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Johnson-Peretz J, Onyango A, Akatukwasa C et al. (2025). SSM-Qualitative Research in Health. “It was so hard for me to tell mother, although I later did. The health providers had always asked me for her telephone number so as to tell her how I was found HIV positive, but I persistently refused to provide it to them, because I never wanted her to know my status. But later I realised it was wrong telling outsiders and not telling my parent.” 17 y.o. female, Uganda Synopsis: An analysis of motivations and barriers to HIV status disclosure among adolescents and young adults with HIV, with attention to targets/confidants, contexts, and communication strategies. Data drawn from semi-structured interviews conducted with youth living with HIV, their providers, and selected family members during a longitudinal study in East Africa.
Key Findings: Disclosure of antiretroviral therapy (ART) use appeared to present more significant hurdles than disclosure of HIV status alone. Medication bottles or pills often provided a contextual opening for disclosure conversations. Social roles and expectations influenced HIV status disclosure motivations among AYAH, including filial piety towards parents, spontaneous reciprocity with friends, and conscientiousness towards school supervisors. Recommendations: Encouraging not only HIV status disclosure but HIV treatment disclosure may facilitate support for ART adherence. Tailoring disclosure strategies to particular target-confidant types may help youth disclose more easily and validate their social values and chosen ties while supporting successful care engagement.
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Johnson-Peretz J, Onyango A, Akatukwasa C, et al. (2025). JIAPAC. "I feared taking ARVs at first but, at the same time, had no option. It was hard taking them during the first days, but I got used to it in the long run. Time was another issue here; I first started taking them before 9 pm, but this was marked by lots of forgetfulness, and I had to change to 10 pm, after which things went well." (Female Participant 1, Baseline: VL: 40) Synopsis: We used a case-study approach based on semi-structured interviews conducted at three time points over two years to identify changes in the lives of 11 adolescents and young adults (aged 15-24 years) participating in an HIV intervention trial in rural communities in Kenya and Uganda.
Key finding: Supportive family environments, high-quality service provision, and residential and partnership stability free of violence, or permitting freedom to move and maintain extensive social ties both inside and outside one’s immediate community, enabled antiretroviral therapy (ART) adherence. Recommendations: To improve virologic suppression, clinical care and interventions should include assessments of and strategies for addressing food insecurity, ART disclosure, and home-based violence from intimate partners or other family members. Johnson-Peretz J & Mawngwa F, et al. (2025). Tropical Medicine and Infectious Disease (Special Collection on Adolescent HIV Continuum of Care and Transition: Successes, Challenges, Outcomes, and Interventions) “I did not feel good at that time, I hated myself inside me. I asked myself, at this age of mine, I am HIV positive, what is my future going to be like? I had so many thoughts. After I started coming here to the clinic, I would meet young people, those who are breast feeding, and those who are older than me. I saw my age-mates; I saw that everyone is affected, and I accepted my situation the way it was. I believed that HIV does not kill, it only kills fools”. (Female, 18 y.o., intervention arm, Uganda) Synopsis: We conducted a mixed-methods study of youth with HIV aged 15–24 years in SEARCH-Youth, a life-stage-based care model that improved viral suppression during a cluster-randomized trial in rural Uganda and Kenya.
Key Findings: Having any depressive symptoms was less common in the intervention arm (53%) compared to the control (73%), representing a 28% risk reduction (risk ratio: 0.72; CI: 0.59–0.89). Predictors of at least mild depression included pressure to have sex, physical threats, and recent major life events. Longitudinal qualitative research among 113 participants found that supportive counseling from providers helped patients build confidence and coping skills. Recommendations: Integrated models of care that address social threats, adverse life events, and social support can be used to reduce depression among adolescents and young adults with HIV by improving patient–provider interactions, facilitating trust, augmenting existing support systems, helping AYAH identify new sources of support, and linking them to additional external resources as appropriate. Johnson-Peretz J, Lebu S, Akatukwasa C, et al. (2022). Journal of the International AIDS Society (JIAS). “She shared that she is supposed to take her drugs at 8pm and this forces her to carry drugs to class, which she is not comfortable doing. They are usually given a five-minute break and that is when she tries to fix her time with the drugs, which again is not working out so well because everybody shares the break and her friends do not equally want to leave her alone. She ends up missing doses because of that.” (Non-facility based provider, Kenya) Synopsis: This qualitative study conducted among adolescents and young adults living with HIV, their family members and care providers in eastern African communities, elucidates actions AYAH undertake to resist forms of HIV-related stigma.
Key Findings: Youth resisted stigma through selective disclosure to trusted allies, and invented ways to adhere to ART, leading to an increased sense of agency and better health outcomes. Both older and younger adolescents stressed the importance of support systems at home and among school staff, with older adolescents showing greater ability to direct these relationships and disclosures, while younger adolescents relied on parents or caregivers to pave the way. Recommendations: Introducing younger adolescents to a peer group of other AYAHs (especially including schoolmates) at the time of disclosure may create an initial support framework for resisting stigma by showing younger adolescents they are not alone. This also creates the linkages between peers, which promotes synchronicity in life-course expectations and may help carry through adherence into adulthood. For older adolescents, their life stage is a key opportunity to establish successful engagement in care by appealing to their growing sense of (self-) responsibility, especially within a context where stigma is a reality. Through modelling opportunities for selective disclosure to teachers, staff and peers, providers can counsel older adolescents on the key life skill of building supportive social and professional networks, while facilitating retention in care as the adolescent becomes an adult. |
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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