Capacity to Consent to Research Among Adolescent-Parent Dyads in Rakai, Uganda.

OBJECTIVES: To assess the cognitive capacity of early, middle, and late adolescents and their parents or guardians to provide informed consent to a population-based cohort study. STUDY DESIGN: Adolescent-parent/guardian dyads including 40 early (n = 80; 10-14 years), 20 middle (15-17 years), and 20 late (18-19 years) adolescents were recruited from the Rakai Community Cohort Study, an open demographic cohort in Uganda. Participants were administered the MacArthur Competence Assessment Tool for Clinical Research, a structured open-ended assessment; interviews were recorded and transcribed. Twenty transcripts were scored independently by two coders; the intraclass correlation coefficient was 0.89. The remaining interviews were scored individually. We compared mean scores for early and middle/late adolescents using a one-sided t test and score differences between parent/guardian and adolescent dyads using two-sided paired t tests. RESULTS: Early adolescents (mean score, 28.8; 95% CI, 27.1-30.5) scored significantly lower (P < .01) than middle/late adolescents (32.4; 31.6-33.1). In paired dyad comparisons, we observed no statistically significant difference in scores between parents/guardians and middle/late adolescents (difference, -0.2; 95% CI, -1.0-0.6). We found a statistically significant difference in scores between parents/guardians and early adolescents (difference, 3.0; 95% CI, 1.2-4.8). CONCLUSIONS: The capacity of adolescents-of different ages and in diverse settings-to comprehend risks, benefits, and other elements of informed consent is a critical but understudied area in research ethics. Our findings support the practice of having middle and late adolescents provide independent informed consent for sexual and reproductive health studies. Early adolescents may benefit from supported decision-making approaches.

The Promise and Peril of Mobile Phones for Youth in Rural Uganda: Multimethod Study of Implications for Health and HIV.

BACKGROUND: In East Africa, where landlines are used by 1% of the population and access to the internet is limited, owning a cell phone is rapidly becoming essential for acquiring information and resources. Our analysis illuminates the perils and potential promise of mobile phones with implications for future interventions to promote the health of adolescents and young adults (AYAs) and to prevent HIV infection. OBJECTIVE: The aim of this study is to describe the current state of AYAs' phone use in the region and trace out the implications for mobile health interventions. METHODS: We identified 2 trading centers that were representative of southern Uganda in terms of key demographics, proportion of cell phone ownership, and community HIV prevalence. We stratified the sample of potential informants by age group (15-19 years and 20-24 years), gender, and phone ownership and randomly sampled 31 key informant interview participants within these categories. In addition, we conducted 24 ethnographic participant observations among AYAs in the communities of study. RESULTS: AYA frequently reported barriers to using their phones, such as difficulty accessing electricity. Nearly all AYAs used mobile phones to participate in the local economy and communicate with sexual partners. Phone use was frequently a point of contention between sexual partners, with many AYAs reporting that their sexual partners associated phone use with infidelity. Few AYAs reported using their phones for health-related purposes, with most getting health information in person from health workers. However, most AYAs reported an instance when they used their phone in an emergency, with childbirth-related emergencies being the most common. Finally, most AYAs reported that they would like to use their phones for health purposes and specifically stated that they would like to use their mobile phones to access current HIV prevention information. CONCLUSIONS: This study demonstrates how mobile phones are related to income-generating practices in the region and communication with sexual partners but not access to health and HIV information. Our analysis offers some explanation for our previous study, which suggested an association between mobile phone ownership, having multiple sexual partners, and HIV risk. Mobile phones have untapped potential to serve as tools for health promotion and HIV prevention.

Antiretroviral treatment sharing among highly mobile Ugandan fisherfolk living with HIV: a qualitative study.

Antiretroviral treatment (ART) diversion from prescribed to non-prescribed users (i.e., sharing or selling) is an understudied dimension of HIV treatment adherence. We sought to explore ART diversion patterns in high-prevalence fishing communities on Lake Victoria, Uganda. We implemented a qualitative study in two fishing communities on Lake Victoria in south-central Uganda to identify facilitators of and pathways to ART diversion. We conducted 25 semi-structured interviews with HIV-positive fishermen (n = 25) and female sex workers (n = 10) covering personal and community experiences with ART selling/sharing, reasons for medication diversion, and potential solutions to reduce diversion. Data were analyzed using an adapted framework analysis approach. Participants reported frequent ART sharing within occupational networks, but no selling. Mobility was the principal driver of ART sharing and was associated with other barriers to treatment access including stigma, fear of negative health provider interactions, and transportation. ART sharing appears to emerge in response to short-term treatment interruptions in this setting. Future studies should explore characteristics and drivers of ART diversion in other high-burden settings and identify how these practices are correlated with key health outcomes like virologic failure and drug resistance.

Cognitive interviewing to assess and adapt three measures of mental health symptoms among people living with HIV in Rakai, Uganda: the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL).

Mental health is conceptualized differently across cultures, making cross-cultural validation of screening tools critical. In Uganda, we used cognitive interviewing to assess and adapt three scales for measuring psychological distress: the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL). We recruited 12 people living with HIV from the Rakai Community Cohort Study (RCCS) and interviewed seven potential users of the scales (four RCCS survey interviewers and three local health workers). Data were analyzed systematically using a team-based matrix approach. The HSCL was generally well understood, with minor clarifications needed. The Thinking a Lot Questionnaire was also well understood, though differences between "how much" and "how often" required specificity. Both included local idioms of distress from prior adaptations. The PHQ-9 performed less well, with many questions interpreted variably or showing unclear local applicability, especially among people living with HIV. For example, questions about trouble concentrating were misunderstood, focusing on examples like newspapers rather than the broader issue of concentration. Future research should explore the validity and utility of commonly used instruments as mental health research expands in Africa.

Identifying longitudinal patterns of HIV treatment (dis)engagement and re-engagement from oral histories of virologically unsuppressed persons in Uganda: A thematic trajectory analysis.

BACKGROUND: There is limited study of persons deemed "harder to reach" by HIV treatment services, including those discontinuing or never initiating antiretroviral therapy (ART). We conducted narrative research in southern Uganda with virologically unsuppressed persons identified through population-based sampling to discern longitudinal patterns in HIV service engagement and identify factors shaping treatment persistence. METHODS: In mid-2022, we sampled adult participants with high-level HIV viremia (≥1000 RNA copies/mL) from the prospective, population-based Rakai Community Cohort Study. Using life history calendars, we conducted initial and follow-up in-depth interviews to elicit oral histories of participants' journeys in HIV care, from diagnosis to the present. We then used thematic trajectory analysis to identify discrete archetypes of HIV treatment engagement by "re-storying" participant narratives and visualizing HIV treatment timelines derived from interviews and abstracted clinical data. RESULTS: Thirty-eight participants (median age: 34 years, 68% men) completed 75 interviews. We identified six HIV care engagement archetypes from narrative timelines: (1) delayed ART initiation, (2) early treatment discontinuation, (3) treatment cycling, (4) prolonged treatment interruption, (5) transfer-related care disruption, and (6) episodic viremia. Patterns of service (dis)engagement were highly gendered, occurred in the presence and absence of optimal ART adherence, and were shaped by various factors emerging at different time points, including: denial of HIV serostatus and disclosure concerns; worsening HIV-related symptoms; psychological distress and depression; social support; intimate partner violence; ART side effects; accessibility constraints during periods of mobility; incarceration; and inflexible ART dispensing regulations. CONCLUSIONS: Identified trajectories uncovered heterogeneities in both the timing and drivers of ART (re-)initiation and (dis)continuity, demonstrating the distinct characteristics and needs of people with different patterns of HIV treatment engagement throughout the life course. Enhanced mental health service provision, expanded eligibility for differentiated service delivery models, and streamlined facility switching processes may facilitate timely (re-)engagement in HIV services.

When Coffee Collapsed: An Economic History of HIV in Uganda.

In some Ugandan fishing communities, almost half the population lives with HIV. Researchers designate these communities "HIV hotspots" and attribute disproportionate disease burdens to "sex-for-fish" relationships endemic to the lakeshores. In this article, we trace the emergence of Uganda's HIV hotspots to structural adjustment. We show how global economic policies negotiated in the 1990s precipitated the collapse of Uganda's coffee sector, causing mass economic dislocation among women workers, who migrated to the lake. There, they entered overt forms of sex work or marriages they may have otherwise avoided, intimate economic arrangements that helped to "engineer the spread of HIV," as one respondent recounted.