Negotiating disease perceptions: experiences of eight HIV-positive women in Mombasa, Kenya

Chubb, Laura Ann (2014) Negotiating disease perceptions: experiences of eight HIV-positive women in Mombasa, Kenya. Masters thesis, Memorial University of Newfoundland.

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Abstract

Background: Despite the large amount of existing research focused on what individuals know about HIV and AIDS, few studies explore how women living with the disease acquire and interpret information about it. This study attempted to gain such knowledge about a small group of HIV-positive women through a lens of social constructionism, a theory stating that how an individual comes to know, is socially constructed through their interactions and interpretation/experience of those interactions. I used this theory to inform how multiple influences in the social environment generate ideas in communities about HIV-positive people and the disease. Methods: I collected qualitative data from a sample of eight HIV-positive women aged 20−25 living in Mombasa, Kenya. Combining both narrative inquiry and photo-voice methodologies, I used semi-structured interviews to solicit information about the women’s experiences, including their reactions to discovering their status and the perceived differences between their lives pre-and post-diagnosis. I also gave each woman a blank journal and camera, with which she had a month-long period to take and describe photographs illustrating what HIV and AIDS looks like in her life. I, along with two translators, when necessary, transcribed the data from both the interviews and photojournals. They translated data verbatim, first in Kiswahili, when necessary, and then English. I made regular field notes and kept a personal journal to delve further into the reflexive process. I used thematic analysis to analyze the interviews, as well as the captions and free writing in the women’s journals. I also used visual analysis to analyze the photographs for content, temporality, and meaning. The amalgamation of these methods provided a rich description of eight HIV-positive shared and differing experiences in negotiating new identities as people living with the disease. Results: These women’s identities have been shaped by their interactions and experiences of living with and learning about HIV and AIDS. Participants’ self-images did not always match others’ perceptions of HIV-positive people. However, the participants’ related similar experiences in having to cope with externalized and internalized manifestations of stigma related to AIDS. These negotiations determined whether the women chose to share or bear alone the burdens associated with the disease. Conclusion: Future research should capture the experiences of more individuals with a focus on how they form perceptions about themselves and the disease. Further understanding of this perception-forming process might help in the design of programs that address the sensitive discussions around sex, disease, and exclusion practices necessary to understand this chronic illness. Future research looking at individual experiences with HIV or AIDS could also help stakeholders learn how to create spaces for grassroots organizations working with community members to deliver culturallyappropriate education in communities vulnerable to infection. Such spaces could potentially allow individuals living with HIV to feel supported rather than morally stigmatized for their status. However, this study is only a first building block on the road to such programmatic goals. Given the small scale of this study more research is necessary to determine how broadly the lessons learned from these women’s experiences might be applied and used effectively in program development.

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