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) (original) (raw)

Perceptions and Experiences about Self-Disclosure of HIV Status among Adolescents with Perinatal Acquired HIV in Poor-Resourced Communities in South Africa

AIDS Research and Treatment, 2016

Background.There is limited research on the disclosure experiences of adolescents with perinatal acquired HIV (PAH). The study explores how adolescents with PAH experience living with HIV and examined their perceptions and experiences regarding disclosure and onward self-disclosure to friends and sexual partners.Methods.Thematic analysis was used to analyze in-depth interviews conducted with 37 adolescents.Findings.Adolescents received disclosure about their status at mean age of 12 years. They perceived disclosure as necessary and appreciated the truthful communication they received. Adolescents have learned to accept and live with HIV, and they desired to be healthy and normal like other people. After receiving disclosure, they found their treatment meaningful, and they adhered to medication. However, they also expressed a strong message that their HIV status was truly their secret and that self-disclosure to others will take the feeling of being normal away from them because they...

Desire for improved disclosure, community and bonding among young adults with perinatally acquired HIV

Cogent Social Sciences, 2018

The increasing number of patients with PHIV transitioning into adulthood in high-income countries over the last decade or so has provided health care providers with opportunities to learn about unique obstacles and challenges faced by this population. To better understand the lived experiences of youth with PHIV, we conducted comprehensive interviews with nine patients with PHIV, between 19 and 30 years of age, at the Yale New Haven Human Immunodeficiency Virus (HIV) Program. Our interviews aimed to provide youth with PHIV a forum to share their views about: (1) what comprises a good quality of life (QoL), (2) their personal experiences with HIV disclosure, and (3) challenges they faced growing up and transitioning into adulthood. We derived supporting data on the resilience and QoL of our participants from responses to The Brief Resilience Scale and WHOQOL-HIV BREF surveys. Common themes that emerged included: desire for improved disclosure of HIV status, fear of stigma, and anger against biological mothers. Anger against biological mothers appeared to worsen feelings of isolation and adherence to medication. Our findings suggest that forums to enhance sharing of experiences and improve age-appropriate HIV knowledge are potentially important in caring for patients with PHIV.

Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda

African journal of AIDS research : AJAR, 2016

There are limited data on the challenges faced by carers, in particular older carers, in managing the difficult task of status disclosure for HIV-positive children. We report findings from qualitative interviews with 18 care dyads of older people and HIV-positive children living in rural south-western Uganda. Our data provide insights into perceptions and norms influencing communication during and following disclosure among both carers and children, including those shaped by gendered expectations of girls' and boys' sexual behaviour. Young participants reported several advantages of knowing their status and showed considerable resilience in the face of HIV disclosure. Better and more support is needed to help health workers and carers (particularly older carers) manage cross-generational communication around HIV disclosure and other related aspects of sexual and reproductive health as critical aspects of children's psychosocial development and well-being.

HIV/AIDS status disclosure increases support, behavioural change and, HIV prevention in the long term: a case for an Urban Clinic, Kampala, Uganda

BMC Health Services Research, 2014

Background: Disclosure of HIV status supports risk reduction and facilitates access to prevention and care services, but can be inhibited by the fear of negative repercussions. We explored the short and long-term outcomes of disclosure among clients attending an urban HIV clinic in Uganda. Methods: Qualitative semi-structured interviews were administered to a purposeful sample of 40 adult HIV clients that was stratified by gender. The information elicited included their lived experiences and outcomes of disclosure in the short and long term. A text data management software (ATLAS.ti) was used for data analysis. Codes were exported to MS Excel and pivot tables, and code counts made to generate statistical data. Results: Of the 134 short-term responses elicited during the interview regarding disclosure events, most responses were supportive including encouragement, advice and support regarding HIV care and treatment. The results show on-disclosing to spouse, there was more trust, and use of condoms for HIV prevention. Only one third were negative responses, like emotional shock and feeling of distress. The negative reactions to the spouses included rejection, shock and distress in the short term. Even then, none of these events led to drastic change such as divorce. Other responses reflected HIV prevention and call for behavioural change and advice to change sexual behaviour, recipient seeking HIV testing or care. Women reported more responses of encouragement compared to men. Men reported more preventive behaviour compared to women. Of the 137 long-term outcomes elicited during disclosure, three quarters were positive followed by behavioral change and prevention, and then negative responses. Men reported increased care and support when they disclosed to fellow men compared to when women disclosed to women. There was better or not change in relationship when women disclosed to women than when women disclosed to men. Conclusions: There is overwhelming support to individuals that disclose their HIV status, especially in the long term. Besides, gender appears to influence responses to HIV disclosure, highlighting the need for gender specific disclosure support strategies.

Disclosure of Parental HIV Status to Children: Experiences of Adults Receiving Antiretroviral Treatment at an Urban Clinic in Kampala, Uganda

AIDS research and treatment, 2017

Limited data are available on the experiences of parental HIV disclosure to children in Uganda. We conducted a qualitative study comprising sixteen in-depth interviews and four focus group discussions with parents receiving highly active antiretroviral therapy. Analysis was done using Atlas.ti qualitative research software. Back-and-forth triangulation was done between transcripts of the in-depth interviews and focus group discussions, and themes and subthemes were developed. Barriers to parents' disclosure included perceptions that children are too young to understand what HIV infection means and fears of secondary disclosure by the children. Immediate outcomes of disclosure included children getting scared and crying, although such instances often gave way to more enduring positive experiences for the parents, such as support in adherence to medical care, help in household chores, and a decrease in financial demands from the children. Country-specific interventions are needed ...