Transitioning Adolescents to HIV Self-Management in Zambia (Known as: Project YES: Youth Engaging for Success)

BACKGROUND/INTRODUCTION While the literature on pediatric chronic illnesses often emphasizes the needs of adolescents transitioning from pediatric to adult care, there is no published literature on interventions to support HIV-positive adolescents transitioning to adult care and/or HIV self-management in sub-Saharan Africa (SSA). Similarly, there is virtually no data on how to best engage families and peers to support youth (YLHIV) with their care needs in SSA, despite the known impact families and peers have on adolescent health. For example, a 2015 review found only 14 studies on adolescents living with HIV (ALHIV) transitioning to adult care, all of which were conducted in the US or UK and the majority of which were qualitative studies with sample sizes of 50 participants or fewer. A 2016 systematic review examined the literature to assess the effectiveness of self-management interventions for young people across chronic illnesses. Out of 42 randomized controlled trials included in the review, none were conducted in SSA. The authors note that most interventions focused on the medical aspects of self-management rather than psycho-social issues. The authors also discuss the potential role for online peer support. These findings correspond with other articles that define three specific aspects of self-management: medical management (e.g., treatment adherence), role management (e.g., social participation), and emotional or identity management (e.g., feelings, stigma).

Despite this lack of evidence on how to support youth, the need remains great. Preliminary analysis of routine viral load (VL) testing conducted among ALHIV clinic attendees at the Arthur Davison Children's Hospital (ADCH) in Ndola, Zambia revealed that around 50% of ALHIV have viral failure defined as 1000 copies/ml or higher. This staggering percentage underscores the urgent need for assistance with care for this population.

This study will address this gap by testing a peer-mentoring program to implement the AIDS Support & Technical Assistance Resources (AIDSTAR-One) toolkit for transition (https://aidsfree.usaid.gov/sites/default/files/final_alhivtoolkit_web.pdf). AIDSTAR-One developed this toolkit as a resource for health care providers to support youth transitioning to HIV self-management as well as their caregivers. The current version, released in 2014, includes a transition readiness checklist designed for health care providers to monitor an adolescent's ability to self-manage his/her HIV. The toolkit also has corresponding modules that cover 10 subject areas deemed critical for youth's successful HIV self-management, including psychosocial development, mental health, sexual and reproductive health, alcohol and substance abuse, beneficial disclosure and clinical considerations.

While there have been no large scale implementations of this toolkit, the initial version was piloted in Kenya in 2012 "to inform final adaptations prior to dissemination" A survey conducted among 17 health care and community care providers in Kenya who were trained on the AIDSTAR-One toolkit, found that a majority were satisfied with the kit. A key concern expressed, however, was the time needed to implement the toolkit approach in settings where providers are overburdened. A subsequent key recommendation made by providers during this pilot evaluation was to expand the use of the toolkit to community-based providers, including specifically peer counselors or mentors. Peer mentors, especially those who are trained well and given paid positions, have been effective in other settings, such as the Mothers to Mothers program in South Africa r the Restless Development program in Zambia. In South Africa, paid mentors who are mothers themselves and had undergone prevention of mother to child HIV transmission (PMTCT) learned concrete employable skills and were integrated into the health care system to mentor women undergoing PMTCT. In Zambia, a youth intervention was conducted that placed young adults (18 to 24 years) in government schools to teach a Ministry of Education life skills course. Again, these youth mentors were paid, well trained, and given a position within the system. Results from an evaluation found that students in the schools with youth mentors had more HIV and reproductive health knowledge, and lower levels of stigma and sexual risk-taking behaviors, than their peers in schools without youth mentors. In this study, peer mentors will be integrated into the health care system to implement the toolkit.

This study will further explore the potential integration of violence-related content into the intervention. Despite limited existing literature on violence victimization among HIV-positive youth in SSA, studies among adults in SSA and elsewhere have documented negative impacts of violence victimization on HIV disclosure, linkage to care, and engagement and retention in care. A deeper understanding is needed of the types of violence experienced by youth, the influence of such violence on youth's HIV care and treatment, and the potential role of the adapted AIDSTAR-One toolkit for transition in addressing such violence.