A randomised feasibility trial of an intervention to support sharing of HIV status for 18–25-year olds living with perinatally acquired HIV compared with standard care: HIV Empowering Adults’ Decisions to Share—UK/Uganda Project (HEADS-UP)

Abstract

Background Young adults with perinatally acquired HIV (PAH) face several challenges, including adhering to antiretroviral therapy (ART), managing the risk of onward HIV transmission and maintaining positive well-being. Sharing one’s HIV status with others (onward HIV disclosure) may assist with these challenges by facilitating emotional and practical support. Rates of HIV status sharing are, however, low in this population. There are no existing interventions focused on sharing one’s HIV status for young adults living with PAH. The HEADS-UP study is designed to develop and test the feasibility of an intervention to help the sharing of HIV status for young adults with PAH. Methods The study is a 30-month multi-site randomised feasibility study across both a high-income/low-HIV prevalence country (UK) and a low-income/high-HIV prevalence country (Uganda). Phase 1 (12 months) will involve developing the intervention using qualitative interviews with 20 young people living with PAH (ten in the UK—18 to 29 years; ten in Uganda—18 to 25 years), 20 of their social network (friends, family, sexual partners as defined by the young person; ten in the UK, ten in Uganda) and ten professionals with experience working with young adults with PAH (five in the UK, five in Uganda). Phase 2 (18 months) involves conducting a randomised feasibility parallel group trial of the intervention alongside current standard of care condition in each country (main study) with 18- to 25-year olds with PAH. A sample size of 94 participants per condition (intervention or standard of care; 188 participants in total: 47 in each condition in each country) with data at both the baseline and 6-month follow-up time points, across UK and Ugandan sites will be recruited. Participants in the intervention condition will also complete measures immediately post-intervention. Face-to-face interviews will be conducted with ten participants in both countries immediately post-intervention and at 6-month follow-up (sub-study). Discussion This study will be the first trial that we are aware of to address important gaps in understanding acceptable and feasible ways of delivering HIV status sharing support for young people living with PAH. Trial registration ISRCTN Registry, ISRCTN31852047, Registered on 21 January, 2019. Study sponsor: Royal Holloway University of London. Sponsor contact: alicen.nickson@rhul.ac.uk. Date and version: April 2020. Protocol version 3.5.

Cultural Adaption, Translation, Preliminary Reliability and Validity of Key Psychological and Behavioural Measures for 18 to 25 Year-Olds Living with HIV in Uganda: A Multi-Stage Approach

“…Three samples from a two-phase HIV disclosure intervention study [ 59 ] were used in the development and adaptation of measures. The first sample, drawn from phase one (intervention development phase) of the study, consisted of 10 young people (3 male, 7 female) from Uganda attending the Joint Clinical Research Centre (JCRC), Lubowa, on the outskirts of Kampala, the capital city of Uganda.…”

“…The aim of this paper is to report the process of cultural adaptation and development of measures for key psychological domains relevant to psychological well-being, in the context of piloting a disclosure intervention for PAH young people living in Uganda [ 59 ]. Cognitive interviewing established conceptual understanding and cultural appropriateness, whilst quantitative analysis established reliability (internal consistency), preliminary construct validity (the scale accurately measuring the psychological construct it was intended for), and criterion validity (the scale correlating with a conceptually related external measure, for example, positive disclosure attitudes correlating with actual HIV disclosure).…”

Adults with Perinatally Acquired HIV; Emerging Clinical Outcomes and Data Gaps

“…To quote the authors, “it is sobering that as we approach the third decade of the epidemic, HIV stigma remains a persistent reality that compromises the mental health of people with PaHIV–underscoring the renewed importance of carefully integrated mental health and stigma-reduction programming and addressing barriers to accessing these services.” HIV-related stigma causes disclosure-related anxiety and prevents youth sharing their status with family, friends and sexual partners for fear of rejection [ 56 , 57 ]. Status sharing can be particularly complex for those LWPaHIV, with the potential for an inadvertent disclosure of parental/sibling status, although, encouragingly, intervention studies to support disclosure for this population are emerging [ 58 ].…”

“…Young people LWPaHIV face unique challenges associated with their sexual behaviour, including sharing their HIV status with new partners, as, in doing so, they potentially disclose the HIV status of their parents and siblings. Many of this group of young people have grown up with HIV stigma, and face challenges in negotiating their sexuality and their relationships while living with HIV, as well as considering the potential for onward transmission [ 58 ]. Understanding sexual and reproductive health (SRH) needs in this population is crucial for providing high-quality, youth-friendly SRH education to promote healthy relationships and prevent both sexually transmitted infections (STIs) and unintended pregnancies.…”

“…HIV-related stigma causes disclosure-related anxiety and prevents youth sharing their status with family, friends and sexual partners for fear of rejection [56,57]. Status sharing can be particularly complex for those LWPaHIV, with the potential for an inadvertent disclosure of parental/sibling status, although, encouragingly, intervention studies to support disclosure for this population are emerging [58].…”