on younger children only in relation to some set of preconceived norms. This chapter assumes some understanding of the cross-cultural skills required in multi-ethnic settings, and asks how they apply in the specific context of the child with a mentally ill parent. It is useful, however, for the purposes of our discussion to indicate what the scope of cross-cultural skills is assumed to be, and how these skills relate to the question at hand. Most commentators in the field of cross-cultural competence will point to the need for clinicians to be aware of the values and beliefs they bring to their practice and how these shape their judgements (see Andary et al., 2003, especially chapters 2 and 3). All aspects of the assessment of mental status are potentially liable to culturally based misapprehension: assessing thought content, affect and personality have been identified as particularly subject to error. This is most obvious for thought content because abnormal ideation and delusions can’t be ascertained as such without knowing whether the

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belief is accepted as normal within the patient’s subculture. Cross-culturally differing norms in the expression of affect (for example, Jenkins et al., 1991) is a source of clinical misinterpretation. In a study by Stolk (2002), the majority of mental health clinicians surveyed believed that their skills were poorer when assessing mood and affect in clients of a non-English speaking background, as compared to English speaking background clients. Assessment of personality is particularly difficult without considerable experience with the cultural group in order to determine the range of normal variation in personality traits. Allied to the culturally competent clinician’s need for ‘self-knowledge’ is an awareness of the cultural assumptions underlying methods of assessment, treatment and intervention. For example, many standardised assessment instruments have norms developed for Anglo-American populations and are of unproven validity for other populations (Flaherty et al., 1988; Bontempo, 1993; Kortmann, 1987). Pharmacotherapy dosing regimens and side effect profiles may need to be adjusted for populations outside those for whom they were originally developed (Lin et al. 2001; Lambert & Minas, 1998). In relation to psychological treatments, Western psychotherapies have a culturally specific concept of the self in which health and maturity are equated with a capacity for autonomy, a strong sense of individual identity and the ability to be guided by rationality. The form and content of individuals’ thinking are regarded as a primary source of distress and the principal site for intervention. For persons from cultures with socio-centric notions of selfhood or who regard their troubles as emanating from, for instance, fate, ancestral misdeed, supernatural influence or social oppression, orthodox psychotherapy is at best likely to lack face validity and could, in fact, be harmful because it may provide a further experience of alienation and disorientation. All elements of cross-cultural competence are, of course, inseparable from a range of communication skills including the ability to work with interpreters and to understand the cultural meaning of non-verbal communication. Ideally, in assessing children and their mentally ill parents, we are equipped with these skills as well as substantive knowledge of the client’s culture. We would then be aware of the ‘ideal type’ (see Giddens, 1971) or ‘normative’ family of the client’s cultural group and how it has been affected by migration and acculturation. We could describe the normative family in relation to family structure; family member roles (and how these are gendered and agerelated); lines of authority; patterns of communication and emotional expression; and concepts of parenting, child rearing and a child’s developmental milestones, to name but a few relevant variables. The possession of this knowledge would be ideal, but it is highly unrealistic to

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expect any clinician to hold it. In urban Australian settings, many clinicians within mental health or counselling services are working with populations containing dozens of cultural groups. Moreover, the requisite epidemiological data are often not available or have been gathered within a host culture different to our own. In any event, while often very useful, these data are never definitive of the family being assessed: if it is regarded as such, the result will be cultural stereotyping. The approach adopted in this chapter is not to attempt to impart substantive knowledge about particular cultural groups, but to suggest ways in which the clinician can gather the data necessary to make clinically informed judgements. This approach assumes that it is investigatory skills that the clinician primarily needs: what has to be known are the questions that need to be asked and how to answer them. Applying this approach, we describe ways in which to identify the key cultural considerations in understanding how parental mental illness affects children. One further note on the focus of this chapter. The perspective described is gained from the vantage point of an adult mental health service. It will be evident that we come to the child’s situation by means of assessing the parent, and consequently there is an emphasis on the initial assessment of parental mental illness. A child mental health service would approach the questions addressed here differently, by beginning with an understanding of the child’s situation and moving to the effects of parental mental illness as one of a number of significant influences on the child’s well-being. In reality, both approaches are needed and should be concurrent and coordinated.

Cultural dimensions of children’s experience of their mentally ill parent In culturally diverse societies such as Australia, the cultural norms that inform clinicians’ approaches to mental illness, and clients’ understanding of their illness, are often markedly divergent. While cultural difference is an ever-present reality, mutual misunderstanding need not be. We commence our discussion with a case example involving a Chinese–Australian family. An examination of this case illustrates some of the cultural dimensions to understanding the situation of mentally ill parents and their children. Having identified these cultural variables, we discuss them at greater length.

Vignette 1 Mrs X, a 30-year-old woman from the People’s Republic of China who had come to Australia with her husband and daughter 5 years earlier, was referred to a community mental health service by a general practitioner. Mrs X stated that she felt weak and suffered insomnia. >>

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Her specific request was that she needed something to help her sleep and to overcome feeling ‘weak’. She initially did not identify any other outstanding issue, and expressly denied any other psychiatric symptomatology. Mrs X said her thinking was not self-denigratory, nor did she experience feelings of guilt. She had no history of mental illness. Her view of the future was that she would be able to regain her normal ability to fulfil her domestic responsibilities and to attend her English classes once she began to sleep well again and overcame her ‘weakness’. Mrs X had stopped attending classes, struggled to get things done around the house and was not seeing friends as regularly as was usual. In the third interview she mentioned that her 8-year-old daughter had become very disobedient and that, feeling unable to discipline her adequately, was making plans to send her to live with her (the daughter’s) maternal grandmother in China.

Gathering culturally relevant background information First of all, in developing an understanding of this woman and her family’s circumstances, one would want to know about their pre-migration experiences, their reasons for emigrating and their experiences of settling in Australia. The couple were both professionally educated and believed that migration would be beneficial to their careers. Mr X also believed that his political involvement as a student might have jeopardised his prospects for rapid advancement. They were unsure whether they would return to China in the future. Both had found adapting to Australia more difficult than they had expected. Mr X found that work-place practices were very different from those he was accustomed to. Mrs X had been unable to find professional work, and instead worked in a restaurant kitchen. Mrs X said that their 8-year-old daughter, T, had done well at school, with teachers reporting that after learning English rapidly she was making good scholastic and social progress. However, at home Mrs X found T to be moody and disobedient, and felt exhausted by her demands. In interviewing the couple it became evident that Mrs X had struggled to be attentive to her child for about 2 years, and that T was largely unsupervised until her father came home late in the evening. Mrs X said that she felt T didn’t listen to her at all and made her own rules— when and what to eat, what television programs she would watch, and when she would do homework. In understanding the salient cultural dimensions to this case, there are some background issues that are common to many immigrant and refugee groups. The family’s decision to leave China was partially, at least, compelled by political circumstances. Their expectations of career advancement in

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Australia, particularly for Mrs X, had not been realised. The family was finding it difficult to maintain relationships with compatriots because most of them were very busy and lived at some distance, and there appeared also to be an element of discomfort in having others know that things had not worked out as well as had been expected. On this latter point, exploring the client’s perceptions of compatriot and family expectations in relation to what constitutes ‘successful migration’ can offer a perspective on the pressures the immigrant might be experiencing. However, Mrs X did not initially identify disappointment with her life in Australia as contributing to her problems. This may have been because it, in fact, was not a concern for her, but equally because there was an element of shame in admitting to a sense of failure. In order to discover what was actually happening required time and the development of trust in the therapeutic relationship, and some knowledge of how shame operates in the family’s culture: by what is it invoked, how is it expressed?

Identifying the family’s perspective on parental mental illness and its consequences for parent/child relationships Mrs X did not visit a mental health service for at least 2 years after the onset of her problems; the result being that she was distressed and disabled by her condition for an extended period, and her daughter had the experience over this time of a mother who was relatively unresponsive to her needs. The reason psychiatric assistance wasn’t sought earlier was partially due to ignorance regarding available services, but largely because of how Mrs X had conceptualised her problem. In exploring what she thought the nature of her problems were, Mrs X volunteered that she felt she was ‘fated’ to misfortune. She felt that her lethargy and weakness, her ‘failure’ as a mother and her thwarted professional career aspirations were all pre-ordained. She believed that she was ill-fated owing to ancestral disapproval, and recalled that an uncle, who was recognised by her family of origin as possessing powers of clairvoyance, had looked at her hands when she was a child and told her parents that she would suffer much hardship in her life. Mrs X said that she had attempted to alleviate her feeling of weakness—which she ascribed to an imbalance of physical energy, which in turn was due to fate—by seeing a number of practitioners of Chinese medicine, but their treatments had afforded only partial and temporary relief. Mr X was less sure that fate was the cause of the problem, but considered that ancestral disapproval may be playing a role, together with ‘stress’ and an energy imbalance or an undiagnosed illness. The couple were very concerned by their daughter’s misbehaviour and lack of deference to her mother’s authority. They attributed this to Mrs X’s inability to be more actively involved with her, and the influence of Australian-born children. They were also aware that some of T’s

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social needs were not being met: Mr X reported that T had complained that sometimes ‘mum just stares and does nothing’, or becomes angry for no reason, and that she doesn’t take her to visit other children when T has been invited to their place. The decision to send T to the care of her grandparents was an attempt to have her instilled with the correct attitude towards her family, although was likely to do nothing to assist the couple’s sense of failure, and would be disruptive to T’s attachment to her parents, her schooling and her friendships. This case raises a raft of issues in relation to assessment and service provision. Working with a Mandarin interpreter, interviews were conducted with the couple, and with the couple and child at home. Issues that arose in the assessment included culturally based prohibitions on the expression of marital discord; shame in relation to being unable to deal with the daughter’s disobedience; the extent to which the daughter’s behaviour was understandable as a matter of ‘discipline’; and some discomfort about our independent assessment of the daughter (which is hardly a culturally specific anxiety). The place and form of discipline employed by immigrant and refugee parents can be a vexed matter for them. A survey of staff working with parents and children of Vietnamese, Cambodian and Spanish-speaking backgrounds suggested that parents ‘were unable to rely on their traditional disciplining methods, and they were unable to effectively put into practice disciplining techniques acceptable to mainstream Australia’ (Sozomenou et al., 2000). The range of services one might normally consider involving—home-based council services, after-school childcare, parental support services including parental skills groups, child mental health services and protective services— all needed to be thought about and discussed in relation to language access and cultural meaning.

‘Explanatory models’ of mental illness: Their relevance to seeking help, treatment and engagement with families and children Many cultural minority groups are under-represented in their attendance at mental health services (Klimidis et al., 2002; Stolk, 1996), and the time between the onset of illness and presentation at the service may be longer for members of these groups than for the Australian-born (see Andary et al., 2003). The reasons for this include lack of awareness or negative perception of mental health services, lack of recognition of mental illness, and stigma associated with mental disorder. The consequences of delayed attendance or non-attendance, apart from the ill person continuing unnecessarily to suffer often distressing symptoms, are increased likelihood of illness chronicity, a

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greater likelihood that treatment will be involuntary and through hospitalisation, and greater family burden. A range of measures have been undertaken by public mental health services to increase minority group access to, and utilisation of, these services. These measures include, within the Victorian public mental health context, research regarding service utilisation by the Victorian Transcultural Psychiatry Unit; the creation of regionally based Ethnic Mental Health Consultant positions; the employment of bilingual mental health clinicians at community mental health centres; and the provision of cross-cultural sensitivity training to mainstream services. Ideally, such service and community development should be undertaken in conjunction with child and adolescent mental health services. From the point of view of the child, delayed treatment increases the risk that the child will be adversely affected by the parent’s mental disorder. The client and family’s explanation for the client’s illness not only influences how they seek help, but also their engagement with the service. If the client and family’s explanatory model of the illness is incongruent with the psychiatric understanding to which the clinician subscribes, then mutual misunderstanding and disengagement is likely to result. In the case of Mrs X, ignoring her account of her disorder, peremptorily diagnosing depression and immediately proceeding to provide conventional treatments for that disorder would not only be a repudiation of her experience, but would also be unlikely to succeed. (In fact, Mrs X had been treated with antidepressants by the referring general practitioner, with no positive response.) With regard to psychosocial interventions, counselling directed to marital and family relationships and parenting skills is a foreign concept to many people whose cultural roots lie outside the European and North American middle classes. The traditional forms of healing in many non-Western cultures contain no analogue to psychotherapy or family counselling; indeed, the concepts often have no linguistic equivalent and cannot be directly translated. In Mrs X’s case, it was necessary for the clinicians to inform themselves as to how ‘common’ mental disorders manifest within the relevant cultural group, together with that group’s ‘culture bound syndromes’. A depressive-like state common in China—in which exhaustion and diffuse bodily complaints are considered primary symptoms—and the mood elements of depression, if experienced at all, are subject to less focus (see Kleinman, 1986), seemed to provide the best fit with the observed clinical picture. Forming a treatment alliance required the finding of common ground. The couple wanted to create a more nurturing environment for their daughter, and were motivated to find assistance that would allow Mrs X to fulfil her maternal role in a way that met their expectations.

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Finding a mutually acceptable account of the client’s problem when the clinician’s and the client’s perspectives are discrepant has been described as a process of ‘negotiating explanatory models’. A successful outcome of this negotiation can involve an integration of the viewpoints—that, for example, Mrs X, while subject to the dictates of fate, might nonetheless accept treatment to assist in everyday life; and/or a pragmatic agreement in which both traditional and psychiatric treatments are pursued simultaneously.

Gaining an account of the family’s explanatory model Several commentators have outlined ways in which the client’s culturally based explanatory model is elicited with the aim of acknowledging and respecting this understanding, explaining how it is similar and how it differs from the Western psychiatric perspective, and how a treatment approach might be devised that is compatible with the client and family’s viewpoint. Acquiring an account of the family members’ explanatory model will involve them answering at least the following set of questions (adapted from Andary et al., 2003, p. 86 and Kleinman, 1980): •

‘What do you call your (your relative’s) problem? Does your family believe this is the problem? What is this kind of problem called in your country of origin?’

•

‘What has caused this problem? Are there a number of possible causes? Why do you (why does your relative) have this problem now?’ (The causes may be multiple and involve explanations based on physical changes to the body (for example, nerve weakness; imbalances in vital energies); or supernatural and spiritual influences (for example, fate, ancestral retribution, spirit possession, sorcery).)

•

‘How is this problem recognised and what does it do to those who suffer from it?’ (This question may elicit experiences not identified in a standard mental status examination.)

•

‘What do people in your community think of this problem?’ (An attempt to elicit the condition’s cultural meaning.)

•

‘What kind of treatment do you think you (your relative) need(s) for this problem? In what way are people who have this problem treated in your country of origin?’

Recognising what is not culturally specific Just as cultural phenomena can be misinterpreted as mental illness, the reverse can occur, often as a result of stereotyping. The result is that experiences that are the result of mental illness are attributed to a culturally 174

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normal mental state. In Mrs X’s case, the treating clinicians did not abandon the possibility that Mrs X was suffering from lowered mood in face of her account of what was occurring: instead, what was concluded was that her lowered mood did not in itself adequately describe what she was experiencing, nor did it define the treatment approach. If, instead, the diagnostic formulation had been completely based on Mrs X’s account, the result could have been that no mental disorder would have been identified at all. Cultural informants including family members are often invaluable in indicating whether the client’s experience falls within normal cultural limits. However, our experience is that occasionally a family, initially at least, normalises the family member’s mental illness by way of a cultural explanation. An example of this in one of the authors’ experience involved an older Italian man who attempted to drown himself in a river after his daughter had become involved with a man he (the father) regarded as unsuitable. The man’s wife and children concurred that his problems were largely a consequence of the family dispute, and were critical of him for holding onto values of the past. With exploration of the family’s thoughts about the father in greater depth, however, it transpired that family members were not convinced that his reaction was explicable in terms of his beliefs (he hadn’t, in fact, been particularly traditionally minded in relation to the children previously), and a diagnosis of major depression was made. Culture in such instances is used as a camouflage in the service of denial. The family’s actual anxieties about the ill family member usually emerge as trust in the clinician grows. While this process is unfolding, and at the earliest possible opportunity, any impairment in parenting capacity needs to be identified and the consequences for children evaluated.

The consequences of parental mental illness for children of refugee and immigrant families A child’s understanding of a parent’s mental illness is obviously age-related and an amalgam of idiosyncratic ideas, egocentric versions of family specific and culturally based belief, and learning from outside the family. Our experience is that children, even of early primary school age, often know something is amiss with their mentally ill parent, but interpret what’s happening according to their own needs and egocentricity, and in view of what the family communicates directly and indirectly. Children of refugee and immigrant families who have a parent with a mental illness face many complex challenges. For these children, the demands of settlement and adaptation to the host culture is compounded by the confusion and distress that parental mental illness can create. Cultural considerations in understanding parents with mental illness and their children

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Children adopting the views of their mentally ill parent Children may believe that their mentally ill parent’s view is correct even though they recognise it as different from others’ beliefs. This is not a culture specific issue; however, in families which have more recently settled in a new country, it can be more prominent because of a child’s strong attachment to his or her family’s beliefs in the face of an unfamiliar environment. An example involved a single mother from a rural Philippines background who told her primary school-aged children that their school lunch would be poisoned as a form of spiritual retribution, so that they kept their lunch boxes hidden at all times: her children knew other children did not have such concerns, but thought nonetheless that their mother’s view was accurate.

The conflicting cultural demands on children Older children who have grown up in Australia may have acquired views on their parent’s disorder that are similar to those in the host culture; this can create an additional source of tension in the family. It also places a demand on children to reconcile conflicting ideas before they have the cognitive and emotional maturity to do so. Exploring the child’s beliefs about what is happening at home may need to be done, in part at least, in the absence of other family members if there are culturally prescribed barriers to children voicing opinions that conflict with the parental view. It’s also important that this occurs in conjunction with the parents being informed about the ‘psychiatric’ perspective on mental illness in order that differences in perspective are not heightened by the clinical intervention. We know clinically that hearing only the perspective of parents sometimes leads to the under-estimation of children’s difficulties, and research findings confirm this. Several studies, for example, have demonstrated that refugee parents significantly under-estimate the levels of post-traumatic symptoms experienced by their children (Almqvist & Broberg, 1999; Kocijan-Hercigonja et al., 1998). Parental and childhood trauma is discussed later in this chapter. A further barrier to children’s communication about their circumstances is associated with culturally based stigmatisation of mental illness. Mental illness, in its more severe forms at least, is stigmatised in most cultures. The effects of stigma can be magnified in traditional collectivist cultures and in cultures which ascribe mental illness to familial or ancestral misdeeds or to the retribution of respected spiritual beings. In such cultures the stigma of mental illness often attaches itself not just to the mentally ill individual, but also to his/her whole family. Children can be implicated in this, and their friendships, standing in the community and marriage prospects may be adversely affected (see Anna’s story below). Along with the rest of the family, children may be required to collude in concealing knowledge of the parent’s 176

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mental illness from public knowledge. It is essential to recognise the tensions involved in being loyal to their family and acceptable to their peer group.

Children’s place within the family Anna’s story I didn’t know that my mother had a mental illness until I was 18 years old. I discovered this by accident when a class mate spoke about her brother who had recently suicided by jumping in front of a train. The way she described her brother sounded similar to how my mother was . . . we both ran out of the room, crying and hugging each other. I was not told about my mother’s illness. It was seen as a shameful thing in my culture. As a little girl I was told by my father and my extended family that she was ‘a little bit sick’ and I accepted this as being normal. I did not find it odd that she often cried a lot, slept a lot and was aggressive towards visitors . . . That’s all I knew. My father and extended family protected me from some of her behaviours. They did this by not saying anything about what was happening or even letting me see what was happening. I remember being taken to see Mum at [the] psychiatric hospital but I thought that it was just a normal hospital as nobody told me otherwise . . . I remember we saw someone at the hospital: we were told that ‘you will need to be split up’. This was the solution to the problem, to be separated. This was not an option for my family; we were devastated to hear this. This made my family realise that we really had to deal with things by ourselves . . . they didn’t understand our culture. When I was a young girl my mother was often away for varying periods of time. I didn’t know why. I thought it was the normal thing to happen. When she was away my aunty would stay with us. In some ways I saw her as my mother. I thought my mother was bad because she couldn’t cook, clean and the house was always messy. I thought she was bad because she couldn’t perform any of her roles like other mothers. Everyone would constantly say that she was bad. They used to refer to her as the ‘trelli’, you know, the crazy one. As a child I felt like a parent. I grew up quickly, looked after my sister, cooked, cleaned and this was in primary school, and then in high school. I also worked at Coles. I can’t remember a lot of things . . . everyone used to say how mature I was for my age. I remember teachers commenting on this during parent–teacher interviews. I can’t >>

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ever remember feeling like a kid. None of this was ever a choice for me. Being Greek meant that there was a lot of pressure to keep an image, to make sure the house was spotless, that meals were cooked beautifully and presented well for visitors. It was about keeping face. It was all image. That was seen as important. There was a lot expected of me too because of my gender. If I was a male things would have been different . . . I fulfilled every role as child except that of a daughter. I am trying to be a daughter to my mother now in my adulthood . . . Things could have been better if there were more supports for my dad as he didn’t understand. He saw my mum as crazy . . . There is a poignancy to this story which speaks across cultural difference and which pervades the experience of many children with a severely mentally ill parent, irrespective of their background. The mother’s story is equally sad: although suffering from delusions much of the time, she recognised that she hadn’t been what she would have liked to have been for her children. She often complained when the children were growing up that she didn’t have the feelings she should have had for her children, and thought that someone or something had removed normal emotions from her heart. While aspects of this account would be familiar to many children with a mentally ill parent, the young Greek–Australian woman who told this story suggests that her experience was to some extent shaped by distinct cultural influences. The mother’s illness was strongly stigmatised; she was considered both bad and crazy. The mother herself believed her illness was due to sorcery, which created obstacles to engaging her in psychiatric treatment. The daughter believes that the pressure on her to create a semblance of normality domestically was amplified by cultural prescriptions: a high store is placed on maintaining appearances for the community, and a daughter has a responsibility to ensure this is achieved. In relation to mental health services, the daughter’s experience has been that services lacked an understanding of the family’s culturally based way of coping with the mother’s illness and offered unrealistic solutions. The over-riding theme in this account is of a childhood that was burdened by adult responsibilities and that was rarely carefree.

The burden of expectation in immigrant families One of the authors attended a gathering of families of Polish Jewish holocaust survivors. At one point during the gathering, an elderly man cast his eye over the three generations of Australian-born family present, and said aloud: ‘these 178

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people are my revenge against Hitler’. The comment captured some of the complexity of a child’s place in refugee families. They are sources of pride, the bearers of hope in the new world, and the living embodiment of a triumph over adversity. Children thus regarded by an older generation may well feel cherished, but there is also a weight of expectation which may be a source of tension for them (Hyman et al., 2000). For school-aged and especially adolescent children, parental mental illness complicates their role further: pre-existing expectations have to be fulfilled alongside a range of additional responsibilities. The tendency for immigrant children to acquire English more rapidly and adapt more quickly to the host culture than their parents, and subsequently to become spokespeople for their families, is magnified if a parent’s condition impedes successful settlement. Consequently, children may be placed in a position in which they assume adult responsibilities in a family whose cultural values might normally prescribe strict deference to parental authority and in which they still bear strong familial pressures to succeed in age-appropriate educational and social pursuits (for example, Rees, 2003). The authors have assessed single-parent refugee families in which children in early adolescence have responsibility for running the household while the parent, sometimes profoundly affected by pre-migration trauma and loss, struggles to adapt to the demands of settlement. These children may also become preoccupied with the parent’s mental state and monitor it constantly. Undoubtedly, the absence of both a well parent and an extended family who could support the ill parent and regulate the children’s roles significantly contributes to such parent–child arrangements arising.

Mental illness in refugee families: Understanding children’s vulnerability Vignette 2 Ms D, a 30-year-old asylum seeker from a Horn of Africa country, spent 18 months in an Australian immigration detention facility. She developed a psychotic depression after about a year in detention, and was admitted to a psychiatric hospital. She had been in detention with her two daughters, aged 5 and 7 years. Ms D held, in the context of her depression, a belief that her children didn’t want her to be their mother. When admitted to hospital, the children were placed with a relative of Ms D’s. After hospitalisation Ms D remained in detention for a further 6 months until she was granted a bridging visa. One year post-detention, and receiving continuing treatment, >>

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her depression had improved, but she was still experiencing posttraumatic symptoms related to living through a civil war and witnessing family members being killed. Ms D had not heard news about the whereabouts of her husband and older children since she became separated from them while fleeing her country. Her children appeared well and were attending school and kindergarten. In the course of asking about her sleep, Ms D mentioned that she became intensely frightened at night, and had her 5-year-old sleep in the same bed as her. She further said that her child was incontinent at night and she therefore wore nappies to bed.

Children in refugee families are especially vulnerable to parental mental illness (see Thomas & Lau, 2001, who review much of the literature in this section). They are more likely to have parents with a psychological disorder than the general community (Silove, Steel & Watters, 2000) and to suffer from an increased incidence of disorders themselves, when compared with nonrefugee peers (see Thomas & Lau, 2001; Hodes, 2000; Tousignant et al., 1999). The coincidence of parental and child psychological disorder due to both having been exposed to trauma is illustrated, for example, by the study of a highly traumatised group of Cambodian refugees reported by Sack et al. (1994). Post-traumatic stress disorder rates for mothers and fathers were 53 per cent and 29 per cent respectively, and depression rates were 23 per cent and 14 per cent respectively, while their children aged 13–25 years had an 18 per cent prevalence of post-traumatic stress disorder and an 11 per cent rate of depressive disorder. Studies of psychological morbidity among adult refugees assessed in their country of asylum have found variable prevalence rates of up to two-thirds or higher of the population examined (see Carlson & Rosser-Hogan, 1993; Westermeyer, 1988; Hauff & Vaglum, 1994). The most common disorders in refugee populations are depression, post-traumatic stress disorder and other anxiety disorders, and rates of comorbidity are typically high (for example, Hubbard et al., 1995). Some studies have found that symptoms diminish rapidly after settlement (Beiser, 1988; Westermeyer et al., 1989), but other findings describe the persistence of high rates of disorder over many years (Hauff & Vaglum, 1995; Chung & Kagawa-Singer, 1993). Levels of pre-migration trauma are positively correlated with rates of disorder, and psychosocial stressors associated with settlement variables strongly mediate psychological well-being (Steel & Silove, 2000). Child refugees from many different countries of origin have also been found to exhibit high rates of psychological disorder following migration, with the expected positive correlation between levels of exposure to trauma and post180

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traumatic stress disorder prevalence (Thomas & Lau, 2001; Slone, Adiri & Arian, 1998). Broad cross-cultural similarity in the forms of psychological disturbance have been found. Symptom patterns appear in general terms to follow those seen in Western populations; that is, anxiety reactions, phobias, play with traumatic themes, aggressive behaviour, regression and social withdrawal among pre-school-aged children; and by adolescence children begin to display a similar symptom picture to that of adults, but with more pronounced effects in the areas of personality development, identity formation and anti-social behaviour (for example, Thomas & Lau, 2001). Some children have demonstrated remarkable resilience, with morbidity rates becoming comparable to general child community rates within a few years of settlement (Krupinski & Burrows, 1986; Becker et al., 1999; ServanSchreiber, Le Lin & Birmaher, 1998), while other cohorts of young refugees continue to suffer elevated levels of psychological disorders for many years following migration (Sack, Him & Dickason, 1999; Thomas & Lau, 2001). Similar to the adult studies, post-migration circumstances strongly influence the children’s recovery to mental health: variables implicated include exposure to violence post-migration (Sinnerbrink et al., 1997), lack of family cohesion (Thomas & Lau, 2001), a stressful settlement environment (Ajdukovic & Ajdukovic, 1993), low socio-economic status (Howard & Hodes, 2000), absence of peer and other support (Jupp & Luckey, 1990), parental, particularly paternal unemployment, school and language problems, and discrimination (Hyman, Vu & Beiser 2000). An Australian survey of children of Cambodian, Vietnamese and Spanish-speaking backgrounds indicated that they experienced school-related problems including gaps in their education due to displacement, and discrimination and bullying from other students (Sozomenou et al., 2000). Parental mental health has been found to affect levels of disorder in children. Recent research has confirmed the observation in relation to psychological disorders in World War II refugees that trauma can be transmitted intergenerationally (Yehuda et al., 1998). Parental posttraumatic stress disorder among refugees has been found to increase the risk of post-traumatic stress disorder in the sufferers’ children, independently of other environmental influences (Sack et al., 1994). The mechanisms involved are uncertain, but may include the parents’ compromised ability to care for their children, learning and sensitisation, and genetic factors (Hodes, 2000). More generally, maternal adaptation difficulties among asylum seekers has been found to be correlated with children’s stress levels (Ajdukovic & Ajdukovic, 1993), and in a study of Iranian refugee children, maternal mental health predicted children’s psychological well-being (Almqvist & Broberg, 1999). Over the past decade, individuals and families seeking asylum in Australia have been subject to Federal Government policies that have made their postCultural considerations in understanding parents with mental illness and their children

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arrival experiences quite distinct from refugees selected ‘off-shore’ as part of the Refugee and Humanitarian program. A discussion of Australia’s policies in relation to asylum seekers is beyond the scope of this chapter; however, there is now convincing evidence that extended immigration detention is psychologically harmful for parents and their children (see submissions to the Human Rights and Equal Opportunity Commission, 2003); that denying some asylum seekers in the community access to basic health care and material support (Briton, 2002; Taylor, 2000) exacerbates pre-existing psychological disorders; and that the uncertainties about the future created by Temporary Protection Visas and the prohibition these visas carry on family reunion also creates distress and sometimes precipitates mental illness in parents and, consequently, also in more vulnerable children (Kaplan, 2003). Further correlates of distress among asylum seekers include fears of repatriation, separation from and concerns about family members who haven’t found refuge, difficulty with the refugee determination process, unemployment, and inadequate access to health care and material assistance (Steel & Silove, 2000). The children in Vignette 2 have been subject to a set of cumulative stressors: a range of pre-migration traumas and losses associated with civil war, displacement and migration, extended detention, a period of separation from the remaining parent, and then a variety of acculturative stressors. This set of adverse experiences is not atypical for children of asylum seekers. There is a real danger that these children will not follow a path towards recovery and successful adaptation that has been until recently the hallmark of the lives of the majority of refugee children who have found refuge in Australia. Research of the kind briefly reviewed in this section is invaluable for the purposes of service and policy development. For the clinician, information about features of a cultural group cannot take the place of the culturally sensitive assessment of the individual; such knowledge, however, alerts us to possibilities that need to be examined.

Conclusions: with a note on cultural considerations in clinical practice and service development If the fact that mainstream psychiatric services are under-utilised by cultural minorities is set alongside the reality that Australian-born children still fail to receive from those services anything like what is required to meet their needs, then it is not surprising that the problems experienced by children of mentally ill immigrants and refugees are often invisible. In order to address the unmet need among immigrant and refugee children, coordinated joint programs that are starting to be developed across child, adolescent and adult services, and other family and protective services, must be integrated with the

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approaches that have begun to increase access of cultural minorities to mental health services. Successful initiatives for minority group children and their mentally ill parents are occurring at a local level. One such initiative, with which the authors are familiar, demonstrates some principles that have wider relevance in the successful engagement of cultural minorities which have low access to mainstream services. The project’s success is particularly instructive for those of us who are veterans of poorly attended mental health ‘information evenings’ for ethnic minorities, and in light of findings indicating the extent to which these cultural groups find mental health, family and protective services alienating (Sozomenou et al., 2000). The Vietnamese Mental Health Groups Project (‘the project’) comprises a women’s group, a men’s group and a children of parents with a mental illness group. The adult groups receive referrals from clinical and non-clinical mental health and support services for Vietnamese–Australian people with a mental illness who are living in an area covered by five western suburban municipalities of Melbourne. In June 2003, about ten to fifteen people attended each of the adult groups, and about ten children attended the homework group. Described in a published evaluation (Western Region Health Centre and Doutta Galla Community Health Service 2001), the project has succeeded, despite very modest funding, in creating well-attended groups for mentally ill people, including parents and their children. A combination of planning and implementation methods appears to have contributed to the project’s success. The development of the groups was informed by a local needs survey and data indicating under-utilisation of mental health services by the Vietnamese-born community. The men’s and women’s groups grew out of recreational activities, and were based outside the mental health service. Vietnamese bilingual workers employed by clinical and disability support services fostered the growth of the groups. The bilingual workers were part of broader networks at local, regional and state levels involving ethno-specific, mental health and mainstream agencies, and these organisations provided peer support, training and joint planning. The project has been sensitive to how families viewed the participants’ involvement, and conducts a number of activities—excursions, group dinners, an annual camp, celebrations of Vietnamese New Year—which include members of the groups and their families. It emerged out of these group activities that parents and children regarded assistance with the children’s school work as a priority. The idea of providing help with homework arose from children being offered informal tuition with school work at a camp. A homework group was formed with volunteer university student tutors. The bilingual workers found that during the tutorials children Cultural considerations in understanding parents with mental illness and their children

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began to talk about home life and some of the challenges they experienced as a consequence of having a mentally ill parent. The workers’ view is that if these issues had been addressed directly with the children in individual or family interviews, these experiences would often not have been spoken about. A number of themes have run through the children’s views on their experiences (Dinh, 2003). Several children found that having a mentally ill parent affected their relationship with their peers; some said they were teased and bullied at school because they had a mentally ill parent. Children often feared that mental illness would cause their parents to separate. They worried about the parent’s health, whether they would need hospitalisation again, and some expressed distress regarding previous experiences with involuntary admission. They worried about family financial concerns. They said that they sometimes could not turn to the ill parent for assistance with daily problems, such as those arising at school. The adult groups also initially addressed mental health issues only incidentally; once established, however, they have run workshops within group time to examine specific concerns related to psychiatric illness, such as understanding mental disorders, gambling, medication and family violence. The project differs from some earlier attempts to engage families, including the children of psychiatrically disabled members of ethnic minorities, in that it sets the issue of mental illness in a broader, culturally sanctioned context that is naturally inclusive of the family. Issues regarding mental health emerge in a setting not devoted solely to that purpose. The groups are facilitated by bilingual workers who are regarded as both trusted members of the group and members of the broader cultural community. Such initiatives remain exceptions to what the Human Rights and Equal Opportunity Commission’s (1993) ‘Burdekin Report’ found 10 years ago to be the failure of mainstream services to address the needs of children with mentally ill parents. In this chapter we have suggested that mentally ill immigrant and refugee parents and their children are embedded in a complex set of cultural transactions in relation to the host culture generally and with mental health services in particular. It has been underscored that without a deliberate policy of ensuring the centrality of children’s well-being whenever mentally ill parents are assessed, cultural distance between the clinician and the client’s family is likely to make immigrant and refugee children even more invisible than Australian-born children. This chapter has described a clinical approach involving the identification and understanding of cultural variables with the objective that cultural distance does not become a barrier to addressing the needs of children of mentally ill parents. Cultural variables, it has been suggested, are present and need to be understood at multiple levels:

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•

How the parent’s mental illness is culturally shaped, both with regard to symptom presentation and the way in which the disorder is experienced and understood. The clinician needs to ask how his/her own cultural assumptions and the client’s culturally based expectations and idioms of expression come together to define the ‘presenting problem’. Mental status assessment to an extent has to be relearned whenever conducted with cultural groups with which the clinician is unfamiliar.

•

The nature of the family’s response to the mentally ill parent. An approach to families’ understanding of mental illness in terms of ‘explanatory models’ has been described. The explanatory models adopted by individual family members have implications for how the parent is responded to, the degree to which the parent is treated as ill, the consequences of the illness in terms of parenting responsibilities, and the kinds of treatment sought. Children are intimately caught up in these processes, their understanding of what is occurring being shaped by what they observe and are told, their level of cognitive and emotional maturity, and the competing influences of the family and host culture’s belief systems in relation to mental illness. If the mentally ill parent’s beliefs are egocentric or delusional, then these views become another influence which the child has to reconcile. The presence of other adults fulfilling a parental role is crucial in regard to the extent to which the child is influenced by the ill parent’s beliefs.

•

Cultural influences on children’s vulnerability. Children of immigrant and refugee families are likely to be struggling with premigration and settlement experiences and acculturative stressors simultaneously with the difficulties associated with having a mentally ill parent. A proportion of refugee children, owing to premigration trauma, will have psychological disorders of their own, which may not be recognised by the family. Cultural minority status increases the probability that young children, and certainly children in their adolescence, may find themselves fulfilling multiple, often conflicting, roles. They may be required to support the ill parent and take over a number of adult responsibilities (looking after younger children, negotiating with authorities, acting as family spokesperson), and yet fulfil pre-existing expectations with respect to deference to parental authority and commitment to scholastic achievement.

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The range of possible influences on the well-being of immigrant and refugee children of mentally ill parents makes it self-evident that an accurate assessment of children will usually require seeing them both together with and separately from their family. Parents’ mental illness may affect their ability to accurately assess and describe their child’s psychological state. It is important to allow for the possibility that culturally prescribed norms in relation to suppression of feeling and deference to the parental point of view may stand in the way of an exploration of the child’s experiences. In improving the mental health service we deliver to minority group families, service reform and the individual clinician’s cultural competence are interdependent. Competent clinicians cannot reach cultural minority group families from a service that is insensitive to these families’ needs; and service reform which doesn’t translate into material changes in what occurs between clinicians and their culturally diverse clients is little but window dressing. * The authors would like to acknowledge the assistance of their colleagues Thuy Dinh, Moisis Moisis, Kathy Patsolaridis, Julie Najdanovski and Laura van Winden.

References Ajdukovic, M. & Ajdukovic, D. (1993) ‘Psychological well being of refugee children’, Child Abuse and Neglect, 17, pp. 843–54, cited in Thomas & Lau, 2001. Almqvist, K. & Broberg, A.G. (1999) ‘Mental health and social adjustment in young refugee children 3.5 years after their arrival in Sweden’, Journal of the American Academy of Child and Adolescent Psychiatry, 38, pp. 723–30. Andary, L., Stolk, Y. & Klimidis, S. (2003) Assessing Mental Health Across Cultures, Queensland: Australian Academic Press. Becker, D.F., Weine, S.M., Vojvoda, D. & McGlashan, T.H. (1999) ‘Case series: PTSD symptoms in adolescent survivors of “ethnic cleansing”. Results from a 1-year follow-up study’, Journal of American Academy of Child and Adolescent Psychiatry, 38, pp. 775–81. Beiser, M. (1988) ‘Influences of time, ethnicity and attachment on depression in South East Asian refugees’, American Journal of Psychiatry, 145, pp. 46–51. Bontempo, R. (1993) ‘Translation fidelity of psychological scales: An item response theory analysis of an individualism-collectivism scale’, Journal of Cross-Cultural Psychology, 24, pp. 149–66. 186

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Briton, C. (2002) ‘Asylum seeker children in the community outside of the “social safety net” available to Australian residents’, unpublished Australian Red Cross document. Carlson, E.B & Rosser-Hogan, R. (1993) ‘Mental health status of Cambodian refugees ten years after leaving their homes’, American Journal of Orthopsychiatry, 63, pp. 223–31. Chung, R.C. & Kagawa-Singer, M. (1993) ‘Predictors of psychological distress among Southeast Asian refugees’, Social Science and Medicine, 36, pp. 631–39. Dinh, T. (Bilingual Case Manager) (2003) Personal communication. Flaherty, J.A., Gavira, M., Pathak, D., Mitchell, T., Wintrob, R., Richman, J.A. et al. (1988) ‘Developing instruments for cross-cultural psychiatric research’, Journal of Nervous and Mental Disease, 176, pp. 257–63. Giddens, A. (1971) Capitalism and Modern Social Theory, Cambridge: Cambridge University Press, pp. 141–44. Hauff, E. & Vaglum, P. (1994) ‘Chronic post traumatic stress disorder in Vietnamese refugees: A prospective community study of prevalence, course, psychopathology and stressors’, Journal of Nervous and Mental Disease, 182, pp. 85–90. Hauff, E. & Vaglum, P. (1995) ‘Organised violence and the stress of exile. Predictors of mental health in a community cohort of Vietnamese refugees three years after settlement’, British Journal of Psychiatry, 166, pp. 360–67. Hodes, M. (2000) ‘Psychologically distressed refugee children in the United Kingdom’, Child Psychology and Psychiatry Review, 5, pp. 57–68. Howard, M. & Hodes, M. (2000) ‘Psychopathology, adversity, and service utilization of young refugees’, Journal of American Academy of Child and Adolescent Psychiatry, 39, pp. 368–77. Hubbard, J., Realmuto, G.M., Northwood, A.K. & Masten, A.S. (1995) ‘Comorbidity of psychiatric diagnoses with post-traumtic stress disorder in survivors of childhood trauma’, Journal of American Academy of Child and Adolescent Psychiatry, 3, pp. 1167–73. Human Rights and Equal Opportunity Commission (1993) Report of the National Inquiry into the Human Rights of People with Mental Illness, Canberra: Australian Government Publishing Service. Human Rights and Equal Opportunity Commission, submissions made to the ‘National Inquiry into Children in Immigration Detention’ sourced from http://www.hreoc.gov.au/human_rights/children_detention/ submissions/index.html#psych (August, 2003). Cultural considerations in understanding parents with mental illness and their children

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Hyman, I., Vu, N. & Beiser, M. (2000) ‘Post-migration stresses among Southeast Asian refugee youth in Canada: A research note’, Journal of Comparative Family Studies, 31, pp. 281–93, cited in Thomas & Lau, 2001. Jenkins, J.H., Kleinman, A. & Good, B.J. (1991) ‘Cross-cultural studies of depression’, in J. Becker & A. Kleinman (eds) Psychosocial Aspects of Depression, New Jersey: Lawrence Erlbaum. Jupp, J.J. & Luckey, J. (1990) ‘Educational experiences in Australia of IndoChinese adolescent refugees’, International Journal of Mental Health, 18, pp. 78–91. Kaplan, I., Direct Services Coordinator of the Victorian Foundation for Survivors of Torture, Parkville, Victoria (2003) Personal communication. Kleinman, A. (1980) Patients and Healers in the Context of Culture: An exploration of the borderland between anthropology, medicine and psychiatry, Berkeley: University of California Press. Kleinman, A. (1986) Social Origins of Distress and Disease: Depression, neurasthenia and pain in modern China, New Haven: Yale University Press. Klimidis, S., McKenzie, D.P., Lewis, J. & Minas, I.H (2002) ‘Continuity of contact with psychiatric services: Immigrant and Australian-born patients’, Social Psychiatry and Psychiatric Epidemiology, 35, pp. 554–63. Kocijan-Hercigonja, D., Rijavec, M. & Hercigonja, V. (1998) ‘Mental health condition and adjustment of refugee and displaced children in a war area’, Psychiatria Danubina, 10, pp. 23–29, cited in Thomas & Lau, 2001. Kortmann, F. (1987) ‘Problems in communication in transcultural psychiatry: The self-reporting questionnaire in Ethiopia’, Acta Psychiatrica Scandinavia, 75, pp. 563–70. Krupinski, J. & Burrows, G. (eds) (1986) The Price of Freedom: Young Indochinese refugees in Australia, New South Wales: Pergamon Press. Lambert, T. & Minas, I.H. (1998) ‘Transcultural psychopharmacology and pharmacotherapy’, Australasian Psychiatry, 6, pp. 61–64. Lin, K.M., Smith, M.W. & Ortiz, V.V. (2001) ‘Culture and psychopharmacology’, Psychiatric Clinics of North America, 24, pp. 523–38. Rees, S. (2003) ‘Prolonging trauma in the lucky country: The experiences of East Timorese women asylum seekers residing in the Australian 188

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community’, in D. Barnes (ed.) Asylum Seekers and Refugees in Australia: Issues of mental health and wellbeing, Sydney: Transcultural Mental Health Centre. Sack, W.H., Him, C. & Dickason, D. (1999) ‘Twelve year follow-up study of Khmer youths who suffered massive war trauma as children’, Journal of American Academy of Child and Adolescent Psychiatry, 38, pp. 1173–79. Sack, W.H., McSharry, S., Clarke, G.N., Kinney, R., Seeley, J. & Lewinsohn, P. (1994) ‘The Khmer Adolescent project: 1. Epidemiologic findings in two generations of Cambodian refugees’, Journal of Nervous and Mental Disease, 182, pp. 387–95. Servan-Schreiber, D., Le Lin, B. & Birmaher, B. (1998) ‘Prevalence of post traumatic stress disorder and major depressive disorder in Tibetan refugee children’, Journal of American Academy of Child and Adolescent Psychiatry, 37, pp. 874–79. Silove, D., Steel, Z. & Watters, C. (2000) ‘Policies of deterrence and the mental health of asylum seekers’, Journal of the American Medical Association, 284, pp. 604–11. Sinnerbrink, I., Silove, D., Field, A., Steel, Z. & Manicavasagar, V. (1997) ‘Compounding of pre-migration trauma and post-migration stress in asylum seekers’, The Journal of Psychology, 131, pp. 463–70. Slone, M., Adiri, M. & Arian, A. (1998) ‘Adverse political events and psychological adjustment: Two cross cultural studies’, Journal of American Academy of Child and Adolescent Psychiatry, 37, pp. 1058–69. Sozomenou, A., Cassaniti, M., Mitchell, P., Barnett, B., Coello, M., Sneddon, A., Webber, M., Chuong, J. & Malak, A. (2000) ‘Who’s caring for whom? Living with parents with mental health problems’, in M. Bashir & D. Bennett (eds) Deeper Dimensions: Culture, youth and mental health, Sydney: New South Wales Transcultural Mental Health Centre, p. 104. Steel, Z. & Silove, D. (2000) ‘The psychosocial cost of seeking and granting asylum’, in A. Shalev, R. Yehuda & A.C. McFarlane (eds) International Handbook of Human Response to Trauma, New York: Kluwer Academic/Plenum Publishers. Stolk, Y. (1996) Access to Psychiatric Services by People of Non-English Speaking Background in the Western Region of Melbourne, vols 1 & 2, Melbourne: Victorian Transcultural Psychiatry Unit.

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Stolk, Y. (2002) ‘Development and evaluation of a training program in crosscultural psychiatric assessment’, doctoral dissertation in preparation; cited in L. Andary, Y. Stolk & S. Klimidis (2003). Taylor, S. (2000) ‘Do on-shore asylum seekers have economic and social rights?’ Melbourne Journal of International Law, 1, pp. 70–97. Thomas, T. & Lau, W. (2001) Psychological Well Being of Child and Adolescent Refugee and Asylum Seekers: Overview of major research findings of the past ten years, sourced from www.humanrights.gov.au/ human_rights/children_detention/psy_review.html (August 2003). Tousignant, M., Habimana, E., Biron, C., Malo, C., Sidoli-LeBlanc, E. & Bendris, N. (1999) ‘The Quebec adolescent refugee project: Psychopathology and family variables in a sample from 35 nations’, Journal of the American Academy of Child and Adolescent Psychiatry, 38, pp. 1426–32. Westermeyer, J. (1988) ‘DSM-III psychiatric disorders among Hmong refugees in the United States: A point prevalence study’, American Journal of Psychiatry 145, pp. 197–202. Westermeyer, J., Neider, J. & Callies, A. (1989) ‘Psychosocial adjustment of Hmong refugees during their first decade in the United States. A longitudinal study’, Journal of Nervous and Mental Disease, 177, pp. 132–39. Western Region Health Centre and Doutta Galla Community Health Service (2001) ‘I no longer feel alone’. A report on an evaluation of the Vietnamese Mental Health Groups Project: A culturally sensitive initiative. Yehuda, R., Schmeidler, J., Wainberg, M., Binder-Brynes, K. & Duvdevani, T. (1998) ‘Vulnerability to post traumatic stress disorder in adult offspring of holocaust survivors’, American Journal of Psychiatry, 155, pp. 1163–71.

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You’re not alone— peer support

Peer support activities for children and young people

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14

V I C K I C O W L I N G , R O S E C U F F, JENNIFER LUNTZ and K AT H A R I N A V E R S C H A R E N

‘Groups have the advantage of being a kind of insulated little world in which present behaviour can be experienced and new behaviour tried out . . . Group work is an ideal setting for children who need to practice contact skills. It is natural for most children to seek out other children. The group process is the most valuable aspect of group work with children. How they experience each other and how they react and relate to each other in the group openly displays their interpersonal relations in general. The group is a place for the child to become aware of how she interacts with other children, to learn to take responsibility for what she does and to experiment with new behaviours. In addition, every child needs connection with other children, to know that others have similar feelings and similar problems . . . Giving children the opportunity to play games with each other gives them fundamental experiences in interrelating. Sometimes the group as a whole can play these games and sometimes the group can be divided into twos and threes . . . It is essential that the group be a place that children can trust, and in which nothing hurtful to any child will be passed over by the group facilitator . . . Group sessions ought to be enjoyable experiences. A satisfactory group session is one in which each child feels interested, interesting, safe and accepted. The child feels freer to reveal herself and her emotions, thoughts and opinions. As she knows she will find support and connection with the facilitator and the other children, she will grow stronger within herself . . .’ (OAKLANDER, 1988)

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CHAPTER

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As highlighted by the above quote, children’s groups are therapeutically potent and are often used to help children adapt to situations beyond their control. This chapter discusses the use of such groups to assist children and adolescents who have a parent with a mental illness. Marsh (1996), the Australian Infant, Child, Adolescent and Family Mental Health Association (2001), and the Royal College of Psychiatrists (2002) have all recommended peer support groups to provide information about mental illness, develop skills to cope with that illness and provide support by being with other children who are struggling with similar issues. Cuff & Pietsch (1997) note the value of peer support groups as a mental health promotion tool. They describe children in upper primary school and adolescence as experiencing tremendous gains in emotional and social development and, in particular, stress the increasing independence from parents and other adults, accompanied by a parallel development of relationships with peers. ‘Many of the changes in social behaviour at this age go hand in hand with the child’s progress in understanding him/herself and others. For example: the ability to take the perspective of another person; the ability to relate empathically to another person’s emotions; and the ability to evaluate the morality of other people and oneself.’ (p. 12) Group activities also help in developing resilience. Resilience is the capacity to ‘deal with life changes’, or individual variations, in response to risk. Resilience is not a fixed attribute of the individual, but may vary as a response to adversity if an individual’s circumstances change (Rutter, 1985, 1987). Protective factors and interactive processes in a child’s life enhance her/his capacity for resilience in response to adverse events. These may include the development of self-esteem, having a range of opportunities in which to experience life, having experiences outside the home which compensate for difficulties at home, the availability of personal bonds and relationships, and the development of coping skills (Rutter, 1985, p. 608). This chapter briefly describes peer support programs being run overseas and in Australia before describing two such programs being run in the outer eastern region of Melbourne. Two different types of program for children of parents with mental illness have been running in two states in the United States since the late 1980s. In Michigan, the focus has been on mental health promotion, and in Ohio mental illness prevention (Luntz, 1995). In Michigan, the groups are grounded in the observation that children who are naturally resilient cope effectively with the circumstances of having a parent with mental illness and are also less likely to develop a mental illness themselves (Cohler, 1983;

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Cohler & Musick 1984; Rutter & Quinton, 1984; Garmezy, 1984). Resilience is considered to include: • above-average intelligence • good motor coordination • a consistent, supportive caring adult somewhere in the child’s life who provides an alternative role model for behaviour and understanding reality • capacity of the child to distance her/himself from the parent’s mental illness and an interest in the parent’s symptoms and treatment • a good start in life with consistent, appropriate, loving parenting for at least 6 months and preferably up to 2 years • personality traits of confidence, sociability, non-submissiveness, persistence, flexibility and a healthy scepticism (Anthony, 1974; Schachnow, 1987). The Michigan groups aim to develop resilience by providing children with: • a safe environment in which to learn how to make friends • the opportunity to form a relationship with an adult who helps the child distance him/herself from the parent’s delusional view of the world • advocacy on the child’s behalf with school, other agencies and possibly the parent • improvement in the parent/child relationship • an understanding of the parent’s mental illness • a range of recreational activities. The Ohio groups focus on mental illness prevention in both the child and parent. These groups are based on three assumptions: • Children with a mentally ill parent are often isolated, with few opportunities to learn how to form friendships. They need to be provided with a safe environment in order to facilitate friendship development. • If children have an understanding of their parents’ mental illness and are able to recognise the early warning signs, they may be able to encourage their parents’ medical compliance and thus help reduce the number of full-blown psychotic episodes experienced by their parents. • The children are easily accessible because their parents are clients of the mental health system. Both the Michigan and Ohio groups have been monitored for almost two decades, with impressive results (Luntz, 1993, 1995). The Michigan programs are evaluated by administering the following tests prior to the child commencing the group and again once he/she has completed the program: Peer support activities for children and young people

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• Pearlin Coping Skills to ascertain the parent(s) functioning • Rosenberg Self-esteem Inventory to ascertain parental level of self-esteem • CAAP scale to check the child adjustment profile • Piers-Harris Children’s Self Concept Scale for the child’s level of self-esteem • Wheeler and Ladd Scale to ascertain the child’s self-efficacy social interaction with peers • Scales to ascertain changes in the child’s behaviour and the family environment. The Positive Connections Program, run in Toledo, Ohio for children aged 8–13 years, was recently reported in the literature. Three components are emphasised: education, support and mentoring. Program evaluation conducted with eleven children and their parents, using the Self-Esteem Index (SEI) and the Family Assessment Measure (FAM), showed positive changes (Orel, Groves & Shannon, 2003). SMILES (Simplifying Mental Illness + Life Enhancement Skills) is a group program initiative in New South Wales for children aged 8–16 years who have a parent or sibling with a mental health problem. Twenty-five children participated in three programs described by Pitman & Matthey (in-press). The program aims to provide age-appropriate education about mental illness; enhance life skills to improve the capacity to cope more effectively and increase resilience; improve self-expression and creativity; increase selfesteem; and reduce feelings of isolation. The aims are achieved through education about mental illness, communication exercises, problem solving, artwork, music, relaxation exercises and peer support. Outcomes of the 3-day program were measured using two questionnaires constructed for the program—a knowledge measure and a life skills measure, which were both rated by the children at the beginning and end of the program. The knowledge questionnaire examined the children’s knowledge of mental health problems, and the life skills questionnaire examined the children’s self reports concerning ability to ‘solve problems’, and to ‘feel good about myself’. Significant improvement was found for eight of the knowledge questions, and for all of the life skills questions. In addition to the outcomes measured and reported above, an important outcome emphasised in other reports of peer support programs for children and young people is finding out they are not alone in their experience of living with a parent with mental illness. Children generally do not speak with friends or relatives about their family problems, and avoid dealing openly with their feelings about having a parent with mental illness (Buckwalter, Kerfoot & Stolley, 1988), so the opportunity to hear others, to be listened to and understood, is a positive experience for them. 196

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In reporting on a brief focus group with six children aged 11–15 years having parents with affective illnesses, Darley et al. (1997) noted that the children attended the groups consistently, which indicated a sense of comfort and cohesion among group members, and an identification with one another in spite of the relative brevity of the group experience (4 weeks). ‘It was as if the group represented a process of normalisation, providing the children with a much needed opportunity to hear others echo their own experiences and validate their perceptions’ (1997, p. 102). Champs (Children And Mentally Ill Parents) camps have been provided periodically in Victoria since 1996 (Cuff & Wragg, 1999). Vicky Robinson continues to attend the camps, and speaks with children and young people about her own experience in growing up with a mother who suffered from schizophrenia. As Vicky notes: ‘. . . a main benefit that I saw Champs (camps) have on the children, which I can personally relate to, was that they were able to see that they were not alone’ (Robinson, 1999). This is supported by Andrea, a three times Champs camp participant: ‘On the camps we got the chance to talk about our experiences and stuff … To be honest, it was nice to know that there were others who were in our shoes, as it were. But don’t tell anyone I said that’ (Cuff & Wragg, 1999). The needs of forty young people identified as carers of a family member with mental illness have been reported by Aldridge & Becker (2003). Where the young people had the opportunity to attend young carer project sessions, they formed important friendships with other young people and with the project workers. ‘. . . it did make a difference meeting others who’d had the same experiences . . . going to the young carers project was definitely (good) because I felt I weren’t the only one this was happening to.’ (DEBBIE,

AGED

18,

IN

ALDRIDGE & BECKER, 2003, P. 91)

‘In child/child interactions, children meet on relatively equal ground, and each member of the group can contribute to group decisions and activities’ (Cuff & Pietsch, 1997, p. 13). This is one important characteristic of the peer support programs for children and young people, and is described in the two sections that follow—first, the Champs activities for children aged 8–12 years, then the PATS program, for young people aged 13–18 years. Children and young people also learn that they are not alone, they learn how their parents’ mental illness may affect behaviour, and also learn to feel comfortable talking with others about problems at home.

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Champs groups ROSE CUFF

‘In North American Indian culture, there is a belief that a person’s inherent … [challenges are] … their gift to the tribe. When they learn to deal with and overcome their [challenges], they then become a teacher to the tribe on how to master their problems. The one who has suffered the most with a particular … [challenge] ... is the one who knows the most about overcoming it.’ (JOUDRY, 2001)

An early venture in Australia for children of parents with mental illness was the Peer Support Program (see Cuff & Pietsch, 1997). Between 1995 and 1997, funding provided by the Federal Government was used to pilot three alternative models of peer support groups for children aged 9–13 years. The first two occurred over 5 days in the school holidays, with ten weekly sessions to follow. The third was a 3-day camp (see Cuff & Wragg, 1999). For the children, highlights of these experiences included sharing observations about themselves and their families. This enabled them to develop a strong bond and clear recognition of what they had in common with each other as they each realised they were not the only one whose parent had a mental illness (Cuff & Pietsch, 1997). The activities targeted children primarily in the age group 8–12 years, a time when peer relationships and seeking approval from peers becomes increasingly important. The experience helps the children to separate from their family and find alternative places in which they can feel safe, and this can greatly assist children. In addition, shared experiences contribute to a sense of personal power. At the conclusion of the funding period, the Eastern Health Adult Mental Health Program took up the initiative and implemented Champs groups in the eastern region of Melbourne in 1999. The groups occur in the context of broader service provision for which the project worker collaborates with a diverse range of individuals and organisations to offer interventions to families with a parent who has a mental illness. Components of the Eastern Health project include: • the Eastern Network for Family Mental Health • clinical consultation service • group programs for parents • children’s programs • resource development.

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The following sectors, groups and individuals participate to make the project a success: psychiatric disability support services, child and family support services, mental health (adult and child and adolescent) services, supported accommodation assistance programs, local councils, consumers, carers, adult offspring and service organisations such as Rotary. Three types of children’s program have been developed to provide psychoeducation, recreation and respite, utilising a model of peer support. These are: 1. School holiday programs—these run over four consecutive days and developed after consultation with parents who identified the school holidays as being peak times of stress. A maximum of twelve children attend each program. 2. After-school programs—these have been offered on a weekly basis as a closed group and as an open fortnightly group. The latter is currently operating as a result of parents and children identifying a need for a continuing group from which children could derive a sense of belonging, as well as opportunities for connecting with other children and joining in community activities. 3. Camps—since 1997 fourteen camps have been offered, involving over 120 children. Many children have attended more than one camp, which enables them to act as ‘buddies’ for younger children attending camp for the first time. As part of the overall program there are also reunions for program participants, Family Fun days and a newsletter called The Champs Chronicle, which is produced by a parent consumer of mental health services. Champs camp leaders are volunteers who come from diverse backgrounds. Training and supervision for group facilitators and camp leaders are essential. Key areas addressed in training include: • providing a structured program with flexibility • strict safety/legal protocols • supervision and debriefing • follow-up • opportunity for facilitators to identify topics raised by children which cause them discomfort, or with which they feel confident and at ease. Qualitative evaluation has been through questionnaires to parents/guardians, children and group facilitators. There have also been group discussions with children after the program. Feedback from children included the following responses:

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Questions What did you learn about having a parent with a mental illness? • I’m not the only one • That there’s more people than you think and there’s different illnesses • That it will be okay • How to cope • That lots of other people have the same problem • That your family is different to other families who don’t have a mental illness What did you find useful? • Making friends • Learning new things like [making] masks • Making noise and not getting yelled at • A lot, I learned a really lot • Talking to my mum • I found out how much I mean to my mum • I can climb walls • I can hold a frog Feedback from parents about their children’s participation over the period 2001–2003 included: •

•

She said she felt free for the first time in her life to talk about her experiences. It has been a big relief for him and for me to know there are others out there. It has given him a new way of thinking.

•

She knows now that although I have an illness I am a normal person.

•

The following points were also included in parents’ feedback: • •

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Parents’ satisfaction with the program was reported as very high. Activities such as interviewing, or being a ‘detective’ facilitated greater discussion about mental illness/mental health and more ‘personal’ issues, and how to get help and support. In this activity children talked about themselves to each other, and on their return home asked questions of their parents. >>

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•

It is very important to meet other children in similar circumstances.

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It is a chance for their children to make positive friendships.

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Parents would like more activities and more discussion on mental health issues.

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Participation in the groups helps increase the child’s confidence.

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This increase in confidence encourages the child to feel more comfortable about speaking with his/her teacher.

Facilitator’s reflection As someone who has participated as a facilitator in all these programs over the past 7 years, I am struck by the extraordinary courage, strength and wisdom of many of these children, while at the same time I am saddened by the raw reality which many of them face on a day-to-day basis. For those living in the most disadvantaged situations, the simplest ‘intervention’ is often the most powerful. I have recollections from the Champs camps of observing quiet moments when one child plaited or beaded the hair of another, or played out characters in their lives in drama ‘games’. I recall outings to indoor rock climbing centres when the heroine was the smallest child who mastered the first rung, and other occasions when a ‘difficult’ adolescent who shared his story and cried was comforted by another ‘difficult’ adolescent. The individual journeys for many who participate in peer support programs such as Champs can be small but significant, or they may be the beginning of a greater journey. Many children begin to question seriously for the first time why their parent ‘acts’ in the way they do, or why things are the way they are. This can be confronting for parents and can require gentle support for such important conversations to continue taking place. Meeting other children and sharing stories for the first time can unlock a veritable flood of emotions, and needs careful monitoring. The sense of relief expressed by the majority of children when they recognise that many have had similar experiences, and that they really DO know how it is for them, is huge. And the opportunity to remain in contact with those peers is an important component of such programs.

Paying Attention to Self (PATS)—the power of peer support K AT H A R I N A V E R S C H A R E N

The Centre for Adolescent Health, Royal Children’s Hospital, Melbourne, established the Paying Attention to Self (PATS) program in 1997 (Rimington et al., 1999). The program was developed in response to an identified lack of Peer support activities for children and young people

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support and resources for adolescents whose parents have mental health issues. In 2002, the beyondblue National Depression Initiative, VicHealth and the State Department of Human Services provided the funds to deliver PATS programs from five sites across Victoria, in rural, inner-city and suburban locations. These are the Centre for Adolescent Health in Parkville, sites in inner South Melbourne, Youth Services/Shire of Yarra Ranges Lilydale, Wimmera Uniting Care Horsham, and the Goulburn Valley Child and Adolescent Mental Health Service in Shepparton.

PATS model PATS targets young people aged 12–18 years who have a parent with a mental illness such as schizophrenia, bipolar disorder or depression. It aims to provide the young people with the opportunity to share their experiences and be supported by other young people in similar situations. Activities increase the knowledge of mental health and illness, improve their help-seeking behaviour and coping strategies, and their sense of connection to peers, family and community. The focus is on healthy thinking and healthy coping strategies. Activities include discussions, games, role-plays, art therapy, guest speakers and social outings. Each PATS group comprises between six and eight participants who meet weekly for 8 weeks. They are facilitated by a peer leader (a young person whose parent has a mental illness) and a service provider. Topics covered include: • understanding their parent’s illness • improving their relationship with their parent • communication and problem-solving skills • dealing with the stigma associated with mental health • developing strategies to cope with their parent’s condition and to stay mentally healthy themselves. In order to prepare young people for the role of peer leader/facilitator, the Centre for Adolescent Health conducts bi-annual, 2-day training courses. Training covers peer support, mental illness, communication skills, group dynamics, leadership skills, public speaking and activity planning. Referrals to PATS come from service providers, parents or young people themselves. The program coordinator visits the family and discusses the program and the young person’s current needs. This meeting is imperative for engaging with the young person. It provides the opportunity for parents to

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raise anxieties and concerns. It also enables respite and support options to be put in place, and initiates referrals to other services if required. The first week of the PATS group involves getting to know one another and developing trust in the group process and in each other. Rules are formulated, which encompass nurturing, respect, meeting challenges, risk taking and having fun. Each participant is encouraged to contribute at a level at which they feel comfortable. The peer facilitator describes her/his experience of being in a PATS group, and what he/she has learnt, and facilitates group discussion about what this particular group might want to get out of the program. Topics to be covered over the following 7 weeks are presented with the aim of ensuring that participants are better equipped to cope with the challenges with which their situation presents them. The young people are encouraged to express their feelings, give advice, share opinions and discuss issues which concern them. Topics such as ‘What is mental illness?’ and the stigma surrounding it are not raised until group trust is well established. Once this trust has been achieved participants are able to talk about some troubling feelings. ‘I just thought my dad was a psycho, I hated being around him, his split personality made me think I was talking to different people. One of the other young people in the PATS group told me I had it wrong. I really didn’t know what was wrong or right anymore. PATS explained my dad’s symptoms and now I understand why he is strange sometimes, I can deal with that, now we talk.’ Over time, the young people start building friendships within the group, they talk about feelings rather than issues, and embrace the support offered by the group and facilitators. Art therapy is introduced as an additional medium through which they can express their feelings about living with someone who has a mental illness. There is often intense discussion about what it is like to hide feelings and present a false self to friends, associates and family. The importance of looking after self is stressed. ‘I have to stay home from school sometimes to look after mum and my little sister. My friends think I’m slack and I argue with Mum because I want to do other things. It’s nice to know I don’t have to feel guilty or ashamed when I want to do things for myself.’ Later sessions address relationships within the family, friends and wider community, support networks and how to look after oneself. While each topic can be discussed separately, many of the issues overlap; for example,

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relationships, conflict and looking after self often go hand-in-hand. At times, addressing specific issues may be very difficult if what is happening at home is particularly challenging. If a parent is very unwell the young person may take on the role of caring for her/his parent and siblings, performing domestic chores, arranging appointments while keeping up with homework, out-ofschool activities, attending school and maintaining friendships. Concurrently, he/she could be struggling with the emotional and physical developmental stages of adolescence. Peer support in the group is at its most powerful during such crises. Other participants share similar experiences and all are able to acknowledge that they are not alone in facing these challenges. The following quotes highlight the power of peer support. ‘The facilitators were great, but what made me want to keep going were the other young people in the group, being able to talk with others who know what it is like to have a parent with a mental illness.’ ‘Peer support means being there when things are good or bad, talking with other people your own age about the problems that happen at home. Learning from others and telling the truth when it is so easy to cover up what really is going on, saying it’s okay.’ Other comments included: having a friend, understanding, learning, not being alone, strength.

PATS participants’ stories Vignette 1 ‘When the PATS people came to my house and asked me if I wanted to be in the group, I was scared. I thought I was going to be the only person there that has a parent with a mental illness. I thought everyone else would just be there for the fun of it. The first day I went there I met everyone; the other people were all around my age. The first day was pretty scary. Then every week we went and I learnt stuff about my mum’s mental illness. It was really interesting to learn things about mental illness, so I knew why Mum was acting so strange and why she did the things she did. I also learnt >>

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from the PATS group that I should always give myself attention, too. It taught me that it doesn’t mean you’re selfish if you take the time to give yourself a bit of time off from everything that is going on around you. Also the PATS program was good because they organised special get togethers and we got to meet up with the people who did the group with us, and others from different groups. We even had a camp run by Champs and that was really great too, because we talked to a person who had written a book about how it was living with a parent with a mental illness and how to cope with it. I guess the PATS program has helped me because I feel good about myself and when things go bad I always know what to do … Thank you people who made PATS.’

Vignette 2 ‘PATS was an interesting experience for me. I learnt a lot through the training to become a peer facilitator. When I first found out that my mother had a mental illness, the doctors etc. said she had depression, and put her on a lot of medication. I thought it was one of those kind of illnesses that goes away after a week or two. But then I realised it wouldn’t. I learnt a lot about my mother’s background and how she was treated in her childhood. I stopped being myself and took responsibility for my sisters and I didn’t even know it. My sisters yelled at me a lot and told me off for acting like a mother, even though I was really trying to be myself. I talked to a school chaplain for around a year. I hated it! In the end I told the chaplain that I didn’t like talking to her about my problems. Then I just didn’t talk to anyone at all about my mother, even though both my parents wanted me to. Vivian (facilitator) wrote a letter to my father late last year about training to run a group for kids like me. I’m a shy girl and wouldn’t normally have wanted to be involved in these kind of things, but I had a friend with a mother with a mental illness too, so we decided to do the training together. Helping with PATS has been one of the most important things I’ve done in my life. It has been one of the best things for me in that time of going through adolescence. Thanks for making this happen to me!’

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Evaluation of the PATS program The PATS program is undergoing thorough evaluation through the administration of questionnaires before the program, at the end of the 8-week program, and at both 6-month and 12-month follow-up. This evaluation procedure is designed to ensure the program meets its stated aims, as well as guaranteeing that the ongoing needs of those young people who have attended PATS are addressed. A Reference Group comprising young people assists in the evaluation process by providing feedback about the group processes and outcomes, as well as providing input concerning future directions. Now that PATS has been extended across Victoria, the Reference Groups will also be extended to include young people from regional and rural areas.

Strengths of the PATS program The PATS program provides peer support to enable young people to feel safe and able to express their thoughts and feelings. The importance of peer support in doing this cannot be overstated. The program disseminates information and understanding about mental illness, and confronts negative attitudes towards the illness held by the young people and the community. It helps to equip them with the resources to perform their duties in the family and improve their relationships with the mentally ill parent. It provides the opportunity to reflect on the impact their parents’ mental illness may have on them, and how they may deal with their lives differently. Training offered to young people wanting to become peer leaders provides the opportunity to develop skills in leadership, empathy, teaching and group work.

Limitations of the PATS program The program runs for 8 weeks, and provides social outings during school term breaks. It is doubtful whether this provides participants with sufficient resources to be able to address the complex issues that may arise after the group program has concluded. It would be useful to provide one to two sessions after approximately 6 months, to enable young people to reflect on and refresh their learning experiences, as well as giving them the chance to address new issues. Transportation can be a major obstacle for some young people who would like to attend PATS groups, especially those living in regional and rural areas. Support and Carer Respite Services (for example, Villa Maria Carer Services) are sometimes able to provide taxi vouchers to guarantee attendance. This is an important service because, for some, dependence on families for transport

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would make attendance unlikely. Villa Maria Carer Services and Lilydale PATS are currently exploring the possibility of obtaining reliable funding to extend this transportation service to other young people wanting to attend the program.

Future directions At the time of writing, the regional mental health program (Eastern Health Mental Health Program, in partnership with Upper Murray Family Care in rural Victoria) had received funding for a 3-year program to develop a model of good practice in the promotion of mental health and well-being for children aged 5–12 years who have a parent with a mental illness. This is a great opportunity for services to work together to meet the needs of the children and young people and their families. Collaboration between the Champs programs and PATS now occurs routinely through cross-referral. Exciting opportunities can be foreseen in the near future, with the possibility of young people from PATS providing peer support to the younger group. In addition, PATS young people may speak with the younger group about their experiences, and encourage them to make links with activities available in the broader community.

Facilitator’s reflection The PATS program has given me the opportunity to meet many wonderful young people who have shown humanity, wisdom and courage. Throughout the group process, these young people demonstrate a level of innocence that promotes healthy, creative and supportive discussion that we as adults can learn from. I feel honoured that the young people who attend PATS share such a large part of their personal lives with me. Acknowledgements The Victorian PATS program is coordinated by the Centre for Adolescent Health, Royal Children’s Hospital, 2 Gatehouse Street, Parkville, Victoria, 3052, email: [email protected], website: www.rch.org.au/pats.

References Aldridge, J. & Becker, S. (2003) Children Caring for Parents with Mental Illness: Perspectives of young carers, parents and professionals, Bristol: The Policy Press. Anthony, E.J. (1974) ‘The syndrome of psychologically invulnerable children’, in E.J. Anthony & C. Koupernik (eds) The Child in His Family Vol. 3: Children at psychiatric risk, New York: John Wiley, pp. 529–44. Australian Infant, Child, Adolescent and Family Mental Health Association (2001) Children of Parents Affected by a Mental Illness Scoping Project Peer support activities for children and young people

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Report, Canberra: Mental Health and Special Programs Branch, Department of Health and Aged Care, Commonwealth of Australia, see: www. aicafmha.net.au. Buckwalter, K., Kerfoot, K. & Stolley, J. (1988) ‘Children of affectively ill parents’, Journal of Psychosocial Nursing and Mental Health Services, 26, pp. 8–14. Cohler, B. (1983) ‘Some reflections of the study of offspring of parents with major psychopathology’, The Prevention of Mental-Emotional Disabilities, National Mental Health Association: Alexandria, Virginia, pp. 89–95. Cohler, B. & Musick, J. (1984) ‘Editors’ notes’, Interventions with Psychiatrically Disabled Parents and their Young Children, New Directions for Mental Health Services. Jossey-Bass: San Francisco, pp. 1–5. Cuff, R. & Pietsch, J. (1997) Peer Support for Children of Parents with Mental Illness: Program design and evaluation, Melbourne: Mental Health Research Institute. Cuff, R. & Wragg, S. (1999) ‘Champs camps: Camps for young people aged 9–13 who have a parent with a mental illness’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Darley, D., Gallop, R., Johnston, N. & Pipitone, J. (1997) ‘Children of the mentally ill: A qualitative focus group approach’, Journal of Psychiatric and Mental Health Nursing, 4, pp. 97–103. Garmezy, N. (1984) ‘Children vulnerable to major mental disorders: Risk and protective factors’, in Psychiatry Update: The American Psychiatric Association annual review, 111, Washington: American Psychiatric Press, pp. 91–103. Joudry, R. (2001) Triumph over Tinnitus: A recovery handbook for tinnitus sufferers, Sydney. Luntz, J. (1993) ‘A visit to the United States to observe programs for children whose parents suffer from a serious psychiatric illness’, available from the author, by contact email: [email protected]. Luntz, J. (1995) ‘The invisible dimension in mental health: Children whose parents suffer from a serious mental illness’, Australian Social Work, 48, pp. 19–28. Marsh, D.T. (1996) ‘Meeting the needs of offspring’, Journal of the California Alliance of the Mentally Ill, 7, pp. 56–57. 208

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Oaklander, V. (1988) Windows to our Children: A gestalt therapy approach to working with children and adolescents, New York: Gestalt Journal Press. Orel, N.A., Groves, P.A. & Shannon, L. (2003) ‘Positive connections: A program for children who have a parent with a mental illness’, Child and Family Social Work, 8, pp. 113–122. Pitman, E. & Matthey, S. (in-press) ‘The SMILES program: A group program for children with mentally ill parents or siblings’, American Journal of Orthopsychiatry. Rimington, H., Forer, D., Walsh, B. & Sawyer, S. (1999) ‘Paying attention to self: A peer support program for young people with parental mental health issues’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Robinson, V. (1999) ‘My involvement with Champs’, in V. Cowling (ed.) Children of Parents with Mental Illness, Melbourne: Australian Council for Educational Research. Royal College of Psychiatrists (2002), Council Report CR105, Patients as Parents: Addressing the needs, including the safety, of children whose parents have mental illness, available at: www.rcpsych.ac.uk/publications/cr/index. Rutter, M. & Quinton, D. (1984) ‘Parental psychiatric disorder: Effects on children’, Psychological Medicine, 14, pp. 853–80. Rutter, M. (1985) ‘Resilience in the face of adversity: Protective factors and resistance to psychiatric disorder’, British Journal of Psychiatry, 147, pp. 598–611. Rutter, M. (1987) ‘Psychosocial resilience and protective mechanisms’, American Journal of Orthopsychiatry, 57, pp. 316–31. Schachnow, J. (1987) ‘Preventive intervention with children of hospitalised psychiatric patients’, American Journal of Orthopsychiatry, 57, pp. 66–77.

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A moral loophole

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15

GEORGE HALASZ

‘Biology is the great moral loophole of our age … If psychotherapy is axed from psychiatry by the bottom-line focus of managed care companies, psychiatrists will be taught to see, think, and respond only as the biomedical task would teach them. That would be a terrible mistake.’ (LUHRMANN, 2000)

Why is it so difficult to think about how we fail to care for children of mentally ill parents? In part, our reactions of intense defensiveness are based on realistic fears of forcible removal of ‘at risk’ children, for safety and protection. The question also triggers memories of psychiatry’s recent history, blaming childhood mental disorders on parental (usually maternal) deficiencies: ‘the schizophrenogenic mother’ or autism’s ‘refrigerator mother’. Thankfully, those theories have been discredited, yet maladaptive parenting does exist (Jureidini, Shafer & Donald, 2003). Other reactions are less rational, more personal and need sensitive exploration. New infant development research demands that we rethink and debate the issues raised in this chapter, regardless of the ultimate answers, because the ramifications are enormous. We fail to care for children of mentally ill parents by first not daring to recognise the impact of such illness on the developing child; second, failing to acknowledge the subtle early symptoms of parental mental illness—relying on ‘dripping blood’ (objective) criteria; and third, the current mental health care crisis (see following) has created a culture which increasingly fails to care for children’s developmental needs and the right to be heard.

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CHAPTER

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I argue that if health professionals fail to register early symptoms of parental mental illness, we will fail to reduce children’s exposure to their parents’ later suicide attempts, agitated manic or depressive states, terrifying hallucinations or bizarre delusional stories, paralysing panic attacks, obsessive ruminations or compulsive acts, or severe substance abuse. Why is research on the importance of insecure and/or disorganised parental attachment patterns, one common association of parental mental illness, so often ignored? McFarlane and van der Kolk (1996) argued that the health profession tends to ignore the reality of trauma in people’s lives, an attitude they claim ‘pervades medical school departments of psychiatry, where the response to increasing levels of traumatization in society has generally been to ignore it’ (p. 30). This tendency, to ignore the reality of trauma, extends also to family life. I am repeatedly told of cases in which health professionals increasingly avoid empathy with their stressed or traumatised patients (now called ‘clients’ or ‘consumers’), whether associated with mental illness or not, partly defensively, in order to reduce connection with their emotional pain. Furthermore, the current health culture’s regulatory, legal and fiscal environment all mitigate against spending the sufficient clinical time with patients to develop an empathic understanding of their condition. This ‘time poor’ environment is cultivated by the flawed view that empathy is unprofitable (Book, 1991). Yet, the clinician’s empathy allows access to preand non-verbal communications that speak of chaos, emptiness, despair and shame arising from early infant–parent attachment patterns (Cassidy & Shaver, 1999). Failure to confront this anti-empathic dimension of clinical practice, no less than government policy, risks prolonging the current crisis in child mental health care. In the first part of this chapter, I illustrate this state of affairs both in the United States and Australia, which partly results from the failure to integrate new knowledge from the fields of ‘nature’, ‘nurture’ and ‘development’ (Rutter, 2002). In order to emphasise and illustrate the tendency of the health profession to avoid examining the contributions of infant–parent attachment deficit (Halasz, 2002) to a subgroup of children (Halasz & Vance, 2002) with attention deficit hyperactivity disorder (ADHD), I offer this condition as a case study. It represents both a legitimate set of mental and behavioural symptoms as well as a psychosocial construct that awaits scientific validation as an ‘entity’. I argue that the controversy surrounding ADHD, which really is a cluster of symptoms, is the final expression of a range of developmental, emotional, cognitive, educational or social problems. In part two, I use a clinical case to highlight the essential relevance of a developmental and family history in the treatment of an adolescent. I offer a 214

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contrast between the different understandings, diagnoses and treatments, where a clinical approach is informed instead by what I call a ‘psychological revisionism’. That approach, by ignoring the dimensions of development and family context, substitutes instead a simplistic, behaviourally focused thinking stripped of meaning and motives which degrades the integrity of mental health care and ultimately the future of young people’s recovery in families with mentally ill parents. This latter approach I named psychological revisionism, derived from Austad’s (1996) more restrictive term of ‘psychotherapeutic revisionism’. I will explore why psychological revisionism is eroding the human dimension of mental health care. The current mental health concerns reflect a broader health culture so ‘time poor’ that it erodes the complex, multilayered, nuanced understanding of human experience. This process is pervasively extending beyond the psychotherapy domain. For this reason, despite my reluctance, I felt compelled to introduce the term ‘psychological revisionism’ in order to capture this widespread ‘dumbing down’ of child mental health care thinking. To the best of my knowledge, the term ‘psychological revisionism’ has not been previously published. Kendell & Jablensky (2003) recently articulated modern psychiatry’s increasing failure to distinguish between ‘validity’ and ‘utility’ in psychiatric diagnoses, a fact that contributes to what we see daily as increased suffering of our patients attributed to clinical shortcuts made respectable by psychological revisionism. I argue that children of mentally ill parents are increasingly not recognised as being ‘at risk’, due to the current crisis in mental health arising from both the struggle at the heart of psychiatry and the reflection of a wider social and cultural upheaval. Exploring that bigger picture reveals a concern beyond the traditional political power swings in psychiatry from psychoanalytic to organic paradigms. If the core of the current health crisis is driven by the ideology of psychological revisionism, it succeeds to mimic a scientific stance, yet, characteristic of ideologies, selectively fails to admit knowledge that contradicts the ideology. The chapter underscores the threat posed by psychological revisionism to further erode the ethics of patient care, professional integrity, and to promote a culture which denies the right of the child to be heard in mental health care.

Part one The crisis in psychiatry Professor Bloch’s (1997) brief survey of the history of psychiatric abuse over the past century highlights how the health profession lost its anchorage How we fail to care for children of mentally ill parents—Psychological revisionism in child mental health care

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during two eras driven by extreme ideologies. First, Nazi Germany’s ‘euthanasia program’, justified by the perverse concept of ‘life unworthy of life’ promoted by its racial hygiene policy; second, the brutal experiences in the former Soviet Union where the psychiatric profession was misused to suppress dissidents. Critics will dismiss such comparisons of today’s crisis in psychiatry with echoes from the past as mere scare-mongering. But continued erosion of ethical values in mental health care (Green & Bloch, 2001) driven by economic rationalism, threatens more than the care of children of mentally ill parents. One characterisation of the current crisis in psychiatry, recognised since the late 1990s (Lancet, 1997), has been the widening gap between an increasingly ‘biological’ approach to explain the cause of mental illness, when psychiatric morbidity is equally shown to be based on ‘social and demographic’ factors. This gap reflects the traditional power struggle in psychiatry, the right wing/left wing divide between the mind-less and brain-less dichotomy. However, I suggest that such an interpretation leaves unexplored a more profound crisis. The editor of the American Journal of Psychiatry, Nancy Andreason, proffered a solution to the crisis—to shift our focus and examine ‘symptoms rather than disease categories’. Such an approach would sidestep the depth of the crisis in psychiatry, avoiding the confrontation between ‘validity’ and ‘utility’, accepting utility as an adequate benchmark in clinical diagnosis. The Lancet editorial (Lancet, 1997) grasped the profound problem: ‘Until the schism between narrow neuroscientific and more embracing sociocultural approaches is faced, the future of psychiatry is not biological, but inescapably bleak’ (p. 965). Six years later, that prediction, tragically, is today’s reality. Where to from now? Dr Paul S. Applebaum, President of the American Psychiatric Association (APA), declared the need to take ‘. . . drastic steps to prevent a wholesale collapse of our [United States’] precious mental health system’ (Applebaum, 2003). The APA Task Force noted: ‘The crisis of access to child and adolescent mental health services is particularly acute’ (p. 4). The report concludes with twelve principles for a vision for the United States’ mental health system, emphasising ‘More resources should be devoted to treatment and to training an adequate supply of psychiatrists, especially child psychiatrists, to meet the current and future needs of the population’ (italics in the original document). It behoves us to understand the deeper causes of tension in the United States’ crisis in order to avoid following in their footsteps. Specifically, what lessons

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can child mental health care professionals learn from understanding the relationship of the current mental health crisis to the ideology of psychological revisionism?

What is psychological revisionism? First, I provide a backdrop to understanding how the ideology of psychological revisionism fails to distinguish between ‘science’ and ‘scientism’. Both the science of psychology and the scientism of psychological revisionism believe that therapy should bring relief to patients: the former, by regarding symptoms as arising from the individual’s development and life context, then by determining the ‘nature’, ‘nurture’ and ‘developmental’ dimensions in order to provide rational treatment; the latter, in contrast, focuses on symptoms as utilitarian targets for treatment. Both believe in clinical ‘truth’: the former builds its science on empirically validated research; the latter accepts ‘utilitarian’ arguments to underpin ‘quick-fix’ treatment. This blurring of boundaries in relation to scientific ‘truth’ critically distinguishes between psychological revisionism and the authentic science of psychology as highlighted by Professor Sir Dennis Hill (1971) : ‘(T)here is no such thing as the scientific mind, but many sorts of scientific mind; there is no such thing as the scientific method, but many sorts of method. There is only one sort of contract which the scientist has, which is with truth, from which he must never knowingly depart’ (p. 10). I argue that psychological revisionism by avoiding the body of knowledge based on attachment research departs from one domain of scientific truth centrally relevant to understanding children of mentally ill parents. Psychological anthropologist Tanya Luhrmann’s (2000) acclaimed book diagnosed the United States’ psychiatry profession’s problem in its title: Of Two Minds. The growing disorder in American psychiatry. In summary, she exposed the current fierce war between two forces in psychiatry. Distinguished child psychiatrist Professor Leon Eisenberg characterised this war nearly 20 years ago as ‘the risk of psychiatry trading the one-sidedness of the brain-less psychiatry for the mind-less psychiatry of the future’. Today, I suggest we witness a three-way confrontation between the brain-less, mind-less and soul-less psychiatry (Halasz, 2003). Luhrmann warned that to think about mental illness in a way that strips humanity from its sufferers risks tragic consequences. While analysing the crisis caused by managed care, she shunned the phenomenon of ‘psychotherapeutic revisionism’ with its profound implications. Our society changed radically in the 1990s. Increasingly, economic priorities took precedence over ethical practice. In the mid 1990s, Austad (1996) How we fail to care for children of mentally ill parents—Psychological revisionism in child mental health care

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introduced the term ‘psychotherapeutic revisionism’, in her provocatively titled book Is Long-term Psychotherapy Unethical? Her analysis of the United States’ health care reform, managed care and its revolutionary impact on the individual practitioner, compared long- with short-term therapies, and the incumbent ‘fee-for-service’ model with the harbinger of change, ‘managed care’. In the United States context, she argued for ‘society’s present need for psychotherapeutic revisionism’ (p. 9). Her argument for the ‘need for revised ethics’ was based on her claim that the United States’ health care revolution needed empirically based justification to determine the need for long- and short-term psychotherapy. Tellingly, Austad apologised ‘in advance’ should her book ‘make some people feel uncomfortable’. As I read Austad’s call for psychotherapeutic revisionism, I wondered how the revised ethics would impact on patients and professionals alike. She presented the likely outcome on professionals as falling into one of four categories. First, the ‘old guard’, who opposed the ideology of managed care (Halasz et al., 1997, 1999). Second, the ‘experts’ who ‘go with the flow’, welcome change as challenge and position themselves in anticipation to ‘harvest the opportunities managed care presents’. Third, the ‘grass root clinicians’, the silent majority who are beset with a mixture of uncertainty and ambivalence, and whom she claims with justification feel their moral, ethical and social values betrayed. Finally, the ‘uninitiated’, the beginners who as newcomers to the system are still developing their own values. These four groups Austad classified based on their ethical views, related to individual versus social ethic; best versus minimum interest standards of care; the micro and macro ethics of the doctor–patient relationship. Austad provided no analysis of the long-term impact of these complex changes on children’s rights to adequate time for clinical assessment. Her fatally flawed vision of reform dovetails with Harvard Business School’s Regina Herzlinger’s (1997) vision of a health care system built around a radical concept of ‘focused factories’. Focused factories, according to Herzlinger, provide convenient, specialised health care that enables greater comparison shopping for clients by providing clear data on price, quality, customer satisfaction and standardised service; in other words, a McDonaldisation of medicine. Austad’s revisionism, when combined with Herzlinger’s vision, extends beyond mere psychotherapeutic revisionism. These extended aims to provide cost-saving techniques embrace mental health care decision making beyond just psychotherapy. As an example of the new paradigm in medical practice, Piterman (2003) argues that evidence-based medicine (EBM) and clinical practice guidelines (CPG) can be seen as a two-edged sword. Piterman 218

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highlights that on the surface the rationalist agenda of EBM and CPG seek to create order in health care agenda; government policy can manipulate these tools to serve purposes that are beyond their capacity, undermining their potential value. She emphasises that it ‘constitutes a new truth and the authority regarding scientific practice, resulting in the undermining of other truths, in particular the array of truths that take place in the clinical encounter’. Before providing a clinical case example, I first illustrate how this kind of psychological revisionism in public health has transformed the symptoms of ADHD into a major public health controversy. Simply, the competing claims centre on the status of the symptoms of ‘attention deficit’ and ‘hyperactivity’: symptoms or illness. Some professionals reify these symptoms as a disorder, others maintain they are just that, symptoms.

Is ADHD a valid disorder or a manufactured illness? This controversial question arose after the United States National Institutes of Health (NIH) ADHD consensus statement, based on thirty-one expert ‘testimonies’ (NIH, 2000). They concluded that the diversity of opinions expressed about ADHD ‘raises questions concerning the literal existence of the disorder, AND whether it can be reliably diagnosed’. In an accompanying article, Dr Peter Jensen, from the United States National Institute of Mental Health, a distinguished expert in the ADHD field, stated that according to the panellists ADHD remains of ‘unproven’ status which ‘should give pause to both researchers and clinicians who may have reified ADHD as a “thing” or “true entity” (rather than a working hypothesis that serves scientific, communication, and clinical decision-making purposes)’ (Jensen, 2000). He did provide the caveat not to confuse ‘unproven’ with ‘disproved’. In order to seriously challenge the ‘literal existence of the [ADHD] disorder’, one has to expose the hidden logic behind some research effort into this ‘disorder’ where some researchers seem to ignore the NIH’s conclusion and continue to reify ADHD as an ‘entity’. For example, Hudziak’s (2000) premise: ‘The value of identifying genes that influence the development of attention deficit/hyperactivity disorder is immense’ (p. 57) should be followed after the status of ADHD is established rather than committing scarce research dollars in the search for the ‘genetic’ basis of complex behavioural symptoms. There are plausible psychosocial causes for ADHD symptoms, including prenatal dysregulation, inattentive caretakers, family stresses as follows death, divorce or serious illness, situational traumas, or attachment deficit coupled with hyper-reactivity (Halasz, 2002). George Bush’s ‘President’s Council of Bioethics’, mandated to explore ethical issues in the use of drugs to control children’s behaviour (Diller, 2002), has exposed the practice of prescribing Ritalin for ‘performance enhancement’ How we fail to care for children of mentally ill parents—Psychological revisionism in child mental health care

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rather than ‘treatment’ of ADHD; a form of ‘steroids for the brain.’ The concept of ‘performance enhancement’ refers to the practice common among sporting figures to take medication to boost performance in the absence of medical indications. In Australia, Dr Gil Anaf, President of the National Association of Practising Psychiatrists, highlighted our national attitude of readily giving children ‘suppressive drug regimes’ instead of thinking and discovering the meaning of children’s symptoms. Despite his submission to the Social Development Committee of the South Australian Parliament’s Inquiry into ADHD, Dr Anaf noted the Committee’s failure to address the ‘catastrophic decline’ in services for children (Anaf, 2002). In Australia, the ABC television science program Catalyst (1 May 2003, www.abc.net.au/catalyst) broadcast ‘Kids and Drugs’ to highlight the growing trend to prescribe drugs to control children’s behaviour and mood. The program explored the wide range of professional opinions parents face when caring for children with behavioural problems. Health professionals, lacking consensus, offered at times opposing recommendations for treatment. These opinions ranged from diet and natural therapies—part of the holistic tradition—to the use of powerful medication, with serious, sometimes lifethreatening, side effects. Some viewers were left to wonder whether medicating children who have behavioural problems reflects the belated recognition of a legitimate condition or, as others countered, merely changes in medical values. One emerging trend, ‘disease mongering’, a term introduced by Moynihan (Moynihan, Heath & Henry, 2002), refers to the process by which the pharmaceutical industry tried to convince the medical profession to expand definitions of illness. This is part of a wider social phenomenon which Anne Manne (2002) graphically highlighted: ‘In the past, when a canary was taken down a mine its delicate respiratory system quickly told the miner whether noxious fumes, damaging to human health, were lurking in the mine shaft. Children, perhaps, are our contemporary canaries. Their mental health is telling us that all is not well. So many children now appear to need Ritalin or a related medication or—one might say—‘junior’s little helper’. I suggest that as a society we should stop dead in our tracks and ponder why . . . What is the social and economic habitat in which children, parents and their caregivers now live? How might such a habitat create the conditions for an ADHD epidemic? What is crucial in the ADHD debate is to go beyond the palliative treatment of symptoms to the social and family conditions that lie behind it—the cries unheard’ (p. 10). 220

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In the United States social and economic habits explain, in part, the reason for the dramatic increase in prescriptions for children, whereby clinicians need to justify requests for authorisation for developmental assessments from managed care. According to their clinical guidelines, it is easier to meet the criteria approving the authorisation for medication than for developmental assessments. Children who have been exposed to risk factors such as a ‘history of parental loss, exposure to a traumatic event, placement in foster care, lead exposure, or abuse or neglect do not in and of themselves warrant comprehensive developmental assessment [my italics]. It is the behavioral signs, symptoms, or functional problems that raise concern about the presence of a developmental or psychiatric disorder. In the absence of symptoms, a comprehensive assessment is usually not warranted’ (Schaefer, 1999, pp. 430–31). Schaefer concluded ‘In the future, there is significant danger that developmental assessment and treatment procedures for young children will be inappropriately constrained and diminished’ (p. 436) [my italics]. So far, in summary, I have tried to characterise the crisis of the child mental health profession on two levels: first, caught in the right wing/left wing divide of brain-less and mind-less psychiatry; second, complicated by the recent emergence of the culture of psychological revisionism. The need to postulate the culture of psychological revisionism arises when we confront the systematic denial of scientifically validated attachment research that is beyond the traditional, mindless/brainless conflicts. ADHD, as a case study, serves to highlight how scientific truth is denied by psychological revisionism which redefines the parameters of child psychiatry by such denial of the central importance of developmental research based on the ‘lived experience’ of attachment patterns. Thomson-Salo (2002) offers an elegant synthesis of early traumatic attachment patterns linking to later ADHD. How psychological revisionism challenges traditional clinical medicine’s approach to assessment, diagnosis and treatment of young people’s mental illness symptoms is best illustrated with a case study which dramatically highlights different outcomes between the two systems.

Part Two Parents and the ‘parentified child’ First, a few reflections on challenges shared by parents and child mental health care professionals. I will assume the reader is familiar with the clinical experience of the impact of parental mental illness on the emotional development of a child (Winnicott, 1965/78; Alvarez, 1992). The business of parenting, at least initially, involves parents, grandparents, extended family How we fail to care for children of mentally ill parents—Psychological revisionism in child mental health care

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and friends, teachers and other carers taking total responsibility for the infant’s needs and well-being. This contrasts with the so-called ‘parentified child’ situation, in which the direction and balance of caregiving is reversed, flowing from the child, to care for parents and others (West & Keller, 1991). Like no other sphere of human relationship, parenting demands continuity of care in order to nurture the infant’s secure sense of a continuity of being. An infant’s dependence on its caregiver is absolute. Everything an infant needs must be supplied by someone else, and getting those needs met depends, in a large measure, on the circumstances surrounding the empathic attunement between the caregiver and the infant. Those circumstances determine whether the infant can be satisfied or frustrated. Such non- and pre-verbal empathic communication with an infant regulates the stress-relief cycles (derived from infants, without words). Stern (1985) suggests that these early cycles in interpersonal relationships are critical for the developing infant’s sense of self and core identity.

Intimacy, dysregulation and mental illness Parental mental illness that interferes with mental function includes depression, post-partum psychosis, severe disturbance of personality function, drug or alcohol addiction and the like. Such conditions may significantly impair the parent’s capacity to regulate the infant’s immediate needs. The systematic study of the effects of parental mental illness on children is one of the most challenging fields in mental health. Difficulties arise from changing definitions of mental illness and family dysfunction; different thresholds for diagnosis; and varying concepts of transmission of illness between parent and child. These are compounded by differing outlooks among the disciplines of education, welfare, health and the law, as each interprets problematic behaviour according to its own criteria. Not surprisingly, the jury is out on a number of clinical questions: How does parental mental disorder impact on the child’s development? What mechanisms are involved? Are children more susceptible to acute or long-term parental disorders? Who decides on priorities confronted by the competing needs of parents and children? Must a conflict of interest be resolved? What aspect of child development is ‘dysregulated’ by parental mental illness? How do ‘stressed’, ‘normal’ and ‘mentally ill’ parents differ in their parenting? Questions such as these concern professionals working in child mental health settings. I turn to two clinical approaches: first, a biologically informed, psychological revisionist approach, and second, a contrast with a clinical professional informed by the value of long-term therapy focusing on lived experiences. The two approaches arrive at different diagnoses, treatments and outcomes. 222

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How early childhood influences later life I first saw ‘Michelle’*, aged 15, with her parents and a younger brother, who was referred for a fourth medical opinion. Michelle’s most recent doctor’s letter noted an 18-month history of ‘chronic improving headache, and underlying depression and anxiety’. The start of her illness included ‘headsplitting’ headaches associated with both sensory loss and partial weakness of her right arm. Episodes of slurred speech, staggering gait, dizziness and altered states of consciousness led to serious concerns about possible neurological problems; a battery of tests was the result. Under the care of both a paediatrician and neurologist, investigations included an electroencephalogram (EEG) to trace the electrical activity of the brain, and sophisticated brain imaging. All results were normal. Thus, doctors excluded an organic cause. In particular, no evidence was found for a diagnosis of epilepsy, cerebral haemorrhage, transient ischaemic attacks or cervical rib syndrome. The diagnoses made were migraine, depression and anxiety. Sadly, Michelle was told that her symptoms could ‘affect her for the rest of her life’. Prior to her illness, Michelle was achieving well both academically and in sport, was popular with her peers and had many friends. Michelle and her family were desperate to understand why she should be anxious and depressed when everything seemed to be going well. Her condition was a mystery to the family. Michelle was prescribed various medications. Initially, she responded to an anti-hypertensive and an anti-depressant.

A developmental assessment I opted to focus on her developmental history. Mapping milestones, with questions about early feeding (she was breastfed, with difficulties); timing of and reason for weaning; age of first speech; talking, walking and toilet training; response to infant–parent separations and birth of her sibling, I gradually gained a picture of her early life. The information provided me with a context to understand her presenting complaints. At interview, Michelle was an attractive, fair-complexioned, fit, tall, tense, yet engaging teenager. She cooperated despite her distress as she told her story to yet another professional. She hovered between interest in my comments and being frustrated, given that I was unable to offer an immediate solution. Visiting doctors, instead of attending school, had become a new routine.

* This clinical case is a composite of a number of families I have treated; the names, family make-up and other identifying features have been changed to preserve privacy.

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Her autobiographical memory was patchy. Michelle’s parents filled in some parts. Her sleep pattern had altered dramatically prior to her florid symptoms from her usual 6–7 hours to an erratic pattern with nights of virtually no sleep alternating with 15–20 hour ‘marathons’. These would be interspersed with nights of insomnia. Michelle described her moods from these sleep patterns as ‘zombified’. My feedback to the family First, I told Michelle and her parents how all the comprehensive testing indicated that they were determined to leave no stone unturned to help their daughter. Her parents were ‘heroic’ in their efforts to ensure that any possible cause was excluded. Then I drew a picture of the brain to educate the family about what I thought was happening. My conclusion was that after all the physical, neurological, vascular, muscular and bone conditions that could possibly explain Michelle’s condition had been investigated to the limits of science and found to be normal, we should consider possible psychological factors. The family looked puzzled. I was not confident that my approach was working, and said so. At the same time I was reassured by past experience, managing two young patients with non-organic paralysis that eventually resolved. But I recalled the work involved. In one, there was a need for lengthy hospital care. I explained to Michelle and her parents that psychological conflict, even old ones from earliest childhood, could leave traces in the developing mind and brain. As I spoke I had in mind the evidence of early infant–mother dysregulation. Professor Schore’s model proposed that the infant’s early neural architecture, shaped by pre-verbal infant–mother interactions, if disrupted by stress, can result in later psychological symptoms. I ventured that Michelle’s symptoms, all located in the body, could be understood by a notion advanced by Professor van der Kolk that the body remembers stress and trauma even from infancy. To suggest to a family that they might, even inadvertently, have traumatised their baby is extremely delicate. Parents who sense they may be blamed become defensive—the doctor risks having them terminate the assessment. This has to be kept in mind. Discretion and titrating the emerging information are paramount if doctor and parents want to develop an alliance based on trust. Michelle’s parents felt they were in a ‘catch-22’. On the one hand, they should avoid broaching any topic that stirred up feelings, as they seemed to make Michelle’s headaches worse. At the same time, they saw an agenda for family

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therapy. By recommending this special form of psychotherapy, I offered the family a forum that would allow them to do just that—revisit times of childhood stress and trauma in a safe manner. It seemed an insoluble paradox. I suggested that we all live through stress and that successful coping is not centred on the absence or avoidance of such stress. I reassured them that all families pass through stress with their young infants and children. I emphasised that an outcome depended on the capacity of the parents to provide ‘reparative moments’ to their children. I explained this concept as ‘moments of meeting’ (Stern, 1998) in which parent and child interact in a way that results in a new mutual understanding. Previous impasses can be resolved. How did the therapy provide an environment in which the family ‘relived experiences’ that led to reparative moments? In exploring Michelle’s past, critical life events emerged which were relevant to family relationships. These indicated stressful, even traumatic early attachment. However, her parents were more concerned with recent events. They suggested that the headaches were triggered by the stress of ‘personally challenging incidents’ that had occurred two years previously. The family hinted at the possibility of sexual interference by a teacher. We explored the event but Michelle denied any transgression. I accepted that the parents’ concerns were misplaced. What did emerge, however, was a stressful father–daughter relationship characterised by episodes of physical abuse. These took the form of hitting and once holding her head in the toilet bowl. This event, never previously discussed, created a deep sense of remorse and shame in Michelle’s father and in her mother, who had felt unable to protect her daughter. Her father broke down in tears. Michelle, deeply moved, also cried for the first time. After this reparative moment I showed my surprise that Michelle’s childhood relationships with mother, father and younger brother had never been discussed with any of the professionals they had consulted. It took two years of fortnightly family therapy to detail the extensive trauma that surrounded Michelle’s birth, a double trauma. There were obstetric complications and a long, traumatic birth compounded by her mother’s sense of isolation. The mother had no support from her own family or her in-laws. Under extreme stress, she developed paralysis of her arm and struggled with breastfeeding. These events were further compounded by stress when Michelle’s maternal grandparents separated, and later divorced. Her mother had also experienced episodes of headaches and unexplained weakness with

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paralysis of her right arm, just like her daughter was experiencing 15 years later as an adolescent. Taking care of baby Michelle required that there be ‘turn-taking’ between her physically disabled mother and her father. Her mother described her struggle to find a comfortable position in which to nurse her new baby—barely coping, handing Michelle to her father, who was stressed by his new dual caring roles for both his invalided wife and new baby. Michelle’s mother’s condition deteriorated to a degree that interfered with her ability to breastfeed Michelle, and her father began feeding her with a bottle. ‘Reparative moments’ Family therapy provided Michelle and her family with many opportunities to relive experiences with her parents, who were now supported in their capacity to provide her with moments of repair. By the end of the third year, Michelle’s need for anti-depressant medication was dramatically reduced. One aim of treatment was eventually to stop medication. She is mostly free of her psychosomatic headaches and has had no further episodes of loss of sensory or motor function in her arm. However, during family therapy, as Michelle’s and her family concerns shifted away from the symptoms, she began to struggle with bewildering states I called new feeling states of ‘lived experience’. Over months, Michelle gradually developed a new vocabulary. She increasingly learnt to recognise and then name her ‘painful’ emotions: ‘worry’, ‘anxiety’, ‘shame’, ‘anger’, ‘rage’, ‘confusion’, ‘despair’. Michelle’s sense of a ‘verbal self’ (Stern, 1985) flourished, allowing her to relate in new and more age-appropriate ways within her family. At the same time, Michelle’s increased autonomy was linked with a new confidence borne of recognising and regulating her moods. The years of alternate-week family therapy included regular ‘homework’, with Michelle and her parents committing themselves to ‘briefing’ and ‘debriefing’ sessions to discuss stressful family events before and after they occurred.

Discussion •

A sceptic would easily miss the point of this case history and suggest that any adolescent, after years of therapy as the centre of attention, would eventually learn about her/his feelings and learn to ‘regulate’ him/herself. They could also dismiss Michelle’s decreased need for medication, claiming it as proof that her medication ‘worked’. >>

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•

Finally, they will claim that a single case proves nothing. I would be tempted to agree. However, the sceptic has missed the point of the case. The outcome of three previous interventions was to offer Michelle a life of disability based on a denial of her right to be heard ‘from the inside’.

•

Young people have a right to be heard (Halasz, 1996). Michelle’s early history highlighted long-standing family stresses, from early infant–mother attachment problems to later physical abuse. These lived experiences were never acknowledged; they were from Michelle’s point of view ‘unknown’. Family therapy transformed the unknown to known.

•

Michelle’s initial treatment with medication, in the absence of a psychological program, could arguably be considered inferior medical practice. Dr Alan Mawdsley, in another context, suggested that prescribing medication in the absence of other intervention should be considered medical negligence (quoted in Halasz & Vance, 2003).

•

The major issues in this case are: first, children’s right to be heard is a necessary precondition to accurate medical diagnosis. Michelle’s hysterical conversion reaction was either not diagnosed or parents were uninformed; second, Michelle’s medication probably relieved her secondary depression and anxiety. However, while medication may have been necessary, it was insufficient treatment. Third, Michelle’s anxiety and depression could also be reasonable reactions to her long-standing, unrecognised, childhood post-traumatic stress disorder. Finally, it is possible that her symptoms were direct ‘ripple effects’ from the trauma themselves. It is beyond the scope of this chapter to discuss how, in the absence of ‘organic’ problems, nongenetic, intergenerational transmission of trauma and symptoms occur (Valent, 2002; Danieli, 1998).

•

The sceptic would miss the real point of the case history: a valid diagnosis cannot be made in the absence of a detailed developmental history. The clinical method I have outlined demands that the earliest infant–parent attachment patterns be elicited. This contrasts with the psychological revisionists, who deny the relevance of such clinical data. The sceptic will trivialise or deny the essential relevance of the developmental and contextual history that absolutely leads to understanding, accurate diagnosis and treatment of children of mentally ill parents. >>

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•

Such a sceptic would qualify as a psychological revisionist whose criticism is based on views that behavioural problems, emotional disorders and mental illnesses be stripped of three essential domains of lived experience: first, developmental; second, contextual dimension; third, subjective experiences associated in children with play, dreams and fantasies, core experiences of interpersonal psychological therapy with children. Treatment guidelines for children that omit these dimensions of lived experience, or merely give lip-service, underline the revisionist approach that places emphasis on the formulaic ‘checklists’ at the exclusion of the clinical process that drives clinical practice.

•

My question really is: How are we supposed to deal with the emotional and behavioural symptoms of childhood and adolescence when psychological revisionism erodes and/or ignores the traditional art and science of medicine in psychiatric training, clinical practice and government policy?

•

If we uncritically accept the ‘ostensibly beneficent ideology of protocol-directed, evidence-based criteria of care which the government seeks to impose through its mental health strategy’ as described by Dr Ed Harari (1999), we run the grave risk of further dumbing-down the culture of ethical, value-driven medicine to become limited mental technicians of the 21st century.

Postscript Professor Allan N. Schore (2003) offers a new perspective on how early infant–caregiver experiences provide a model, the synaptic remodelling by lived experience, to explain children’s mental and emotional development. The complex regulation/dysregulation that occurs between mother and infants as ‘lived experience’ has the power to change architecturally the developing infant’s brain. Such a view has profound implications: first, the way we think about the later consequences of an infant’s earliest lived experiences; second, the specific developmental trajectory set by the earliest relationships on later well-being or dysfunction; third, the imperative for early intervention with the ‘at risk’ populations, including children of mentally ill parents; and, finally, affording a deeper understanding of how psychological therapy ‘works’. Time will tell if psychological revisionism will further prevent the advance of the art and science of mental health care in children of mentally ill parents. 228

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Acknowledgements I am grateful for the generous and helpful comments on earlier drafts made by Sidney Bloch, Robert Chazan, Beverley Davis OAM, John M. Davis, Jeanette Friedman (United States), Caryl Hertz, Jon N. Jureidini, Hannah Piterman, Paul Valent and Geoff Zygier.

References Alvarez, A. (1992) Live Company. Psychoanalytic psychotherapy with autistic, borderline, deprived and abused children, London: Routledge. Anaf, G. (2002) ‘ADHD and the subversion of meaning’, in G. Halasz, G. Anaf, P. Ellingsen, A. Manne & F. Thomson-Salo (eds) Cries Unheard. A new look at Attention Deficit Hyperactivity Disorder, Altona: Common Ground, pp. 29–43. Applebaum, P.S. Letter dated 4 April, 2003, accompanying ‘A vision for the mental health system’, American Psychiatric Association, at www.psych.org/news_stand/visionreport040303.pdf (downloaded 5 April, 2003). Austad, C.S. (1996) Is Long-term Psychotherapy Unethical? Toward a social ethic in an era of managed care, San Francisco: Jossey-Bass. Bloch, S. (1997) ‘Psychiatry: An impossible profession’, Australian and New Zealand Journal of Psychiatry, 31, pp. 172–83. Book, H.E. (1991) ‘Is empathy cost efficient?’ American Journal of Psychotherapy, 45, pp. 21–30. Cassidy, J. & Shaver, P.R. (eds) (1999) Handbook of Attachment. Theory, research, and clinical application, New York: Guilford Press. Danieli, Y. (ed.) (1998) International Handbook of Multigenerational Legacies of Trauma, New York: Plenum. Diller, L. (2002) ‘President Bush’s Council on Bioethics Prescription Stimulant Use in American Children: Ethical Issues’, 12 December, see www.bioethics.gov. Green, S.A. & Bloch, S. (2001) ‘Working in a flawed mental health care system: An ethical challenge’, American Journal of Psychiatry, 158, pp. 1378–83. Halasz, G. (1996) ‘The rights of the child in psychotherapy’, American Journal of Psychotherapy, 50, pp. 285–97. Halasz, G. (2002) ‘“Smartening up” or “Dumbing down”? A look behind the symptoms at overprescribing and reconceptualising ADHD’, in G. Halasz, G. Anaf, P. Ellingsen, A. Manne & F. Thomson-Salo (eds) How we fail to care for children of mentally ill parents—Psychological revisionism in child mental health care

229

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Cries Unheard. A new look at Attention Deficit Hyperactivity Disorder, Altona: Common Ground pp. 75–91. Halasz, G. (2003) ‘Can psychiatry reclaim its soul? Psychiatry’s struggle against a dispirited future’, Australasian Psychiatry, 11, pp. 9–11. Halasz, G., Borenstein, R., Buchanan, J. et al. (1997) She Won’t Be Right, Mate! The Impact of Managed Care on Australian Psychiatry and the Australian Community, Melbourne: Psychiatrists Working Group. Halasz, G., Borenstein, R., Buchanan, J. et al. (1999) She Still Won’t Be Right, Mate! Will Managerialism Destroy Values Based Medicine? Your Health Care at Risk! Melbourne: Psychiatrists Working Group. Halasz, G. & Vance, A.L.A. (2002) ‘Attention deficit hyperactivity disorder in children: Moving forward with divergent perspectives’, Medical Journal of Australia, 177, pp. 554–57. Halasz, G. & Vance, A.L.A. (2003) ‘Attention-deficit hyperactivity disorder: Divergent perspectives’, Medical Journal of Australia (letter), 178, pp. 247–48. Harari, E. (1999) ‘Is anybody listening (or thinking)?’, in G. Halasz, R. Borenstein, J. Buchanan et al. (eds) She Still Won’t Be Right, Mate! Will Managerialism Destroy Values Based Medicine? Your Health Care at Risk! Melbourne: Psychiatrists Working Group, pp. 180–85. Herzlinger, R. (1997) Market Driven Health Care. Who wins, who loses in the transformation of America’s largest service industry, Reading: Addison-Wesley. Hill, D. (1971) ‘On the contribution of psychoanalysis to psychiatry: Mechanisms and meaning’, International Journal of Psychoanalysis; 52, pp. 1–10. Hudziak, J.J. (2000) ‘Genetics of Attention-Deficit/Hyperactivity Disorder’, in T.E. Brown (ed.) Attention-deficit Disorders and Comorbidities in Children, Adolescents and Adults, Washington: American Psychiatric Press, pp. 57–78. Jensen, P.S. (2000) ‘Commentary: The NIH ADHD consensus statement: Win, Lose, or Draw?’ Journal of the American Academy of Child and Adolescent Psychiatry, 39, 194–97. Jureidini, J.N., Shafer, A.T. & Donald, T.G. (2003) ‘Munchausen by proxy syndrome: Not only pathological parenting but also problematic doctoring?’ Medical Journal of Australia, 178, pp. 130–32.

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Kendell, R. & Jablensky, A. (2003) ‘Distinguishing between the validity and utility of psychiatric diagnosis’, American Journal of Psychiatry, 160, pp. 4–12. Lancet (1997) ‘Editorial: The crisis in psychiatry’, Lancet, 349, p. 965. Luhrmann, T.M. (2000) Of Two Minds. The growing disorder in American psychiatry, New York: Alfred A Knopf. Manne, A. (2002) ‘Cries unheard: Children, ADHD and the contemporary conditions of childhood’, in G. Halasz, G. Anaf, P. Ellingsen, A. Manne & F. Thomson-Salo (eds) Cries Unheard. A new look at Attention Deficit Hyperactivity Disorder, Altona: Common Ground, pp. 7–27. McFarlane, A.C. & van der Kolk, B.A. (1996) ‘Trauma and its challenge to society’, in B.A. van der Kolk, A.C. McFarlane & L. Weisaeth (eds) Traumatic Stress. The effects of overwhelming experience on mind, body, and society, New York: Guilford Press, pp. 24–46. Moynihan, R., Heath, I. & Henry, D. (2002) ‘Selling sickness: the pharmaceutical industry and disease mongering’, British Medical Journal, 324, pp. 886–91. National Institutes of Health 2000 ‘Consensus Development Conference Statement 2000. Diagnosis and treatment of AttentionDeficit/Hyperactivity Disorder (ADHD)’, Journal of the American Academy of Child and Adolescent Psychiatry, 39, pp. 182–93. Piterman, H. (2003) ‘You’re either with us or you’re against us. Dominant discourse in health care practice’, presented at 20th Annual Meeting of International Society for the Psychoanalytic Study of Organizations, Power and Politics, Boston, USA, 19 June 2003. Rutter, M. (2002) ‘The interplay of nature, nurture, and developmental influences. The challenge ahead for mental health’, Archives of General Psychiatry, 59, pp. 996–1000. Schaefer, M. (1999) ‘Mental health assessment of young children in a managed care environment’, Child and Adolescent Psychiatric Clinics of North America, 8, pp. 425–37. Schore, A. (2003) Affect Regulation and the Repair of the Self, New York: W.W. Norton. Stern, D.N. (1985) The Interpersonal World of the Infant: A View from Psychoanalysis and Developmental Psychology, New York: Basic Books.

How we fail to care for children of mentally ill parents—Psychological revisionism in child mental health care

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Stern, D.N., Bruschweiler-Stern, N., Harrison, A.M., Lyons-Ruth, K., Morgan, A.C., Nahum, J.P., Sander, L. & Tronick, E.Z. (1998) ‘The process of therapeutic change involving implicit knowledge: Some implications of developmental observations for adult psychotherapy’, Infant Mental Health Journal, 19, pp. 300–308. Thomson-Salo, F. (2002) ‘The trauma of depression in infants. A link with attention deficit hyperactivity disorder?’, in G. Halasz, G. Anaf, P. Ellingsen, A. Manne & F. Thomson-Salo (eds) Cries Unheard. A new look at Attention Deficit Hyperactivity Disorder, Altona: Common Ground, pp. 61–74. Valent, P. (2002) Child Survivors of the Holocaust, New York: BrunnerRoutledge. West, M.L. & Keller, A.E.R. (1991) ‘Parentification of the child: A case study of Bowlby’s compulsive care-giving attachment pattern’, American Journal of Psychotherapy, 45, pp. 425–1. Winnicott, D.W. (1965/1978) The Family and Individual Development, London: Tavistock Publications.

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Appendix 1 HYPOTHETICAL D AV I D A . H AY

Developmental issues for a woman with schizophrenia (Jenny) and her child (Mandy) (Note that these questions are phrased around potential problems at different stages in the development of the child. While these problems may not necessarily occur, in our experience they are typical of the issues that may arise during development.) The questions follow the sequence of events in two scenarios. Scenario 1—the child stays with the mother Scenario 2—the child goes into permanent care with another family ROLE-PLAYING You may find it useful to go beyond merely discussing the questions, by considering how they would be approached by different service agencies, such as an adult psychiatric service, a family support group, a child protection agency, an adoption and permanent care agency etc.

Pregnancy and birth Jenny is a 28-year-old woman with chronic schizophrenia who is 5 months pregnant with her first child. She does not have a good relationship with her family or partner, and is not able to rely on them for support. (a) What features of Jenny’s family history would you focus on in deciding the potential genetic risk to the child? How would your views of the risk change if the child’s father were: i.

a married, professional man with whom Jenny had a brief relationship?

ii. a man Jenny met while they were both members of an unorthodox religious sect? iii. a man with schizophrenia she met while attending a clinic? (b) Jenny does not see the need to go for antenatal check-ups, far less to attend classes. In any case, the clinic is not encouraging her to attend, as some of the other parents-to-be find her behaviour and conversation unsettling. Jenny continues to smoke a lot and to drink innumerable cups of coffee. What do you do? Appendix 1

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(c) There is a real concern that Jenny may have another episode of psychosis just after the baby is born. What do you do in advance?

Babyhood Mandy has been born. She is a little smaller than other babies, and seems a bit slower in reaching her developmental milestones. Otherwise, she is a happy, healthy child. How would you respond to the following statements by Jenny? i. ‘I don’t see the baby as being any hassle. I usually sleep till late and she knows there’s no point in keeping on crying.’ ii. ‘I’m thrilled that Mandy is the reincarnation of Mary, the mother of Jesus.’ iii.Over the next few months, you become more concerned about the family. Mandy seems to be less responsive, is not growing at the expected rate and has many infections and nappy rashes. Jenny has stopped taking her neuroleptic medication, and both positive and negative symptoms are becoming more apparent. Scenario 1 What do you do to help Jenny and to keep her and Mandy together? Scenario 2 (a) What factors (in Jenny, her support network and in Mandy) do you take into account in deciding that Mandy’s needs will best be met by living apart from Jenny? (Note: there is no evidence of physical or sexual abuse.) (b) Mandy is in foster care. Jim and Mary Smith are interested in looking after her in permanent care. How do you respond to the following two statements: i.

‘If we give her lots of love and a supportive environment, she will develop okay.’

ii. ‘Schizophrenia is genetic, so Mandy will get it?’

Pre-school Scenario 1 (a) Jenny says she is meeting all of Mandy’s needs in that Mandy is well fed (with an excess of convenience and snack foods) and is clean. Is there anything more to parenting? (b) Some of the other parents at the pre-school wonder about Jenny. She doesn’t talk to them and, for example, doesn’t enthuse over Mandy’s artistic endeavours in the way that the other parents do. In fact, she often leaves them at the pre-school, saying it is too awkward to take them home. What do you do? 234

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Scenario 2 (a) Jim and Mary are concerned. Sometimes Mandy seems very quiet, other times she is vehement about what she wants. Jim and Mary had had little experience of children before Mandy came into their lives. They seem preoccupied with identifying the first signs that she is going to become schizophrenic. What do you say and do? (b) Jim’s mother keeps on saying that all schizophrenics ‘are crazy and a bad lot’. How would you try to help her change her attitude, especially when Mandy is around? (c) Jim and Mary say that they don’t want to tell people why Mandy came to them in case she is ‘labelled’. Is this a good idea?

Primary school Scenario 1 (a) Mandy says she is much luckier than the other kids at school She gets to boss her mum around, to decide what they eat and when she goes to bed. Is this a good idea, and what do you do? (b) Mandy is upset. Some of the parents of the other children will not let them go home with Mandy to play with her because they ‘know’ about her mother? What do you do, without emphasising Mandy’s home situation even more? Scenario 2 (a) Some of the other kids have found out about Jenny’s illness, and the favourite game in the playground is taunting Mandy about her mother. What should Jim and Mary do? (b) Jenny turns up intermittently for her access visits. Jim and Mary are becoming increasingly concerned about Jenny’s condition. Her speech is more and more rambling and is full of ideas about persecution. i. Should the next access visit go ahead, and what can be done in advance to check on Jenny’s status? ii. Jenny spends the next visit ignoring Mandy and rambling on about Jim and Mary, saying the reason they could not have their own children was the will of God. What do you do to help Mandy cope with this episode?

Adolescence Both scenarios (a) Mandy is angry. Why is it her mum who has to be ‘different’? How can you help her? Appendix 1

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(b) Everyone is worried. Mandy seems different. Is she just a rebellious teenager or is she too becoming schizophrenic? What advice can you give and what signs do you look for? (c) Mandy is unhappy. She thinks she will never have a relationship and will never have her own children. Everyone will think she too will develop schizophrenia, as will her children. What do you say?

Adulthood ‘When you have been through that . . . you can never be happy, you can never laugh as others do, you always have to be ashamed of yourself and take care not to break down yourself.’ (QUOTE

MANFRED BLUELER’S (1974) ‘THE OFFSPRING OF SCHIZOPHRENICS’, SCHIZOPHRENIA BULLETIN, 3, PP. 93–107)

FROM THE OFFSPRING OF A PERSON WITH SCHIZOPHRENIA IN CLASSIC STUDY

What do you say and do?

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Resources For children and young people A Booklet for Young People About Mental Illness. For 13–16-year-olds. ARAFMI (Western Australia) (Association of Relatives and Friends of the Mentally Ill), 275 Stirling Street, Perth 6000, Western Australia. Handle with Care: A Workbook about Mental Illness for 8–12-year-olds. ARAFMI (Western Australia) (Association of Relatives and Friends of the Mentally Ill), 275 Stirling Street, Perth 6000, Western Australia. Is There Anybody Out There? Community Focus Comix, Issue No. 1. Community Focus, PO Box 1330, Maroochydore 4558, Queensland. This comic-style booklet is based on events and experiences of young people who have a parent with mental illness. The young people assisted in preparing the booklet, which provides information and ideas in an easy-to-read format. Jake’s Dinosaurs. Anne Sved Williams (1996). Helen Mayo House, Women’s and Children’s Hospital, South Australian Mental Health Service, South Australia, PO Box 17, Eastwood 5063, South Australia. A picture-story book written for children aged 3–6 years who have a mother with severe mental illness. Joe’s Diary. A SANE Guide for Young People. SANE Australia, PO Box 226, South Melbourne 3205, Victoria, e-mail: [email protected]. A new guide for young people with a parent or someone else close to them who has a mental illness. Nothing to be Ashamed Of: Growing Up with Mental Illness in Your Family. S.H. Dinner (1989), Lothrop, Lee and Shephard Books, New York. Robby Rose and Monkey. Andrea Louis (1995) Helen Mayo House, Women’s and Children’s Hospital, South Australian Mental Health Service, South Australia, PO Box 17, Eastwood 5063, South Australia. A picture book for 3–6-year-old children; a boy’s mother develops postnatal depression after the birth of her second child.

Resources

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Understanding Mental Illness: For Teens who Care About Someone with Mental Illness. J.T. Johnson (1989) Lerner Publications Co., Minneapolis, Minnesota. You’re Not Alone. A SANE Guide to Mental Illness for Children. SANE Australia, PO Box 226, South Melbourne 3205, Victoria, e-mail: [email protected]. A book for children aged 6–12 years who have a family member or other person close to them with a mental illness. SIC: A Resource for Secondary Teachers (And Others Who Work with Young People). Villa Maria Carer Services, 13 Fernhurst Grove, Kew 3101, Victoria, tel. (03) 9854 5122. A booklet and CD about the issues facing young carers in families in which someone has a mental illness.

Books and resources about parenting, families, and mental illness Assessment of Parenting: Psychiatric and Psychological Contributions. P. Reder & C. Lucey (eds) (1995), London: Routledge. Child Protection and Adult Mental Health: Conflict of Interest. A.Weir & A. Douglas (eds) (1999) Butterworth/Heinemann: Oxford. Childhood Depression: Why is it Hard to Understand? F. Thomson-Salo, J. Re & R. Wraith (eds) (2001) Department of Child Psychotherapy, Royal Children’s Hospital, Flemington Road, Parkville 3052, Victoria. Children Caring for Parents with Mental Illness: Perspectives of Young Carers, Parents and Professionals. J. Aldridge & S. Becker (2003) Bristol: The Policy Press. This book draws on primary research data collected from forty families to describe the experiences of the children and their parents. Children of Parents with Mental Illness. V. Cowling (ed.) (1999) Melbourne: Australian Council for Educational Research. Children’s Needs—Parenting Capacity: The Impact of Parental Mental Illness, Problem Alcohol and Drug Use and Domestic Violence on Children’s Development. H. Cleaver, I. Unell & J. Aldgate (1999) London: The Stationery Office, www.thestationeryoffice.com. Fractured Attachments: The Foundation of Longterm Difficulties. F. Thomson-Salo, J. Re & R. Wraith (eds) (2002) Melbourne: Department of Child Psychotherapy, Royal Children’s Hospital, Flemington Road, Parkville 3052, Victoria.

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Hard Words video, ARAFEMI, Suite 1, 1091 Toorak Road, Camberwell, Victoria 3124, e-mail [email protected]. Hard Words is an educational resource for children, carers, families and those who work with them. It focuses on the issues and experiences facing children who have a parent with a mental illness. Parental Psychiatric Disorder: Distressed Parents and their Families. 2nd edn, M. Gopfert, J. Webster & M.V. Seeman (eds) (in-press) Cambridge University Press, England. Includes clinical issues, intervention strategies and service provision, with personal accounts of parents and family members highlighting key issues. Parenting Well When You’re Depressed: A Complete Resource for Maintaining a Healthy Family. J. Nicholson, A.D. Henry, J.C. Clayfield & S.M. Phillips (2001) Oakland: New Harbinger. Parents who have experienced depression have actively participated in the preparation of this resource guide. First-person accounts give examples of difficult situations and the strategies parents have used to overcome them. Patients as Parents: Addressing the Needs, Including the Safety of Children Whose Parents have Mental Illness. The Royal College of Psychiatrists, Council Report CR105 (2002), www.rcpsych.ac.uk/publications/cr/index. The report provides a brief and practical summary of key issues, and informs psychiatrists of how they may help where people with a psychiatric disorder have, or care for, dependent children. Young Carers and Their Families. S. Becker, J. Aldridge & C. Dearden (1998) Blackwell Science: Oxford. This book examines how young carers are perceived, their situation, rights and needs, and effects of caring on their health and wellbeing. The book is written in a United Kingdom context, but work in other countries is included, including Australia. The book includes all young carers, not specifically children of parents with mental illness. The Alice Guide to Psychosis: An Interactive, Illustrated Explanation of Psychotic Illnesses, for All Ages. SANE Australia, PO Box 226, South Melbourne 3205, Victoria.

Resources

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Websites AusEiNet (Australian Network for Promotion, Prevention and Early Intervention for Mental Health) http://auseinet.flinders.edu.au AusEiNet informs, educates and promotes good practice in a range of sectors and the community, about mental health promotion, prevention, early intervention and suicide prevention across the lifespan. Champsworldwide: www.champsworldwide.com This is a website for children and young people arranged according to age groups, where they can read about mental health issues and enjoy some interactive games. Champsworldwide was developed by Vicki Cowling, Rose Cuff and Vrinda Edan, Eastern Health Mental Health Program, Victoria. COMIC (Children of Mentally Ill Consumers): http://howstat.com.au/comic COMIC comprises a group of adults in Adelaide, South Australia, who share a common concern for children of parents with a mental illness. COMIC advocates for the rights of children and the ill parent, and has developed a ‘Supporting our Family’ kit. COPMI (Children of Parents with a Mental Illness and their Families) www.aicafmha.net.au/copmi The COPMI project is a national initiative, funded by the Australian Government, to develop guidelines and principles for services and workers, and complementary resource materials for services/workers, parents and young people, in circumstances in which parents have a mental illness. The COPMI project is administered by AICAFMHA (Australian Infant, Child, Adolescent and Family Mental Health Association), in Adelaide, South Australia. The project has established a discussion e-list through which initiatives can be promoted, questions asked and achievements shared. The e-list can be accessed by subscribing through www.aicafmha.net.au/copmi/. PATS (Paying Attention to Self): www.rch.org.au/pats PATS is a peer support program which aims to provide opportunities for young people who have parents with mental health issues to share their experiences and be supported by other young people in a situation similar to their own. PATS is a community program of the Centre for Adolescent Health in Melbourne, Victoria.

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Index adolescence 57 evidence of risk factors 64 prevention strategies 65 protective factors 66 children, entering out-of-home care 119 assessment 125 early intervention 123 needs 122 Stargate program 122 children, talking with 41, 45, 49, 123 difficulties 42 engaging parents 43 explaining mental illness 52 of refugee and immigrant families 175 psychological needs 157 when parents are hospitalised 46 who should talk with children 48 cultural considerations 167 conflicting cultural demands 176 explanatory models of mental illness 172 family perspectives on parental mental illness 171 gathering culturally relevant information 170 vulnerability 179

genetics 5 counselling 12 explanations for children 12 phenocopies 8 psychiatric genetics 5 risks 6, 7 twin studies 10 infants 17 attachment 19 brain development 18 care for infants and mothers 17–33 effects of maternal mental illness 26 parenting with bipolar disorder 22 borderline personality disorder 26 depression 23 schizophrenia 21 substance abuse 24 long-term out-of-home care 149 child welfare system 160 historical context 151 permanency planning principles 152 planning long-term care 154 psychological needs of children 157 peer support 193 Champs groups 198–201 PATS groups 201–207 programs 194–197

Index

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permanent care 131 birth parents 137 childrens’ experience of 134 contact/access visits 140 decision-making processes 135 legal context 131

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permanent carers 137 recruitment of carers 139 psychological revisionism 213 background 217 child development assessment 223

Personal and Clinical Perspectives

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Children of Parents with Mental Illness: Personal and clinical perspectives looks at the insights and experiences of children and adults who have grown up with a parent with mental illness. The personal accounts show the need for professionals to think about all family members in order to meet the needs of the children involved. This highly recommended text is a comprehensive and relevant book for anyone concerned with the mental health and wellbeing of children and families. It is a resource intended for mental health professionals, psychologists and social workers. The personal narratives are complemented by chapters written by clinicians and practitioners. These chapters offer well-researched and current information in the area of the authors’ expertise. Issues covered include: • the genetics of mental illness • talking with children to allay anxiety and give age-appropriate information • assessment of children in crisis • the value of peer support activities • the needs of children placed in out-of-home care • cultural considerations in understanding mental illness • how our mental health care can fail the children of parents with mental illness

Vicki Cowling, a social worker and psychologist, is the editor of a previous, groundbreaking book in this series, Children of Parents with Mental Illness (ACER Press, 1999).

ISBN 0-86431-473-6

9 780864 314734

Australian Council for Education Research

Children of Parents with Mental Illness 2 PERSONAL AND CLINICAL PERSPECTIVES

Edited by Vicki Cowling

Some of the contributors have international reputations in their specialist areas, several are participants in the national Children of Parents with Mental Illness (COPMI) Project as members of the reference or consultation groups, and some are adult children of a parent with mental illness.

Children of Parents with Mental Illness 2

PERSONAL AND CLINICAL PERSPECTIVES

PERSONAL AND CLINICAL PERSPECTIVES

Children of Parents with Mental Illness 2

Edited by Vicki Cowling