HIV status disclosure to perinatally-infected adolescents in Zimbabwe: a qualitative study of adolescent and healthcare worker perspectives

Introduction & Objectives: Due to the scale up of antiretroviral therapy, increasing numbers of HIV-infected children are living into adolescence. As these children grow and surpass the immediate threat of death, the issue of informing them of their HIV status arises. This study aimed to understand how perinatally-infected adolescents learn about their HIV-status as well as to examine their preferences for the disclosure process. METHODS: In-depth interviews were conducted with 31 (14 male, 17 female) perinatally-infected adolescents aged 16-20 at an HIV clinic in Harare, Zimbabwe, and focused on adolescents' experiences of disclosure. In addition, 15 (1 male, 14 female) healthcare workers participated in two focus groups that were centred on healthcare workers' practices surrounding disclosure in the clinic. Purposive sampling was used to recruit participants. A coding frame was developed and major themes were extracted using grounded theory methods. RESULTS: Healthcare workers encouraged caregivers to initiate disclosure in the home environment. However, many adolescents preferred disclosure to take place in the presence of healthcare workers at the clinic because it gave them access to accurate information as well as an environment that made test results seem more credible. Adolescents learned more specific information about living with an HIV-positive status and the meaning of that status from shared experiences among peers at the clinic. CONCLUSIONS: HIV-status disclosure to adolescents is distinct from disclosure to younger children and requires tailored, age-appropriate guidelines. Disclosure to this age group in a healthcare setting may help overcome some of the barriers associated with caregivers disclosing in the home environment and make the HIV status seem more credible to an adolescent. The study also highlights the value of peer support among adolescents, which could help reduce the burden of psychosocial care on caregivers and healthcare workers

‘HIV is like a tsotsi. ARVs are your guns’: Associations between HIV-disclosure and adherence to antiretroviral treatment among adolescents in South Africa

Objectives: WHO guidelines recommend disclosure to HIV-positive children by school age in order to improve ART adherence. However, quantitative evidence remains limited for adolescents. This study examines associations between adolescent knowledge of HIV-positive status and ART-adherence in South Africa. Design: Cross sectional study of the largest known community-traced sample of HIV-positive adolescents. N=684 ART-initiated adolescents aged 10-19 (52% female, 79% perinatally-infected) were interviewed. Methods: In a low-resource health district, all adolescents who had ever initiated ART in a stratified sample of 39 health facilities were identified and traced to 150 communities (n=1102, 351 excluded, 27 deceased, 40 (5.5%) refusals). Quantitative interviews used standardised questionnaires and clinic records. Quantitative analyses used multivariate logistic regressions, and qualitative analyses used grounded theory for 18 months of interviews, focus groups and participant observations with 64 adolescents, caregivers and healthcare workers. Results: 36% of adolescents reported past-week ART non-adherence, and 70% of adolescents knew their status. Adherence was associated with fewer opportunistic infection symptoms (OR .55 CI 0.40-0.76). Adolescent knowledge of HIV-positive status was associated with higher adherence, independently of all co-factors (OR 2.18 CI 1.47-3.24). Among perinatally-infected adolescents who knew their status (n=362/540) disclosure prior to age 12 was associated with higher adherence (OR 2.65 CI 1.34-5.22). Qualitative findings suggested that disclosure was undertaken sensitively in clinical and family settings, but that adults lacked awareness about adolescent understandings of HIV status. Conclusion: Early and full disclosure is strongly associated with improved adherence amongst ART-initiated adolescents. Disclosure may be an essential tool in improving adolescent adherence, and reducing mortality and onwards transmission