BACKGROUND: HIV status disclosure remains a major challenge among children living with perinatally acquired HIV with many taking treatment up to adolescence without knowing their serostatus. This non-disclosure is influenced by factors like fear of the negative consequences of disclosure. Since HIV status disclosure has been found to have good effects including improving treatment adherence and better mental health outcomes, there is a need to design interventions aimed at improving disclosure rates among children living with HIV. This study aims at adapting a clinic-based pediatric HIV status disclosure intervention and tasking shifting from healthcare workers to caregiver peer supporters in Eastern Uganda.
METHODS: The adaptation process involved consultations with caregivers, healthcare workers involved in the care of children living with HIV, researchers in this field, intervention developers, and other experts and stakeholders. This was done through conducting FGDs with HCWs, caregivers, and peer supporters and consultations with researchers in the field of HIV. The original intervention manual was translated to Lusoga which is the commonly spoken dialect in this region. Collected qualitative data were analyzed using an inductive approach to develop themes and subthemes. Written informed consent will be obtained from all participants before participation in the study.
RESULTS: A total of 28 participants were involved in the FGDs, while two pediatricians and two HIV researchers/specialists were consulted. Six themes were generated in relation to all suggested changes to the original manual which were related to: (1) sociocultural beliefs/norms/perceptions (5 FGDs), (2) boosting caregiver’s confidence for disclosure (5FGDs), (3) disclosure mode, environment, and person (4 FGDs), (4) health facility/system related changes (3 FGDs), (5) reorganization/paraphrasing (3FGDs) and (6) age appropriateness (2FGDs).
CONCLUSION: This study emphasized that whereas some aspects of intervention can apply to various contexts, there is a need for cross-cultural adaptation of interventions before being implemented in settings where they were not developed.
Cultural adaptation of clinic-based pediatric HIV status disclosure intervention with task shifting in Eastern Uganda
AIDS Research and Therapy, 22 (1), 48. doi: 10.1186/s12981-025-00743-7. PMCID: PMC12008972.