“Illness Narratives without the Illness: Biomedical HIV Prevention Narratives from East Africa”.26/6/2024 Johnson-Peretz J, Atwine F, Kamya M, et al. (2024). Journal of Medical Humanities. "Most of my friends are older than me; they guide me on how teenage life is. Therefore, one of them married a lady who was HIV-positive, but he did not know. Initially, they were using condoms until they went for the test and they found out that the lady was HIV-positive and he was HIV-negative. So the provider advised him to take PrEP then he enrolled to it. He is the one who told me how effective the drug is." (Quest genre, seeking advice. 19 y.o. male, Kenya) Synopsis: We present seven narratives concerned with biomedical illness prevention, gathered through semi-structured, in-depth interviews during a dynamic choice HIV prevention intervention study, thereby complicating the notion of an illness narrative by focusing on narratives about preventive care while connecting them to contextual African narrative genres.
Key Findings: Our participants deployed several identifiable patterns in their illness-prevention narratives, each of which relates to contemporary African narrative genres such as the trickster, the quest, and the tragic hero. The narratives describe social roles and relationships and how they influence people navigating prevention. Recommendations: Illness prevention narratives give public health researchers scripts which resonate with the moral and cultural sensibilities of a given population. With the introduction of HIV prevention options like PrEP, the uptake of cervical and anal cancer prevention through HPV vaccines, and the increased visibility of anti-vaccination groups, we argue it is time for public health officials to discuss the narratives and counter-narratives which concern not only risk but also the prevention and elimination of suffering and disease.
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Johnson-Peretz J, Onyango A, Gutin S, et al. (2024). Journal of the International Association of Providers of AIDS Care (JIAPAC). “I personally come from a polygamous family – we are two wives. I may be aware of my partner's status and in fact, we have all tested together the three of us, but this does not give me the leeway to monitor each one's movement and any of them may mess up [have an extra-marital affair] at any time. That is why I opted to use PrEP.” (24 y.o. female, (wife order unknown), Kenya) Synopsis: Using 27 in-depth, semi-structured qualitative interviews with participants in two studies in rural Kenya and Uganda, we analysed challenges and opportunities that polygamous families presented in the diagnosis, treatment and prevention of HIV, and provider roles in improving HIV outcomes in these families.
Key Findings: Overall, prevention methods seemed more justifiable to families where co-wives live far apart than when all members live in the same household. In treatment, diagnosis of one member did not always lead to disclosure to other members, creating an adverse home environment; but sometimes diagnosis of one wife led not only to diagnosis of the other, but also to greater household support. Recommendations: The complex families produced by polygamous marriage customs give rise to additional considerations for healthcare providers and public health messaging around HIV care. Cultural leaders such as imams and community elders can play a role in normalizing conversations about testing before marriage and discuss HIV treatment and prevention within polygamous families. They can persuade the community that it is the whole family's responsibility to protect one another and foster their health. Respected community leaders can also discuss HIV prevention and treatment with mothers-in-law so as to minimize or eliminate PrEP stigma towards their daughters-in-law. |
AuthorJason Johnson-Peretz is a medical anthropologist and qualitative research analyst for multinational projects in rural East Africa that, through person-centred models of care, aim to improve community health and end AIDS in the region. Archives
October 2025
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