Copyright is owned by the Author of the thesis. Permission is given for a copy to be downloaded by an individual for the purpose of research and private study only. The thesis may not be reproduced elsewhere without the permission of the Author. "In Her Shoes" The Experience Of Mothers Living With Mental Illness A Thesis presented in partial fulfilment of the requirements for the degree of Master of Social Work At Massey University Palmerston North New Zealand Lesley Ann Watkins 2007 ABSTRACT This thesis presents a study of the views and experiences of a small group of New Zealand mothers living with mental illness. It is a qualitative study, the purpose of which is to explore the interface between parenting and mental illness through in­ depth interviews and to draw suggestions from these experiences for service development. Utilising a perspective which is influenced by a combination of recovery, feminist and Kaupapa Maori research philosophies, the intent of the study is to hear and reflect upon these stories through a collaborative process. The findings reveal similar themes to those from international studies. The participants emphasize the value of motherhood, seeing parenting as a tool for recovery and a way to increase self-esteem. Stigma and discrimination, especially self stigma, the internalised sets of beliefs about people experiencing mental illness, still affect women's lives, leading most of the participants to experience a pervasive fear around the loss of their children on account of their mental illness. Finally, mothers spoke of the stresses brought about by living in an environment often characterised by poverty and isolation. The main recommendations are for family-focused, community-based services which utilise early intervention approaches. The need for more extensive, flexible, practical support services and support for family/whanau are also highlighted. The role of trauma in the lives of the mothers interviewed and the need for access to appropriate treatment is emphasized. Finally, the lack of concrete data related to the numbers of parents living with mental illness is underlined and it is suggested that the latest mental health information system incorporate details about parenting arrangements. The findings of the research raise issues about the ability of present-day mental health services to fully meet the needs of families living with mental illness. Furthermore, it is argued that the compartmentalisation of mental health and child welfare services leads to a lack of a cohesive approach to the complexity of the lives of both parents and children in families with mental illness. In spite of less than optimum services, the strength and resilience of the mothers interviewed is a demonstration of the success of the recovery philosophy. I II ACKNOWLEDGEMENTS To the mothers who agreed to take part in the research: the work of any individual is based on the support of many. The experience of listening to your stories has been both humbling and inspiring. To my supervisors, Dr carole Adamson and Barbara Staniforth, for their wonderful support and encouragement especially during times of thesis paralysis. To my family, especially my mother, and my friends for being there when I needed you. In memory of my father, Baden Watkins (1929 - 1998) III IV GLOSSARY A number of terms are used interchangeably in this document to describe people with experience of mental illness. Among people with experience of mental illness there is no consensus on a preferred term. Here are some which are used in this study: consumer, service user, tangata whaiora (a Maori term which translates as "people seeking well-being"), people living with mental illness, people experiencing mental illness, client and patient. A.C.C. Aotearoa New Zealand Aro ha CAM HS COPMI/COPMIA CYFS D.E.S.N.O.S. Hapu Hauora Hinengaro Hui Iwi Kai Kaiwhakahaere Karakia Karanga Kaumatua/kuia Kaupapa Kaupapa Maori Kawa Koh a Accident Compensation Corporation of New Zealand Bicultural term for New Zealand Love Child & Adolescent Mental Health Services Children of Parents with Mental Illness/Children of Parents with Mental Illness & Addiction. Child, Youth & Family Service Disorder of extreme stress not otherwise specified Sub tribe Health Mind Meeting Tribe, people Food Manager, leader Prayer Call Elders Policy Policy/procedure from Maori perspective/Maori philosophy Protocols, process Gift v Mana Mauri Ora Marae Matauranga Maori Mental Health Services Mood disorder NGO Pake ha PTSD Rangitiratanga Tangata Whenua Tapu/Noa TeReo Te Tiriti (0 Waitangi) The Treaty of Waitangi Tikanga Tinana Tino Rangitiratanga Authority, power, respect Essence of life The meeting place of the whanau/hapu, where decision-making and other family and community events occur Traditional knowledge Organisations whose primary function is the provision of care, treatment, support and education for recovery to people with mental illness or mental health problems. Includes illnesses where there is a major disturbance in feeling states. Such feeling states can include, despair, depression, elation or anxiety. Often these feeling states are accompanied by an over or under­ abundance of energy. Major depressive disorder and bipolar affective disorder are examples of mood disorders. Anxiety states can also be present alongside the conditions detailed above or be disabling conditions in their own right. Non-government organisation. New Zealand people of European ethnicity. Post traumatic stress disorder Authority of, control (of) The indigenous people of Aotearoa Sacred, prohibited The Maori language The founding document of Aotearoa/New Zealand that defines the terms of relationships between Iwi Maori and the Crown Correct procedure, method, practice Body Self determination VI Treatment Waiata Wai Whaikorero Whakatuia Whanau Whanaungatanga Whare Wairua WINZ Specific physical or psychological assistance provided by a health professional to reduce (mental) illness and assist recovery. Song, traditional chant Water Speech Integration (extended) family the process of establishing and maintaining connection between people house, specifically at times, the wharenui (meeting house on the marae) spirit Work & Income New Zealand VII ABSTRACT ACKNOWLEDGEMENTS GLOSSARY TABLE OF CONTENTS CHAPTER 1 INTRODUCTION 1 CHAPTER 2 "THE BIGGER PICTURE" FROM ASYLUMS TO RECOVERY 5 2.1 Introduction 2.2 Motherhood and Mental Illness 2.3 Asylums, The Medical Model And Chronicity 2.4 Deinstitutionalization and the Rise of Recovery 2.5 Strengths Model in Mental Health 2.6 The Bio-Psychosocial Approach To Mental Health 2. 7 The Stress-Diathesis Model 2.8 Tirohanga Maori: Maori Health Perspectives 2. 9 Conclusion 5 6 7 9 13 14 16 18 22 CHAPTER 3 WOMEN'S MENTAL HEALTH: GENDER TO MOTHERHOOD 23 3 .1 Introduction 23 3.2 The Historical Lens 3.3 The Gendered Experience Of Women In Mental Health 3.4 Trauma's Implications For Mental Health 3.5 Being a Mother 3.6 Attachment 3.7 Risk And Resilience: The Social Construction Of Childhood 3.8 Children of Parents with Mental Illness and Addiction: (COPMIA) 3. 9 Conclusion CHAPTER 4 WHAT DO WE KNOW ALREADY? 4.1 Introduction 4. 2 The Process 4.3 Overview of the Literature 4.4 Theme 1: Invisibility 4.5 Theme 2: Losses - Custody/Access to Children 4.6 Theme 3: Stigma and Discrimination 4.7 Theme 4: Poverty 4.8 Theme 5: The value of Parenthood 4.9 Conclusion 23 25 28 30 31 34 36 37 38 38 38 39 44 46 48 49 50 51 CHAPTER 5 RESEARCH DESIGN AND METHODS 52 5.1 Introduction 52 The Personal Lens 52 The Qualitative Choice 54 Critical Theory 55 Maori Models of Research 56 Feminist Models 59 Conclusion 60 5.2 Research Methods 61 Data Collection 61 Participants and Recruitment 62 Ethical Issues 64 Minimisation of Harm 64 Privacy and Confidentiality 66 Informed Consent 66 Cultural and Social Responsibility 66 Data Analysis 67 5.3 Conclusion 68 CHAPTER 6 FINDINGS 69 6.1 Introduction 69 6.2 Description Of The Participants 69 6.3 How Does Mental Illness Affect Being A Mother? 70 6.4 The Impact Of Illness On Motherhood 70 6.5 The Effect Of Mental Illness On Relationships With Children 72 6.6 The Effects Of Stigma And Discrimination 74 6.7 The Fear Of Loss Of Contact Or Custody Of A Child 76 6.8 How Does Being A Mother Affect Your Mental Illness Or Mental Health? 78 The Negative Effects 78 The Positive Effects 79 6.9 The Context Of Parenting With A Mental Illness 80 6.10 What Has Helped You As A Mother With Experience Of Mental Illness? 81 Support 82 Education/Information/Reflection/Empowerment 83 6.11 What Suggestions Do You Have For Services/Service Improvements? 84 Practical Assistance 84 Family-Focused Services Education and integration Support Primary Mental Health Focus 6.12 Conclusion CHAPTER 7 DISCUSSION 7.1 Introduction 7.2 Adequate Data Capture 7.3 The Structure And Delivery Of Mental Health Services 7.4 The Content of Mental Health Services Someone To Talk To: Parents And Children Trauma-informed Services Practical Services 7.5 Stigma and Discrimination 7.6 Support - family/whanau 7.7 Recovery And Strengths-Based Influences On Research 7.8 The Strengths Of The Study 7.9 Limitations Of The Study 7.10 Reflections On The Study 7.11 Conclusion CHAPTER 8 CONCLUSION: TRANSLATING FINDINGS INTO ACTION 8.1 Introduction 8.2 Recommendation One 8.3 Recommendation Two 8.4 Recommendation Three 8.5 Recommendation Four 8.6 Recommendation Five 8.7 Recommendation Six REFERENCES APPENDICES APPENDIX I ADVERTISEMENT APPENDIX II INFORMATION SHEET APPENDIX III CONSENT FORM 85 86 86 87 87 88 88 89 91 94 94 96 98 99 101 103 104 105 106 107 109 109 110 110 111 112 113 113