An ethnographic study of women who use intravenous drugs, their subculture and interpretation of health: Implications for nursing. Cynthia Kitson Thesis submitted to the University of Ottawa in partial Fulfillment of the requirements for the Degree of Doctorate of Philosophy in Nursing Faculty of Health Sciences School of Nursing University of Ottawa © Cynthia Kitson, Ottawa, Canada, 2019 ii Acknowledgements I would like to thank my supervisor, Dr. Patrick O’Byrne, for the valued assistance and guiding wisdom which he has provided – from my application to the PhD Nursing program through to completion. His patient approach to developing my understanding and ability to do a critical ethnographic study, develop a critical focus, and express my words succinctly has been unendingly appreciated. Truly you have opened a world of knowledge to me. To my committee, Dr. D. Holmes and Dr. M. Gagnon, an enormous thank you for ensuring the research and paper were on track by providing relevant and important comments while also being so warmly encouraging. I would also like to thank my husband John and our son Dylan for the countless hours of time together that have been missed or rearranged so that I might work on my thesis writing, edits, and revisions. Thank you for your unwavering understanding and support. iii Abstract The following research was completed with an understanding that there is much to know about women who use intravenous drugs (WUID). The extant literature about the lives of people who use intravenous drugs (PWID) is mostly quantitative, highly androcentric, and primarily focused on HIV transmission. What is needed is information about the culture of WUID and the circumstances contributing to their poor health both from drug use and the conditions in which they live. The ethnographic study involved (a) collecting artifacts, including photographs taken by the women, (b) observing participants during some of their daily activities and primary healthcare interactions, and (c) face-to-face interviews with WUID. The results portray a life that closely resembles that which is known, but also the findings enable a lens into (a) the vicious circle associated with obtaining drugs and survival, (b) the violence, both systemic and personal, that homeless, urban-living WUID in Canada endure, and (c) the importance of “being clean” that directs much of their activities and presentation. From a theoretical perspective, the study enabled a deepened understanding of the importance of the continuum of cleanliness and how it interfaces with what the women believe. In summary, WUID have received unjust opportunities to care for themselves given the current laws and stigmatization that forces them to remain hidden, perform illegal activities, avoid discrimination, and fend for themselves in a world that perpetuates the hegemony of white middle-class Western peoples. The results provide a direction for healthcare in terms of WUID. Primarily there is a need to engage WUID in establishing what would work for them and thus incorporating peers in the process of initiating and maintaining services. Clearly established is a need for drug use to be decriminalized to allow WUID to gain recognition, to avoid criminality, and to re-enter the world that belongs as much to them as any other. iv Preface It is the intention of this thesis to present what women who use intravenous drugs (WUID) think and say, that is, their perceptions and understanding of themselves, through their own personal experiences. This nuanced understanding of what it is to be a WUID will be examined and contrasted using a lens that rejects the dominant hegemonic standpoint that WUID are less than desirable and not deserving of fair and equal treatment. The thesis thus enables another perspective to be entertained, one that embraces WUID without prejudice as included members of society. The binary conflict of what is known and what could be known about WUID has created a tension between the beliefs of those who fear, degrade, and dismiss WUID and those who approach them with humanity and empathy. Firstly, the study examines the literature for what is understood to be known about WUID. That the majority of this research employs predominantly quantitative methods highlights perceptions that WUID are little more than objects that can be enumerated and categorized, often without reference to their voice or agency. The literature review also demonstrates that research processes and the discussion of findings have often amalgamated findings from males and females who inject drugs into a single dataset. Thus, what becomes known is androcentric and dismisses the nuances of WUID. Identifying and articulating women’s voices is important. However, the methodology of the study presented herein, while qualitative and focusing exclusively on WUID, has also created conflict. Ethnographic studies employ several types of data collection: interviews, participant observation, and artifacts. To remain within the bounds of an ethnographic study, a researcher must report what participants say, what they do, and what they use. Here it was found that the women have internalized the idea that they are abject and marginalized within society. Using Kristeva’s words to describe this concept, WUID feel they are “conjoined to another world, thrown up, driven out, forfeited” (1982, p. 6). From the words, actions, photographs, and other artifacts of the women who participated in this study, it is evident they v have internalized this identity which has been embedded within them by a society that sees WUID as “out of place.” The women described experiencing a vicious circle of life events that challenged their survival and exemplified the paradox of what they considered living dirty and aspiring to be clean. While the language of “dirty” and “clean” is notably stigmatizing, I have opted to retain these words to be consistent with the participants’ statements. This usage does not mean I believe in such concepts, and in fact, my collegial clinical practice with WUID demonstrates that I hold no such views. I use this language to ensure an unfiltered presentation of the data. In the spirit of critical ethnography, it is nevertheless important to unravel the power structures and dynamics that enable these words – and thus the concepts, beliefs, and values that underpin them – to become known. And so, while the literature review and the findings may be viewed as presenting a negative image of WUID, it is these beliefs that are examined and reconstructed in my discussion of these findings. Certainly, I do not view WUID as deviant and disgusting; it is rather that they must be understood within the context of their lives, their challenges, and what is required for them to survive in a world that is hostile to them. The presentation here, including the language that is used (such as dirty and clean), is to understand these women as they see themselves and their lives. That they “do what they have to do” is a derivation of their experience, required and imposed by the structural violence of a society that rejects and abhors them. The assumption their identity has been “‘spoiled’” (Ettorre, 1992, p. 77) rendering them as “not a normal woman” (Ettorre, 1992, p. 77) requires a re-exploration and resetting, and this thesis offers this possibility. In my practice as a Nurse Practitioner to a population of homeless persons, including WUID, it is apparent that an acceptance of difference, an ability to come alongside the client, and an expression of respect illustrates some of the reasons that mainstream healthcare tactics fail. If one approaches healthcare with an attitude that requires compliance with “one size fits all” solutions and expectations of homogenous values and needs, it is inevitable that healthcare providers will miss the mark when they interact with and provide care for WUID. vi In summary, the values and beliefs that underpin this research are those that aim to help WUID find a place in this world, to be esteemed and cared for in the context of their lives. In contrast, what is generally accepted about WUID and what WUID believe the world thinks of them, having internalized these expectations, formulates the basis for the thesis and provides grounds to reject and reconsider what is known. It is important to establish at the outset that what could be misconstrued as accepting WUID as dirty and deviant is a reflection of the world’s general understanding of WUID and not the epistemology of this research. It is hoped that observation of the culture of WUID will enable a shift in the way healthcare is provided. vii TABLE OF CONTENTS CHAPTER ONE: INTRODUCTION .......................................................................................................... 1 RESEARCH PROBLEM ...............................................................................................................................2 WUID AND NURSING PRACTICE ........................................................................................................................... 5 GAPS IN THE CURRENT LITERATURE ....................................................................................................................... 5 RESEARCH QUESTIONS ............................................................................................................................7 STUDY PARADIGM, ONTOLOGY, AND EPISTEMOLOGY .....................................................................................7 ONTOLOGY ......................................................................................................................................................