The process of developing an HIV disclosure intervention for youth with perinatally acquired HIV: The HIV Empowering Adults' Decisions to Share - UK/Uganda Project (Heads-Up).

Abstract

Sharing one's HIV status with others (onward HIV disclosure) for youth with perinatally acquired HIV (PAH) is often difficult but may assist with challenges associated with living with HIV. We describe the development of an intervention to help HIV-sharing decision-making for UK and Ugandan youth with PAH. The methods included : (1) semi-structured interviews with 50 participants (20 with PAH patients aged 18-25 years, 20 friends, family or partners and 10 professionals), (2) a survey of 57 UK participants with PAH patients aged ≥17, (3) the development of an intervention conceptual model, (4) intervention development, including obtaining intervention feedback from 13 youth with PAH. The survey showed that group (23/57; 40%) and mixed individual and group formats (21/57; 37%), mixed gender groups (52/57; 91%) and peer worker involvement (54/57; 95%) were preferred. The interviews highlighted the importance of overcoming feelings of shame and accepting one's status before sharing, having support to feel confident to share, personal values playing a part in sharing decisions and friends and partners explaining that they had not been educated about HIV until someone had shared their status with them. We describe the finalised intervention, and strengths and limitations of the intervention development process are outlined.Trial registration: ISRCTN Registry, ISRCTN31852047, Registered on 21 January 2019.