My work is to inhabit the silences with which I have lived and fill them with myself until they have the sounds of brightest day and the loudest thunder. (Lorde, 1980, p. 46) First Episode Psychosis: The Experience of Parent Caregivers by Jane Hamilton Wilson A Thesis Submitted to the Faculty of Graduate Studies and Resesarch in partial fulfillment of the requirements for the degree of Doctor of Philosophy Faculty of Nursing © Jane E. Hamilton Wilson Fall, 2012 Edmonton, Alberta Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission. DEDICATION To the silent heroes that live among us and to the loving families that support their recovery, may we all hold the hope that their heroism and courage might be revealed and embraced without prejudice. May love and understanding eventually eliminate stigma. ABSTRACT Psychosis is a serious but treatable psychiatric disorder, characterized by changes in perceptions, thoughts, feelings, beliefs and behaviours. Each year in Canada, as many as 10,000 young people between the ages of 15 and 30 years of age, may experience their first episode of psychosis (CMHA, 2005). Certainly the emergence of psychotic illness is a distressing and confusing time, not only for young persons experiencing these perplexing changes but also for their parents. The family and in particular the parents, play a critical role in early intervention for psychosis, both as a vehicle for early identification and treatment, and as a supportive context for recovery. An interpretive phenomenological inquiry was undertaken to answer the primary research question: How do parent caregivers experience first episode psychosis in their young adult child? The purpose of this study was twofold: 1) to understand the lived experience of parents involved in caregiving for a young son or daughter who is experiencing first episode psychosis (FEP) and 2) to utilize the research Pathway and Hermeneutical Principles of Research (HPR) originally formulated, tested and amplified by Dr. Sherrill Conroy (2003) as the guiding method for accomplishing research predicated on Heideggerian philosophy. In this Heideggerian interpretive phenomenological study, the meaning and experiences of nine parent caregivers with a young adult son or daughter with first episode psychosis were explored. Data were collected through conversations with mothers and fathers whose young adult children were involved with a specialized early psychosis intervention program in southwest Ontario. The nature of the meaning of the parent caregivers’ experience led to uncovering four distinct stories: a story of Protection; a story of Loss; a story of Stigma; and a final story of Enduring Love. The findings of this inquiry help to illuminate and bring awareness to what it means to be parents of a young adult child newly diagnosed with psychotic illness. I illuminate how healthcare providers and nurses in particular can have more discretion, insight and discernment in clinical approaches with parent and family initiatives within early psychosis intervention programs. The findings of this inquiry may also serve to shape future policies, which will recognize and affirm the strengths and resilient capacities of parent caregivers. ACKNOWLEDGEMENTS It is a very difficult task to begin to thank and appropriately acknowledge the many people who have contributed to the completion of this research project. First as a project which focuses upon coming to understand the meaning of parent caregiver’s experiences of first episode psychosis in a loved son or daughter, I will be forever grateful to the nine courageous and resilient mothers and fathers who agreed so generously to share their stories with me. Without their generosity and trust, their willingness to take a chance and their desire to help others, this project would not have been possible. To all of them I owe a great debt and I hope they know how deep is my gratitude. I sincerely hope that their time and energy to participate will contribute to thoughtful consideration of how healthcare services might better meet their needs. Secondly, I must thank the members of my committee. Dr. Sherrill Conroy, my supervisor, who provided able guidance in all stages of this project. I appreciate her keen interest in this work, her generosity in sharing her expertise and her seemingly endless patience with me. She consistently encouraged me to fly. To my other committee members Dr. Rhonda Breitkruse and Dr. Brenda Cameron, I appreciate your feedback, generosity and the wisdom that you have added to this research journey. I wish to also acknowledge my former colleagues at the EPI program. I am particularly grateful to Heather Hobbs, Jean McNiven and Dr. Suzanne Archie for their friendship and support. Their unfailing belief in me provided much needed motivation at times. Gratitude is also expressed to my many friends and colleagues at Conestoga College who directly or indirectly contributed to this work. The support of friends is indeed a gift. I feel especially indebted to my friend and peer at U of A, Dr. Nicole Pitre who accompained me throughout this lengthy process. Her support, comaradirie and friendship has meant so much. By far the deepest debt of gratitude is owed to my loving family, past and present. For the renewing nourishment of their unconditional love, understanding and encouragement I am forever grateful. To my sister and best friend, Susan Hamilton, I remain humbled by the way you love, and the unselfish way you live your life. The courage you demonstrated when facing cancer for the second time speaks to the depth of your character and the light and spirit within your soul. You have and will always continue to inspire me. I am so lucky to have you in my life and by my side. To my brother-in-law, Ross Fair, I have appreciated your always being at hand for me. I am also indebted to you for lending me Susan’s time. Her accompaniment allowed us to have “sisters time” in which to be playful, explore new sites and find much needed respite. I must also acknowledge the love and support of my two amazing daughters, Kate Wilson and Jennifer Wilson. Being your mom is by far my life’s most wonderful and treasured gift. You always make me proud. Finally I must acknowledge the love of my husband Rod Wilson, who lived this research project along with me on a daily basis. You have always been my beloved and my friend. You embody the heroic courage and determination to live life’s possibilities to the fullest while coping with unpredictable moments of illness with both humour and tenacity. You inspire hope in all who know you. I am humbled to be your partner. And finally at the risk of being perceived of as potentially silly, I must also acknowledge the faithfulness and accompaniment of my old dog “Charlie”. I may have rescued you but in another way, you consistently rescued me by insisting I keep your schedule and take time out for a walk or a car ride. Table of Contents DEDICATION ............................................................................................................................... I ABSTRACT ................................................................................................................................. II ACKNOWLEDGEMENTS ........................................................................................................ IV CHAPTER ONE ........................................................................................................................... 1 COMMENCING A JOURNEY ........................................................................................................................ 1 Context of the Inquiry ......................................................................................................................... 1 New early treatment approaches promise enhanced recovery ....................................... 4 First Episode Psychosis: The experience of parents .............................................................. 6 Aim of this Inquiry ............................................................................................................................... 9 Phenomenon of Interest .................................................................................................................... 9 Coming-to-the-question .................................................................................................................. 10 My Situated Context .......................................................................................................................... 11 Rationale and Significance of the Study .................................................................................. 13 My Foundational Assumptions ..................................................................................................... 14 Definitions of Key Terminology Used in this Study .............................................................