Background Young people living with HIV (YPWH) poorly manage their health and disproportionately experience negative health and social outcomes. Poverty, isolation, stigma, and low social capital contribute to health inequality in YPWH. Young people affected by HIV (have a HIV positive sibling or parent) are often equally affected by these factors and have an increased chance of becoming HIV-positive themselves compared to their peers. Service providers working with HIV infected and affected adolescents must understand the kinds of behaviours the group are exhibiting and their everyday life experience in order to provide the most appropriate and relevant support.

Methods YPLWAH accessing a third sector support service completed a modified version of the YRBS (Youth Risk Behaviour Survey) over two days in September 2013. Participation was voluntary, anonymous and the young people were given a clear explanation of the uses of the survey data.

Results 54 YPLWAH completed the survey, of whom 70% were HIV positive (30% were affected). The median age was 16 and 57% of participants were female. Selected results include:

80% of participants regularly take care of family members and 27% of respondents spend 3+ hours a day caring for family members.

55% of participants never talk to their family about HIV and only 2% can talk to their friends about HIV.

20% had been admitted to hospital because of HIV related reasons. 31.5% had thought about attempting suicide and 41% had experienced feeling so sad and hopeless that they stopped doing their usual activities for more than 2 weeks in a row. 52% have had a sibling or parent die.

48% have had sex by choice, 11% were aged 12 or younger at sexual debut, median age was 14. 16.5% have had sex against their will.

51% of those who were sexually active used a condom every time, 41% sometimes used a condom, 8% never used a condom.

Conclusion This study further highlights the extensive practical and psychosocial support needs of HIV+ and HIV affected adolescents. The results of this survey have guided future programming of interventions and support at a third sector service for this group.