‛The virus stops with me’ : couples living positively with HIV in rural, eastern Uganda

Background: Historically people living with HIV (PLHIV) were left out of the center of the HIV prevention agenda in Africa, yet more recently greater attention has been placed on interventions that forefront PLHIV.

Aim: The overall aim of this thesis was to increase knowledge on the ways couples living with HIV prevent further transmission of HIV and live with health and dignity.

Methods: We identified four main research themes: HIV serostatus disclosure (I), altruism (II), reproductive behavior in the context of antiretroviral therapy (ART) (III), and HIV serodiscordance (IV). We designed, conducted and have reported the results around each of the themes. We used a combination of quantitative and qualitative methods for Articles I & II and purely qualitative methods for Articles III and IV. Participants were selected from two parent studies, both in Eastern Uganda. The first was a cross-sectional study of men and women living with HIV in Jinja District (Articles I & II) and the second was a longitudinal cohort of over 1,000 adults on ART in Tororo and Busia Districts (Articles III& IV). Article I assessed health and social predictors of HIV serostatus disclosure to sexual partners among 1092 adults and purposely selected 45 men and women for in-depth interviews on processes and outcomes of disclosure. Article II explored, among the same participants, concerns about HIV transmission, feelings of responsibility for HIV prevention and associated prevention behavior. Article III explored reproductive decision-making among 29 women and 10 of their partners. Article IV explored understanding of serodiscordance, couple communication and risk reduction, among 40 HIV serodiscordant couples, before and after a risk reduction intervention.

Findings: Disclosure of HIV serostatus among sexual partners was associated with being married, increased condom use and knowledge of partner‟s serostatus. Disclosure resulted in far more positive than negative outcomes and was associated with risk reduction behavior. The reasons adults living with HIV provided for their sense of prevention responsibility revolved around ethical and practical themes such as “leaving children orphaned”. Among couples where the women were living with HIV, on ART and were pregnant or had recently delivered a baby, most stated their pregnancy was unintentional and often occurred because they believed they were infertile. In the same study, women who did not get pregnant, mentioned reasons for their choice: poor health, financial strain, the counseling received, not wanting an HIV-infected infant and having already reached their desired family size. Among discordant couples, their current risk behavior was influenced by their understanding about discordance and couple relations /communication and mediated by gender norms around sexual and reproductive health, their past behavior, physical health and the intervention.

Conclusions: A couple‟s ability to communicate with each other has a powerful influence on their capacity to adopt risk reduction behavior. To be relevant and effective, interventions to reduce HIV transmission should be mindful of the cultural and structural influences on behavior and consider culturally relevant communication skill building as an integral element of prevention interventions, both with individuals and/or couples.

List of scientific papers

I. Rachel King, David Katuntu, Julie Lifshay, Laura Packel, Richard Batamwita, Sylvia Nakayiwa, Betty Agang, Frances Babirye, Pille Lindkvist, Eva Johansson, Jonathan Mermin, Rebecca Bunnell. Processes and Outcomes of HIV Serostatus Disclosure to sexual Partners among People Living with HIV in Uganda. AIDS and Behavior. (2008) Volume 12, Number 2, 232-243.
https://doi.org/10.1007/s10461-007-9307-7

II. Rachel King, Julie Lifshay, Sylvia Nakayiwa, David Katuntu, Pille Lindkvist, Rebecca Bunnell. 'The virus stops with me': HIV-infected Ugandans’ motivations to prevent HIV transmission. Social Science and Medicine. (2009) Volume 68: 749-757.
https://doi.org/10.1016/j.socscimed.2008.11.008

III. Rachel King, Kenneth Khana, Sylvia Nakayiwa, David Katuntu, Jaco Homsy, Pille Lindkvist, Eva Johansson, Rebecca Bunnell. 'Pregnancy Comes Accidentally - like it did with me': Reproductive Decisions among Women on ART and their Partners in Rural Uganda. BMC Public Health. (2011) Volume 11: 530.
https://doi.org/10.1186/1471-2458-11-530

IV. Rachel King, Nafuna Wamai, Kenneth Khana, Eva Johansson, Pille Lindkvist, Rebecca Bunnell. 'Maybe his blood is still strong': A qualitative study among HIV sero-discordant couples on ART in rural Uganda (2012). [Submitted]