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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, Christian C, Akatukwasa C, et al. (2024). Global Health Action. "We look at those that have done very well, but there are also strugglers. Then we share those experiences: for those who are doing well, what have we done? Why is it working for you, and <why> is it not working elsewhere? Those that are struggling, what support would you like to get from those that are getting on well?" District Health Officer, Intervention Arm Synopsis: A thematic analysis of six focus-group discussions from the intervention and 23 key informant interviews with control group participants from the SEARCH-IPT trial, which led a series of mini-collaborative meetings to provide business leadership and management training for an intervention group of mid-level healthcare system managers in rural Eastern, East-Central, and Southwestern Uganda to increase uptake of isoniazid-prevention therapy (IPT) for people living with HIV.
Key Findings: District Health Officers and District Tuberculosis and Leprosy Supervisors deployed five implementation skill sets to achieve sustainable implementation and clarify ambiguous decision-making space: data-based decision-making, root-cause analysis, quality assurance, evidence-based empowerment, and sharing best practices with colleagues, thereby reaching beyond outcome measures to address root problems around the District Health Officer’s range of authority and obtain buy-in from district health workers. Recommendations: Horizontal accountability, in which mid-level health system managers share their experiences implementing core practices, made concrete, demonstrably sustainable implementation changes at the district level, suggesting that capacity building at the mid-manager level must reach beyond identifying knowledge gaps and also show people how to implement knowledge they may already possess. Focusing on core practices – rather than competencies – is objectively implementable and measurable at the system level. “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. 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. Johnson-Peretz J, Arunga T, Lee J, et al. (2024). International Journal of Qualitative Methods. Cultural rigour (Lock et al., 2021) “affirms the value of experiential knowledge and stresses a collaborative process” (Leung et al., 2004). Synopsis: We describe a newly-developed, digital approach that integrates findings from our qualitative team, which we call R-EIGHT (Remote and Equitable Inductive Analysis for Global Health Teams), to speed the inductive coding process without sacrificing rigour, while remaining accessible to geographically dispersed teams. This is especially crucial in global health partnerships where on-the-ground researchers may have less input into codebook development compared to in-the-office researchers.
Method: The method consists of eight steps. (1) participant interviews are transcribed, during which time... (2) A team member develops an a priori codebook from existing interview guides and study protocols. (3) Each team member is given a transcript or set of transcripts for initial or line-by-line coding using the ‘comment’ function in MS Word. (4) The team members then send their coded or commented-upon transcripts to a central teammate responsible for merging the commented-upon documents. This will produce a document in which teammate comments for a given section all appear together in a side column. (5) The team meets to review the comments, which are conveniently grouped together around the relevant text, to foster discussion and compare the language each coder is using. (6) The team compares these inductively-derived codes with any a priori codes (if used) in axial or second-cycle coding to develop focused codes, in order to... (7) Define the range of application of an a priori code, and to add new parent and child codes to the codebook as necessary. (8) Finalise the codebook for coding the remaining data sets. Key Contribution: The technique we developed a) speeds the process of inductive coding as a team, b) visually displays interpretive consensus, and c) when appropriate fosters streamlined integration of inductive findings into codebooks. Because it involves all team members, our approach helps break the divide between in-office and on-the-ground teams, fostering integrated and representative contributions from all globally-dispersed team members. Johnson-Peretz J, Chamie G, Kakande E, et al. (2023). Social Science & Medicine (SSM). “Now the challenge is getting the TB contacts because it also depends on the location of both the district and where the patient is coming from. The districts near the lakes, most people there are immigrants, so you find that the primary person is coming from the landing site and tracing the contact becomes very difficult.” (District Health Officer, Intervention Arm) Synopsis: Though often overlooked in the literature, all study trials take place within a geographic and social context that can have profound effects on both intervention and control activities. We examine what participants from both the control and intervention groups of a TB-prevention rollout trial had to say about the social, political, and healthcare administration contexts in which the intervention was implemented, including the natural and built environments, national and subnational politics, human geography, and societal change. By ‘human geography’ and ‘social geography,’ we mean the relationships people and communities have with and across natural, built, and social environments.
Key Findings: The multiple challenges managers faced fell along political, administrative, and social axes. * Politically, the individual relationships mid-level health managers have with local political and media leaders serve either to facilitate or hinder public health efforts to inform the public and provide much-needed services in an effective and targeted manner. * At the administrative level, much work is dependent on implementation partner engagement and funding, which creates an expectation on the part of providers that they will be given money when directed to widen their scope of standard-of-care practices. At other times, greater coordination between national-level logistics and local needs is required. * Social challenges included local settings which promote the spread of TB, such as crowded housing conditions and drinking venues, as well as regionally distinct employment opportunities often entailing both long- and short-distance mobility around regional hubs and international border crossings in often rural-to-urban directions. * Misinformation about what TB is and how it can be effectively addressed added to these challenges. Recommendations: The geography of districts, social contexts and mobility of the patient populations concerned, political and implementing partner variability, and local clinical gaps interact together to create the health ecosystem. These contextual factors should be acknowledged and included in strategic healthcare capacity-building efforts at the mid-management level for sustainable TB and infectious-disease prevention planning in the region. 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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