Rediscovering life after being diagnosed with HIV: A qualitative analysis of lived experiences of youth living with HIV in rural Rwanda.

Introduction: In sub-Saharan Africa, youth living with HIV, especially those who have lost one or both parents, face economic, socially and psychological challenges that hinder adherence to ART, ultimately leading to poor health outcomes. Partners In Health/Inshuti Mu Buzima implemented an Adolescent Support Group (ASG) to support HIV-positive youth aged 15-25 years. During the evaluation of the ASG program, we sought to better understand youths' lived experiences to improve our delivery of HIV care. Methods: We conducted qualitative in-depth, semi-structured individual interviews with youth enrolled in the ASG program. All interviews were conducted in-person or by telephone. Thematic analysis applying the framework approach with parallel inductive coding in Kinyarwanda and English was used. Results: We interviewed 35 youth who ranged in age from 16 to 29 years. The main themes related to the lived experiences of youth were (a) Experiences living with HIV, including disclosure, stigma, interactions with the health care system, and medication adherence; (b) external challenges, defined as challenges that were not related to the implementation of the ASG program; and (c) personal vision. Almost all youth reported acquiring HIV from their mothers and disclosure of HIV status occurred around the age of 10. Disclosure was often unintentional and followed by internalized and enacted stigma. Many reported poor past medication adherence which improved following enhanced counselling. External challenges were overwhelmingly economic in nature, and orphanhood was a root cause of other challenges such as difficulty accessing education, lack of transport to health facility, and lack of insurance fees. Despite these challenges, youth have an optimistic view of the future with dreams of health, economic attainment, marriage, and children. Conclusion: Healthcare providers should empower caregivers to support HIV disclosure. Supporting youth as they face many economic challenges could help address socio-economic barriers to good health and promote holistic well-being.

Implementation and Adaptation of a Combined Economic Empowerment and Peer Support Program Among Youth Living With HIV in Rural Rwanda.

Background: Youth living with HIV in rural Rwanda experience poor clinical outcomes. In 2017, we implemented Adolescent Support Groups (ASGs), which provided economic incentives and peer support to youth aged 15-25. Methods: We assessed the ASG program using programmatic and electronic medical records. We described group composition and achievement on three indicators used to determine economic incentive levels: (1) quarterly pharmacy visit attendance, (2) biannual savings target achievement, and (3) annual viral suppression. Results: In total, 324 members enrolled in 34 ASGs. Group size and member ages varied more than anticipated. Groups performed well on pharmacy visit attendance (median quarterly group attendance range 91-100%) and on achieving savings targets (median biannual achievement range 80-83%). The viral suppression indicator could not be implemented as planned. Conclusion: To reflect contextual realities, adaptations in enrollment, indicator evaluation, and awarding of incentives occurred during implementation. Future research should assess whether these adaptations affected results.

Receipt of a combined economic and peer support intervention and clinical outcomes among HIV-positive youth in rural Rwanda: A retrospective cohort.

INTRODUCTION: To combat poor clinical outcomes among HIV-positive youth, Partners In Health/Inshuti Mu Buzima (PIH/IMB) implemented Adolescent Support Groups (ASGs), which combined peer support and group-based economic incentives to promote treatment adherence, economic empowerment, and viral suppression. This study assesses the association between ASG membership and clinical outcomes among HIV-positive youth living in rural Rwanda. METHODS: We constructed a retrospective cohort using PIH/IMB's electronic medical record (EMR) system. ASG members were matched to control youth within strata defined by health facility, year of birth, and whether the patient had enrolled in HIV services as a pediatric patient, as a PMTCT mother, or through another route. Our 12-month outcomes of interest were a) death-free retention in care, b) death-free retention with active follow-up, c) ≥80% adherence to appointment keeping, and d) viral load suppression (<20 copies/ml). We used generalized linear mixed models to estimate odds ratios for the association between ASG participation and each outcome. To mitigate possible unmeasured confounding, we additionally included participant data from the previous year and conducted a difference-in-difference analysis for each outcome to assess whether ASG members experienced greater changes compared to control youth over a similar period. RESULTS: Two-hundred sixty ASG members were identified in the EMR and matched to 209 control youth for analysis. After 12 months of follow-up, ASG members had similar outcomes to the control youth in terms of death-free retention (93% vs. 94%), death-free retention with active follow-up (79% vs. 78%), ≥80% adherence to appointment keeping (42% vs. 43%), and viral suppression (48% vs. 51%). We did not observe any significant associations between ASG participation and clinical outcomes in crude or adjusted models, nor did ASG members experience greater improvements than control youth in our difference-in-difference analysis. CONCLUSIONS: The ASG program did not improve retention, appointment adherence, or viral suppression among HIV positive youth in rural Rwanda. Challenges implementing the intervention as designed underscore the importance of incorporating implementation strategies and youth perspectives in program design. This population remains vulnerable to poor clinical outcomes, and additional research is needed to better serve youth living with HIV.