Psychosocial challenges and strategies for coping with HIV-infection among in-school perinatally-infected adolescents in Uganda: A qualitative study

Expanding access to antiretroviral therapy (ART) in Uganda has increased the longevity of children perinatally infected with HIV but data on the socio-emotional coping among HIV-infected adolescents remain scarce. The purpose of this study was to investigate the psychosocial challenges and coping strategies among HIV-infected adolescents, with the aim of identifying issues amenable to intervention. In-depth interviews were conducted with a purposive sample of 38 perinatally-infected adolescents, 12 - 19 years at a large HIV treatment center in Kampala, Uganda. Data were analyzed thematically to identify themes and domains related to stressors and specific coping strategies. Psychosocial challenges included difficulties in disclosing HIV status to peers and siblings, perceived and enacted stigma/discrimination, financial worries, adherence difficulties, and HIV transmission concerns. Treatment optimism, rationalizing techniques e.g. “I am not the first and last person to have HIV”, social comparison, religiosity, avoidance and distraction were the most frequently reported emotional coping strategies. Disclosure and stigma/discrimination concerns were largely managed by non-disclosure or limited disclosure to close family members and peers. HIV transmission worries were managed by avoiding sexual partners and delay of sexual initiation. Lastly, adherence was managed using alarms, keeping medications with nurses at the school clinics, special arrangements with school authorities e.g. resting permits, use of decoys and self-monitoring of health status. Age and gender differences also emerged: younger participants generally lacked specific coping strategies; compared to females, male adolescents reported greater use of avoidance/distraction techniques. Results highlight several opportunities for program interventions to improve the wellbeing of HIV-infected adolescents.