As more adolescents and young adults living with HIV survive into adulthood, they face the challenge of transitioning from pediatric health services to HIV self-management and adult care. This transition is particularly important as many adolescents have poor adherence to antiretroviral therapy (ART), leading to low rates of viral suppression and a greater risk of HIV-related mortality. Little is known about how best to support these youth in developing better self-management skills as they transition into adulthood.
Project SOAR aims to address this gap by piloting Project YES! (Youth Engaging for Success), a peer mentorship initiative that strengthens the capacity of health systems and families to support youth in managing their own healthcare while planning for their future. The project builds upon the idea that young people living with HIV who have successfully transitioned to self-management and adult care are uniquely suited to encourage their peers to do the same.
|“I’ve learned a lot from being involved in Project YES!,” explains Dr. Sam Miti, Consultant Pediatrician at Arthur Davison Children’s Hospital (ADCH) and a study co-investigator. “I’ve learned that adults are not the complete solution. Young people need help and get help from friends. As one youth said to me, ‘you give treatment, but we give hope.’”|
Dr. Miti is working with the study co-PIs, Drs. Julie Denison of Johns Hopkins University and Jonathan Mwansa of ADCH, and the Project YES! study team to evaluate the peer mentoring strategy among youth ages 15–24 years living with HIV in Ndola, Zambia. Of the 276 youth enrolled in the study, half participated in the program for six months (primary intervention group), while the other half served as the comparison group during the first six-month period and have since started receiving the intervention.
Peer mentors are HIV-positive young adults between the ages of 20 and 26 who have successfully transitioned to self-management. The eight mentors (4 males and 4 females) work as paid employees of Project YES! and received training to conduct client sessions within the health facility using resources adapted from the “Toolkit for Transition of Care and Other Services for Adolescents Living with HIV,” developed by AIDSTAR-One and from FHI360’s “Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV.” Peer mentors meet with youth participants both in monthly one-on-one meetings and in group meetings.
|“Everyone shares their experiences in a group meeting, and you are able to hear what others are going through,” explained Daniel (name changed to protect confidentiality), a 24-year-old male mentor. “We exchange our thoughts on how we overcome obstacles, whether it is stigma or how we are treated in the community.”|
Health care providers at each of the study sites meet with the youth and their caregivers to introduce the study. The health care providers also host three support group meetings for caregivers of youth participants over the six-month program.
While certain healthcare settings in Zambia offer space for youth to discuss their health, they are not focused specifically on the needs of youth living with HIV. Study Coordinator and Research Associate Virginia Burke explains the uniqueness of Project YES: “In youth-friendly corners in the clinics, HIV is largely discussed in terms of prevention rather than managing medication, social stigma, and disclosure. Our program creates a space where conversations about the latter can occur.”
Not only does Project YES facilitate the transition of youth participants to adult care, but also inspires a mutual learning experience among the peer mentors and mentees.
|“Because I’ve been living with HIV, what I love most about being a peer mentor is that I share my experience and hear other’s experiences,” described Daniel. “As I learn from them, I learn myself.”|
Daniel also described his sense of connection with his fellow mentees in their efforts to remain adherent to treatment. “I am able to say, if this person can do this, I too can do this. It has helped my own adherence.”
Dr. Miti believes that the evaluation will provide important insights about the role peer mentorship can play in helping youth take ownership of their healthcare while looking toward the future.
|“From my experience over the last 11 years as a clinician, I have seen that young people need platforms where they can express their views, be heard by others willing to listen, and be part of the solution.”|
The study is currently in the second, six-month intervention period through April 2019. The team is in the process of collecting and analyzing quantitative and qualitative data on implementation and the impact of Project YES on viral load suppression and other social and behavioral outcomes. Results will be available by September 2019.