A qualitative analysis of self-management needs of adolescents and young adults living with perinatally acquired HIV in rural, southwestern Uganda.

The number of adolescents living with HIV remains high in sub-Saharan Africa with poorer HIV treatment outcomes among adolescents and young adults compared to individuals in other age groups. For adolescents and young adults living with perinatally acquired HIV (AYLPHIV), the transition from pediatric to adult HIV care is a particularly high-risk period. We conducted a qualitative study to understand self-management needs of AYLPHIV in rural, southwestern Uganda as they prepare to transition to adult HIV care in order to inform relevant interventions that can enable AYLPHIV acquire the necessary skills to manage their illness as they age into adulthood. We conducted 60 in-depth interviews with AYLPHIV (n = 30), caregivers (n = 20) and health care providers (n = 10) from the HIV clinic at Mbarara Regional Referral Hospital. We used an interview guide that focused on perceptions about transition to adult HIV care, challenges with transitioning, navigating HIV care, and self-management needs for AYLPHIV (from the perspectives of AYLPHIV, their caregivers, and health care providers). We used thematic analysis to identify themes related to AYLPHIV's self-management skills. We identified several self-management needs that we grouped under two major themes; social support and empowerment for AYLPHIV to assume responsibility for their own health and to navigate adult HIV care independently. The sub-themes under social support were information support, instrumental support, and emotional support as the sub themes while sub-themes under empowerment included self-advocacy skills, interpersonal skills, self-care skills, and disclosure skills. Taken together, these findings indicate that AYLPHIV need to be supported and empowered to maximize their chances of successfully transitioning to adult HIV care. Support comes from peers and caregivers. AYLPHIV require knowledge about their HIV status and empowerment with different skills including: self-advocacy skills, interpersonal skills, self-care skills, and HIV status disclosure skills, in order to assume responsibilities related to independent HIV care.

Challenges and Fears of Adolescents and Young Adults Living with HIV Facing Transition to Adult HIV Care.

Adolescents and young adults living with perinatally-acquired HIV (AYLPHIV) have poor outcomes along each step of the HIV care continuum due to challenges in seeking care and advocating for themselves. The transition from paediatric to adult HIV care is a particularly high-risk period for AYLPHIV in rural Uganda. We conducted in-depth interviews with AYLPHIV (n = 30), caregivers (n = 10), and healthcare providers (n = 10) to understand challenges facing AYLPHIV during the transition from paediatric to adult HIV care. Themes were identified by thematic content analysis. Transition-related challenges and fears included difficulty navigating the adult HIV clinic; loss of informational support; long wait times at the adult HIV clinic; lack of privacy, and fear of HIV status disclosure and stigma; and loss of support from caregivers, and health care providers. Before transitioning to adult HIV care, AYLPHIV should be adequately prepared and given appropriate information to help them navigate adult HIV care.

Perspectives About Transition Readiness Among Adolescents and Young People Living With Perinatally Acquired HIV in Rural, Southwestern Uganda: A Qualitative Study.

ABSTRACT: Despite the availability of antiretroviral therapy, treatment outcomes are worse among adolescents and young adults living with perinatally acquired HIV (AYLPHIV). These disparities are magnified during the transition from pediatric to adult-based HIV care. We conducted in-depth interviews with AYLPHIV aged 15-24 years ( n = 30), their caregivers ( n = 10), and health care providers ( n = 10). All participants provided written assent and/or informed consent to enroll. Thematic content analysis was used to identify and analyze themes relevant to transition readiness. We grouped perspectives on transition readiness into 4 themes: preparation for transition, communication between stakeholders, social support, and timing of transition. AYLPHIV in sub-Saharan Africa who are facing a transition to adult HIV care should be equipped with relevant information about their illness, self-advocacy skills, and support from caregivers and health care providers to remain engaged in HIV care.

How informal healthcare providers improve uptake of HIV testing: qualitative results from a randomized controlled trial.

OBJECTIVE: Uganda is HIV-endemic with a prevalence of 5.7%. Lack of epidemic control has been attributed to low engagement with HIV testing. Collaborating with informal healthcare providers, such as traditional healers, has been proposed as a strategy to increase testing uptake. We explored acceptability and implementation of an HIV testing program where traditional healers delivered point-of-care testing and counseling to adults of unknown serostatus (clinicaltrials.gov NCT#03718871). METHODS: This study was conducted in rural, southwestern Uganda. We interviewed participating traditional healers ( N  = 17) and a purposive sample of trial participants ( N  = 107). Healers were practicing within 10 km of Mbarara township, and 18+ years old. Participants were 18+ years old; sexually active; had received care from participating healers; self-reported not receiving an HIV test in prior 12 months; and not previously diagnosed with HIV infection. Interviews explored perceptions of a healer-delivered HIV testing model and were analyzed following a content-analysis approach. RESULTS: Most participants were female individuals ( N  = 68, 55%). Healer-delivered HIV testing overcame structural barriers, such as underlying poverty and rural locations that limited use, as transportation was costly and often prohibitive. Additionally, healers were located in villages and communities, which made services more accessible compared with facility-based testing. Participants also considered healers trustworthy and 'confidential'. These qualities explain some preference for healer-delivered HIV testing, in contrast to 'stigmatizing' biomedical settings. CONCLUSION: Traditional healer-delivered HIV testing was considered more confidential and easily accessible compared with clinic-based testing. Offering services through traditional healers may improve uptake of HIV testing services in rural, medically pluralistic communities.

Shortening "the Road" to Improve Engagement with HIV Testing Resources: A Qualitative Study Among Stakeholders in Rural Uganda.

In HIV-endemic areas, traditional healers are frequently used with, or instead of, biomedical resources for health care needs. Studies show healers are interested in and capable of supporting patients in the HIV care cascade. However, adults who receive care from healers have low engagement with HIV services. To achieve epidemic control, we must understand gaps between the needs of HIV-endemic communities and the potential for healers to improve HIV service uptake. This study's objective was to characterize stakeholder perspectives on barriers to HIV testing and approaches to mitigate barriers in a medically pluralistic, HIV-endemic region. This study was conducted in Mbarara District, a rural area of southwestern Uganda with high HIV prevalence. Participants included HIV clinical staff, traditional healers, and adults receiving care from healers. Fifty-six participants [N = 30 females (52%), median age 40 years (interquartile range, 32-51.5)] were recruited across three stakeholder groups for minimally structured interviews. Themes were identified using an inductive, grounded theory approach and linked together to create a framework explaining stakeholder perspectives on HIV testing. Stakeholders described the "road" to HIV testing as time-consuming, expensive, and stigmatizing. All agreed healers could mitigate barriers by delivering HIV testing at their practices. Collaborations between biomedical and traditional providers were considered essential to a successful healer-delivered HIV testing program. This work describes a novel approach to "shorten the road" to HIV testing, suggesting that traditional healer-delivered HIV testing holds promise to expand uptake of testing among communities with limited access to existing programs.