The University of Hull Effects of compulsive hoarding and the search for help as experienced by one family member and one researcher Being a thesis submitted for the degree of PhD in the University of Hull By Timothy Paul Buescher (BSc) (May 2018) 1 For Sarah, Peggy and Ted 2 Acknowledgements There are a lot of people to thank for the existence of this work. So many wonderful people educated me, nurtured me, rescued me from myself and had more patience than ought to be expected of anyone with me going back long before I could ever have conceived of writing a thesis. I can’t name them all here and they wouldn’t be reading this but they all are owed. The idea that I could and perhaps should write a thesis came from one of the most dynamic and inspiring forces I have ever met. Judith Dyson not only saw me through the toughest of times towards the end of my BSc but went on to continue exemplifying the patient, non-judgemental stance through an unpredictable, unorthodox and sometimes uncertain doctoral path. In suggesting that I approach Fiona Cowdell to accompany us on this path, you showed how well you knew me despite (at the time) our having not known each other all that long. Fiona, you have given me so much encouragement in taking the route less travelled and have proved to be a repository of all manner of valuable experience and knowledge. For supervisors I couldn’t ask for more. Thankyou. As mentioned above, there has been some turbulence throughout the process of completing this work and Sarah, Peggy and Ted have borne the brunt of it in temperamental days, absent days and long monologues on subjects which were frankly not of interest or value to you. Long before this began, Sarah collected the pieces of me in her arms and gently brought them to her. For all those worn out ears, days without and shortened weekends and for continuing belief in me, thankyou. Like this piece of writing and those featured in it, I am a composite of eclectic parts. Some of these elements come from the diligent nurturing of parents who displayed a love of learning and an enthusiasm for facilitating the development of others in the most selfless way. Mum and Dad, thankyou for starting me off so well and for not losing hope or patience when I really tested you so many times over so many years. And thankyou to Angie, my mother in law who has provided so much help in so many ways which has made completing this work a possibility. Most importantly, there could be no thesis if there was no research and this was looking very likely in October 2015 when I met an extraordinary and courageous woman who was prepared to collaborate on this project. The openness, insight and inquisitiveness and tenacity of Tracy Pallett have driven this project as much as anything else. Tracy thankyou so much and thanks to your family and I look forward to our next project 3 Abstract This thesis reports a shared journey within a personal one. I intended to understand help-seeking motivation in family members of compulsive hoarders. I learned something about myself. An integrative review of family experience of hoarding revealed themes of quality of life; shattered families; rallying around and lack of support, which was the central theme. This begged the question: What sources of help do family members of compulsive hoarders seek and why? A family-group collaborative design was proposed but developments in recruitment produced a situation of recruiting and being recruited simultaneously by a co- researcher expert by experience engaged in help-seeking. Negotiations around the collaborative workings of the project produced a cycle of action and reflection similar to co-operative inquiry. Analysis consisted of a free association exercise conducted by both co-researchers and dialogical narrative analysis by me alone. Results were triangulated with field notes including reports of interviews with other family members. Findings from these exercises included a focus on my co-researcher’s role within the family and within the research team; identity; relationships within and outwith the family and tolerance of uncertainty. My co-researcher’s prolonged and wide-ranging help-seeking led to her discovering that hoarding had been included in the fifth edition of Diagnostic and Statistical Manual of the American Psychiatric Association (APA) (DSM-5), and this opened the possibility of treatment. Initially stating she preferred to focus on large scale projects as a way of avoiding her family situation, exploration of the experience from a different perspective unexpectedly allowed for a re-appraisal of the situation and its effects despite little change in circumstances. “The answer is in the exploration”, as Tracy put it during analysis. At the end of this project, I found myself not ready to let go. I also found myself unsure about my own identity. I explore why through autoethnographic writing, examining how the same processes which inadvertently benefited my co-researcher helped me to develop a new story for myself in relation to my status as a registered mental health nurse transitioning from psychosocial practitioner to mental health nurse academic. Building on our work together, this work has produced further arguments for the use of autoethnographic methods in mental health research and has made a case for flattened structures and slow approaches in research relationships and by extension in other mental health work. In addition, we have uncovered a helpful bespoke response to compulsive hoarding in a relative which employs aspects of research and therapy. 4 In considering these issues I suggest a model for mental health nurse practice, education and research which understands evidence-based practice as a situated, narrative exercise with a broad range of influences from other disciplines and a requirement to proceed from a critical standpoint. 5 Foreword Perhaps what you are reading here is “a blend of observation with participation and rationality with altered states of consciousness”? That would make it Gonzo ethnography, according to Tedlock (2011). Of course, if I sat down and said to myself (and then wrote on my ethics application) “I propose to explore family experience of compulsive hoarding through Gonzo ethnography” it would be ludicrous. Whilst the form appears to me to be a great means to achieve reflexivity, engagement and evocative accounts, how could it possibly be decided prior to commencing the study that this was the most appropriate way of doing this? I knew I wanted people to feel something when they read or saw my work on hoarding but the “how” part was a combination of intuition and co-operation. The participants and the data shaped this. The experience dictated it. This text recalls the development, evolution or emergence of a method through the twists and turns of a doctorate the initial intent of which was to explore the experience of family members of compulsive hoarders. What was initially intended as a particular type of collaborative project went through developments which retained the collaborative element but ended in an autoethnographic reading of events. It recalls the development of a researcher, a collaborator (or participant, if you prefer), a family and a problem. As such, it employs stories to give its accounts. What makes a story? Characterisation, plot, a beginning, middle and end? Using story enables development of a common language and accessibility of the text to a greater audience, principles of performative social science (Jones, 2010). It also creates an evocative account which aims at producing verisimilitude for the reader. Not “the Truth”, but true-to-life. Plausible. In talking about the development of characters or phenomena, Gergen (1991) identifies the interdependent and contingent nature of these concepts. The researcher, the participant, the phenomenon of interest are all contextually and relationally derived (Steier, 1991). From this social constructionist point of view, objectivity is unachievable and uncertainty is a continual presence. The tolerance of uncertainty is something which will return again and again in this thesis. The development of this tolerance is essential to the progression of the thesis. Certainty is not sought here. I couldn’t have said that at the outset but I can say it now and in saying it I can understand better some of the trials of the earlier stages (for instance, ethics). Relational ethics have loomed larger as the writing up has progressed. Certain things may have to remain unsaid as not everyone shares the desire to be included in this book and not everyone will want my portrayal of them. 6 Autoethnography employs the experience of the individual in pursuing understanding of sociological concepts and phenomena. In exploring my own becoming I am examining concepts of mental health, academic practice and research. The use of reflexive writing was an essential feature of the process throughout, which became more marked and significant as the project developed. Reflexivity refers to a process of examining and acknowledging one’s position within and interaction with the research. The researcher (co-researchers) influences the research (and each other) and vice versa. “Do not store up for yourselves treasures on earth where moth and rust destroy, and where thieves break in and steal” Matthew 7:19 7 Contents Acknowledgements ....................................................................................................................... 3 Abstract ........................................................................................................................................