A cross-sectional study of the magnitude, barriers, and outcomes of HIV status disclosure among women participating in a perinatal HIV transmission study, "the Nevirapine Repeat Pregnancy study".

BACKGROUND: HIV status disclosure is a difficult emotional task for HIV-infected persons and may create the opportunity for both social support and rejection. In this study, we evaluated the proportions, patterns, barriers and outcomes of HIV- 1 status disclosure among a group of women in Uganda. METHODS: An exit interview was conducted one year post-partum for 85 HIV-infected women who participated in a study of HIV-1 transmission rates among NVP-experienced compared with NVP-naïve women in "The Nevirapine Repeat Pregnancy (NVP-RP) Study" at the Makerere University-Johns Hopkins University Research Collaboration, Kampala-Uganda, between June 2004 and June 2006. RESULTS: Of the 85 women interviewed, 99 % had disclosed their HIV status to at least one other person. Disclosure proportions ranged between 1 % to employer(s) and 69 % to a relative other than a parent. Only 38 % of the women had disclosed to their sex partners. Women with an HIV-infected baby were more likely than those with an uninfected baby to disclose to their sex partner, OR 4.9 (95 % CI, 2.0 -11.2), and women were less likely to disclose to a partner if they had previously disclosed to another relative than if they had not, OR 0.19 (95 % CI, 0.14-0.52). The most common reasons for non-disclosure included fear of separation from the partner and subsequent loss of financial support 34 %, and not living with the partner (not having opportunities to disclose) 26 %. While most women (67 %) reported getting social support following disclosure, 22 % reported negative outcomes (neglect, separation from their partners, and loss of financial support). Following disclosure of HIV status, 9 % of women reported that their partner (s) decided to have an HIV test. CONCLUSION: Results from this study show high overall HIV disclosure proportions and how this disclosure of HIV status can foster social support. However, proportions of disclosure specifically to male sex partners were low, which suggests the need for interventions aimed at increasing male involvement in perinatal care, along with supportive counseling.

Contextual, structural, and mental health experiences of children of women engaged in high-risk sexual behaviour in Kampala: a mixed method study.

Children born to women who sell sex for money or commodities may face economic and social insecurity because of their mother's work, particularly in settings where sex work is illegal. From October 2020 to May 2021, we conducted a study with 60 children aged 12-24 years, born to sex workers in Kampala, Uganda. The children took part in 60 semi-structured interviews, 20 life history interviews, and 4 focus group discussions, which were used to explore their social, economic, and mental health experiences and investigate their vulnerabilities and resilience. Quantitative data were collected using REDcap, and descriptive analysis was done using Stata 14. Qualitative data were collected using semi-structured topic guides, and data analysed thematically. We explored findings in relation to a wellbeing framework. The findings showed that children experienced contextual and structural hardships, including incomplete and irregular schooling, a lack of privacy at home, food insecurity, and physical and psychological violence from relatives and sometimes from their mothers. Some children reported mental wellbeing struggles with hopelessness, nervousness, and sadness. Alcohol and drug use were common in most families. Community social network support systems, including neighbours and grandparents, were important; most children had absentee fathers. Some children suspected or knew how their mother earned her income. Resilience for most children was tagged to support from close networks and financial support from the government and civil society. Children of sex workers in Kampala experience structural, contextual, and mental health challenges but have a positive attitude towards the future. It is important to strengthen community support systems for these children and those living in similar circumstances in low- and middle-income countries.

Maximizing participant retention in a phase 2B HIV prevention trial in Kampala, Uganda: The MTN-003 (VOICE) Study.

BACKGROUND: The success of longitudinal trials depends greatly on using effective strategies to retain participants and ensure internal validity, maintain sufficient statistical power, and provide for the generalizability of study results. OBJECTIVE: This paper describes the challenges and specific strategies used to retain participants in a Phase 2B safety and effectiveness study of daily oral and vaginal tenofovir formulations for the prevention of HIV-1 infection in the MTN-003 (VOICE) trial in Kampala, Uganda. METHODS: Once enrolled, participants were seen every 28 days at the research site and their study product was re-filled. Challenges to retention included a mobile population, non-disclosure of study participation to spouse/family, and economic constraints. Strategies used to maintain high participation rates included the use of detailed locator information, a participant tracking database, regular HIV/STI testing, and the formation of close bonds between staff and subjects. RESULTS: We enrolled 322 women out of the 637 screened. The overall retention rate was 95% over a 3 year follow up period. Only 179 (3%) out of the 6124 expected visits were missed throughout study implementation. Reasons for missed visits included: participants thinking that they did not need frequent visits due to their HIV negative status, time constraints due to commercial sex work, and migration for better employment. CONCLUSIONS: With the implementation of multi-faceted comprehensive follow-up and retention strategies, we achieved very high retention rates in the MTN-003 study. This paper provides a blueprint for effective participant retention strategies for other longitudinal HIV prevention studies in resource-limited settings in Sub-Saharan Africa.