Negotiating identities: A narrative inquiry into the experiences of people living with HIV in Kenya.

This paper-based dissertation is a culmination of my personal journey of inquiring into the experiences of people living with HIV (PHAs), a curiosity that began as a Registered Nurse caring for dying clients who were HIV positive at a hospital in Kenya in 2003. At the time, witnessing PHAs die in large numbers, due to the unavailability of life-saving medications was heartbreaking. In my work as a Registered Nurse, I cared for Solomon, whose HIV story, though silenced, was atypical compared to the stories of other PHAs on the unit I worked. As a patient who exhibited affluence and considerable socioeconomic capital based on the number and nature of visitors he attracted to his bedside, I had many wonders about who he was. Furthermore, by asking us to conceal his HIV status from his family, I became more intrigued to what I perceived to be a paradoxical life. Intrigued by the silences, paradoxes, and complexities in Solomon’s experiences as a PHA, I embarked on a journey to Canada to pursue doctoral studies in nursing. This followed an invitation by Dr. Judy Mill and Dr. Vera Caine to join a national CIHR-funded project called A Clinical Mentorship of Canadian Nurses in HIV Care. My involvement in this project as a research assistant greatly enhanced my understanding of ways to engage PHAs’ experiential knowledge in HIV education, research, and care in line with the Greater Involvement of People living with HIV/AIDS (GIPA) principles. After 3 years of doctoral studies in Canada, I returned to Kenya to carry out doctoral fieldwork, aware that the availability of antiretroviral medications in Kenya has significantly changed the HIV landscape. HIV infection was no longer fatal. Instead, it is now being treated as a chronic illness. This narrative inquiry study was based at Utumishi , an AIDS Service Organization (ASO) that provides care and support to PHAs in western Kenya. Luanda, Atoti, Nelly, and Estero, who became part of this study, continue to be both clients and HIV lay workers at the ASO. In inquiring into experiences of living with HIV, the social, political, economic, and personal implications of living with HIV became explicit. The participants’ narrative accounts, composed from informal and formal conversations, reflections and field notes, were negotiated with the four participants. To honor their stories, these narrative accounts became dissertation chapters. The moral and ethical implications of engaging in narrative inquiry become even more explicit to me with the evolution of my positioning as a researcher. At the start of the research, I let the research puzzle dictate my engagement with participants. With time, as the participants increasingly became involved in the inquiry, I began to shift and see my participants as co-researchers. This shift was occasioned by my willingness to be flexible and to travel to participants’ worlds in order to attend to their experiences differently. Through a sustained relational commitment to the inquiry, I comprehended how political and social discourses that story HIV as a chronic illness shape the experiences of people living with HIV. Bury’s (1982) concept of illness as a biographical disruption, which has been used to describe the social process of experiencing an illness, could not fully account for the experiences that participants lived. Further, in attending to experiences of living with HIV as HIV lay workers, I explored how the GIPA principles are taken up in a donor-funded ASO. In utilizing Lindermann-Nelson’s (1995) concept of found and chosen communities, complexities of paid and unpaid HIV work were realized. In the last chapter of this dissertation, I take a turn to consider the significance of this research and what it contributes to the body of knowledge.

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