What do young adults with perinatally acquired HIV think about onward HIV disclosure interventions? A survey of attendees at a London transition service

Background: An important challenge for young people with perinatally
acquired HIV (PaHIV) is onward disclosure (disclosing their HIV status to
others). There is little onward disclosure guidance for young people with PaHIV
or professionals working with this population and no published disclosure
interventions for PaHIV. Increasing onward disclosure to friends, family and
partners may enhance social support, improve self-esteem and wellbeing,
facilitate antiretroviral adherence and decrease onward HIV transmission.
Methods: Anonymised survey of young people with PaHIV attending a specialist
transition service in London to inform the development of a behavioural onward
disclosure intervention. Paper based questionnaire assessing: HIV disclosure
difficulty, interest and desirable features of a future HIV disclosure intervention
(e.g., format, sex, peer support), and barriers to HIV disclosure.
Results: 57 young people, median age 21 (range 17-28) years, 26 female,
completed the survey. Thirty six of 57 (63%) either agreed or strongly agreed
that onward disclosure was difficult. Twenty one of 57 (37%) were not
interested in taking part in a future intervention, 25 (44%) were unsure, and
11 (19%) expressed interest. There was no correlation (r=0.04) between
perceived HIV disclosure difficulty and interest in a future intervention. Group
(23/57) and mixed individual and group formats (21/57) were preferred. Most
were keen on mixed sex groups (52/57) and peer worker involvement both
within and outside of the intervention (54/57). Barriers to HIV disclosure
included; attitudes (e.g., “I do not want to tell anyone I’m HIV positive”),
normative beliefs (e.g., “My friends or family would not want me to take part
in a course”) and control beliefs (e.g., “I would not trust other people taking
part in the course to keep my HIV status secret”).
Conclusion: Perinatally infected young people experience significant
difficulties in disclosing their HIV status to others but are ambivalent about
receiving structured disclosure interventions. Efforts to develop HIV disclosure
interventions should engage with young people to address (a) HIV disclosure
barriers and (b) barriers to taking part in disclosure interventions. Designing
interventions with features that are preferred by young people (e.g., group or
mixed format, mixed sexes and with peer worker involvement) is likely to
enhance the acceptability and uptake of future HIV disclosure interventions.