Meeting the Needs of Adolescents Living with HIV through Home Based Care - Lessons from Tanzania
Methods: We conducted a qualitative study in Dar es Salaam and Tanga Region consisting of in-depth interviews with 14 adolescents living with HIV, 10 primary caregivers, and 12 providers assigned to their households. Interviews examined adolescents' experiences of growing up with HIV, perceptions of current home based care, and challenges in increasing acceptability of services.
Results: We found the program did not align well with adolescents' expectations. Adolescents felt home based care to be more relevant to their caregivers and did not form independent relationships with providers. They expressed anxiety that participation might lead to inadvertent disclosure of their status and consequent discrimination. Both adolescents and their caregivers felt disappointment that no material or financial support was available despite widespread poverty, although they appreciated receiving psychosocial support and practical referrals. Providers demonstrated motivation to work with adolescents but acknowledged lacking requisite skills such as ways to communicate with young people and key messages to deliver.
Conclusions: Despite challenges, we identified feasible adaptations to make home based care more adolescent-centered. These include actively engaging adolescents in program design, improving provider training in communication with adolescents, and proactively addressing unrealistic expectations. Finally, increasing referral links to a wider range of services could improve program effectiveness by integrating it into a broader development approach.
Busza, J., et al., Meeting the needs of adolescents living with HIV through home based care: Lessons learned from Tanzania, Children and Youth Services Review (2014), http://dx.doi.org/10.1016/j.childyouth.2014.03.030
Available through: ScienceDirect http://www.sciencedirect.com/science/article/pii/S0190740914001364
Funding disclosure: The study was funded by Pathfinder International (61-A00001-0001-NONE-NR-000-000) through its private funds. Pathfinder commissioned the research by the London School of Hygiene and Tropical Medicine (LSHTM) as part of an internal evaluation and facilitated access to the Tanzania country office and local HBC staff and clients. Study design, data analysis, and writing of this paper were led by the first author, a full time academic staff member of LSHTM. GB coordinated fieldwork and assisted in primary data analysis. All co-authors were Pathfinder staff at the time of the study, data analysis and initial write-up, however both GB and EO had left Pathfinder employment during preparation of this manuscript. All authors have seen and commented on this draft and participated in the decision to submit.
Young People Living with HIV: A Collection and Review of the Resources for Health Workers Around the World
This compendium was developed to identify and facilitate access to useful resources that will help field teams and organizations around the world improve service provision for young people living with HIV. The compendium includes resources for PLHIV related to: HIV care; HIV treatment; positive, health, dignity, and prevention; sexual and reproductive health; and disclosure.
This report summarizes the findings from an end-of-project qualitative evaluation conducted in November and December of 2014.