Growing up with HIV in Kisumu, Kenya: Participatory action research with young people living with HIV

Forty-one percent of new HIV infections are in young people between the ages of 15-24 (Masquillier, et al., 2012). In addition to new infections, advances in medications are now making it possible for children born with HIV to survive into adolescence and adulthood (Bland, 2011; Gray, 2010). Due to the growing population of youth living with HIV, there is an increased need for adolescent-appropriate care and intervention. While many studies have examined the role of education in preventing HIV transmission for HIV-negative youth in the Sub-Saharan context, few have focused on the education and experiences of young people living with the virus. Studies that do focus on HIV-positive youth primarily report biomedical information and demographics, leaving out the voices and experiences of these youth. To more effectively meet the needs of adolescents living with HIV in Sub-Saharan Africa, the experiences of these youth must be explored and documented.;The purpose of the study was to use a participatory action research (PAR) approach to answer the question: What is the experience of HIV positive youth living in Kisumu, Kenya? The goal of the study was to engage and empower a small research team of young adults in Kisumu to critically examine the needs and document the voices of HIV-positive adolescents. The research team generated three primary categories of inquiry: (a) stigma and discrimination, (b) school, and (c) substance abuse. Data was collected through individual interviews, focus groups, observation, journals, and meeting notes. A total of 40 adolescents (13-17 years) were recruited from orphanages and youth centers. Preliminary themes were identified through discussion and reflection by the research team and transcripts were later analyzed and coded. From the data emerged six major themes: (a) prevalence of self-stigma; (b) challenges with disclosure; (c) challenges with medical treatment; (d) lack of support in schools; (e) lack of substance use (f) coping strategies and hope. We concluded that although stigma was rampant, adolescents were still able to exert control over their lives and assert their agency through various means. We recommend that additional research be conducted on the experiences of adolescents living with HIV and also offer recommendations for practice.