Pathways to Resiliency and Empowerment: A Novel Approach to Understanding Adolescents Living with HIV

Background and Purpose: It is estimated that over thirty-five million people around the world live with Human Immunodeficiency Virus (HIV), and over 71% live in sub-Saharan Africa. Despite scientific gains in HIV prevention, Uganda is still one of the countries seriously affected by the HIV/AIDS epidemic. HIV is a highly stigmatized disease with social ridicule and discrimination, leading to depression, trauma, and severe mental health problems. Further, HIV/AIDS epidemic is often a component of related synergistically interacting epidemics that give rise to other poor health outcomes, food insecurity, unemployment, and adherence to antiretroviral therapy (ART). Despite the scientific discoveries and knowledge, we know very little about pathways to resilience and empowerment adolescents employ to manage the disease. Utilizing resilience theory, the study explored adolescents’ lived experiences and strategies to cope with a severe and highly stigmatized disease. Using the components of resilience, which involve the processes of responding to adversity, the study examines resilience’s empowering ability to uncover the individual’s capacity to bounce back after experiencing difficulties.

Methods: Using a qualitative interpretive phenomenological approach (IPA), the study examines the lived experiences of youth ages 18 to 24 living with HIV in Uganda. Data were collected through partnerships with local health clinics after Institutional Review Board (IRB) requirements. Six focus groups (N=31) that met between December 2020 to May 2021 provided the data for analysis. Participants included young men, women, men having sex with men (MSM), sex workers, and perinatally infected young people who receive/d services at the local private and government run clinics. Participants were screened for eligibility, and informed consent was provided before the study. All focus group sessions were audio-recorded with approval from the participants, transcribed verbatim, and subsequently analyzed using the grounded theory approach. Data triangulation was conducted through checking and rechecking to ensure that the findings were corroborated. A follow-up focus group with the participants was done to strengthen the validity and reliability of the data.

Results: The findings indicate that adolescents living with HIV went through several pathways in their HIV experiences: 1) denial, 2) despair, 3) suicidal ideation, and 4) substance use, 5) acceptance, 6) resilience, 7) empowerment, which were seldom linear. Resilience was arrived at after acceptance of the reality of HIV, their health, and physical needs, as well as receiving the needed support. Further, the youth had the resolve to educate and spread knowledge about HIV prevention, and muster the courage to advocate for their rights and the wellbeing of others. This point of empowerment was developed through various mechanisms of social support, familial support, social media, and health clinic support.

Conclusions and Implications: HIV management is a complex web of synergistically interacting components within a social context involving fighting stigma, self-discovery, and an aptitude to beat the odds. Social work researchers, advocates and policymakers, and programs must develop interventions to bolster individuals’ inherent determination to be better and overcome the social, physical, and health headwinds that stand in the way.