School of Public Health
Zambia - Transitioning Adolescents to HIV Self-management in Zambia
The overall goal of this study is to test a peer mentoring approach to implementing the USAID-funded, AIDSTAR-One â€œTransitioning of Care & Other Services for Adolescents Living with HIV Toolkitâ€ (Duffy, H, & Sharer, 2014). The purpose of this intervention is to improve HIV viral suppression and other HIV outcomes among adolescents living with HIV (ALHIV) as they transition to self-management and adult HIV care and treatment. Adolescence represents one of the greatest periods of human growth, second only to infancy, and is characterized by physical, social, emotional, and cognitive development (Sanders, 2013). Adolescence also represents a challenging time in terms of chronic illness management, with people in this age group often experiencing poor adherence to antiretroviral treatment (ART) (Ding et al., 2009; Nachega et al., 2009), less viral suppression (Ferrand et al., 2016; Jobanputra et al., 2015), and increased HIV-related mortality (WHO, 2013). In response, there has been a call to action and a body of literature on the need to support adolescents with chronic illness, and their caregivers, to develop self-management skills as they transition into adulthood, a process that for some adolescents, involves a physical transition from a pediatric to an adult care facility (Chakraborty et al., 2013; Gilliam et al., 2011; WHO, 2013). To date, however, despite the fact that 85% of the worldâ€™s ALHIV live in sub-Saharan Africa (SSA), there is no published literature on the effectiveness of intervention strategies for supporting ALHIV to transition to self-management, and when applicable, to adult HIV care located somewhere else. In addition, in countries such as Zambia, adult settings are the only source of HIV care available to the majority of adolescents. This study responds to these challenges and gaps to test an intervention to strengthen the capacity of health systems and families to support ALHIV to develop skills to manage their HIV and achieve HIV viral suppression. The specific objectives of the study are to:
1) Examine the experiences of adolescents and their families and health care providers when transitioning from a pediatric family centered HIV clinic in one location to an adult HIV clinic located elsewhere. . Our earlier USAID-funded study provided details on HIV self-management among adolescents who have only ever attended adult clinics or the pediatric family centered HIV clinic. (Denison et al., 2015). This previous research, however, did not investigate the experiences of adolescents who physically transitioned from a pediatric family centered HIV clinic to a physically separate adult clinic. In addition, currently, there is no published data from SSA about these adolescents who have undergone a physical transition to an adult clinic in a new location. The qualitative data collection proposed here will augment the teamâ€™s previous research findings to refine an intervention that serves adolescents who are transitioning into adulthood and self-management whether they have always attended adult HIV care facilities (formative data available from previous studies) or will need to physically move from a the pediatric family centered clinic to an adult HIV clinic located elsewhere. This objective will be achieved by conducting qualitative in-depth interviews with young adults who have transferred from a pediatric clinic to an adult clinic physically located elsewhere (n=20), as well as their family caregivers (n=20, if applicable) and health care providers (n=10) who participated in the transition process. The data will then inform the refinement of the intervention approach and provide the basis for the development of the peer mentoring curriculum that will guide the training of the peer mentors to support ALHIV in objective 2.
2) Assess the impact of a peer mentoring approach to implementing the AIDSTAR-One toolkit for transition (Duffy et al., 2014) for ALHIV and their caregivers. The study will assess impact on viral suppression and other HIV outcomes among transitioning adolescents in different care facility settings (e.g., pediatric hospital, adult hospital, and primary care facilities). A randomized controlled trial with a stepped wedge design will be used with randomization occurring at the individual level among 250 adolescents (15-19 years) attending care in five facilities. After baseline data collection (survey and blood draw), individuals in each of the selected facilities will be randomly assigned, to either a six-month intervention or the control arm. After the completion of the six month intervention, and the subsequent follow-up assessment across both study arms, the comparison group will undergo the intervention for six months, while the intervention arm will undergo a maintenance phase. Assessments, including a survey and a blood draw for viral load testing, will occur at baseline, at the end of the first six months, and at the end of 12 months.
This study will produce rigorous data that can inform policy makers, programs, and communities â€” in SSA and globally â€” on the effectiveness of a peer mentoring/toolkit approach for viral suppression among ALHIV, as well as process data on the implementation of this strategy.
Global Health PI/Mentor: Julie Denison
Having previously lived in South Africa for three years, I was excited to return to the region for my placement in Ndola, a small city in the Copperbelt Province of Zambia. My project centered on supporting the launch of an individually randomized controlled trial, called Project YES (Youth Engaging for Success). Co-led by my JHSPH advisor, Dr. Julie Denison, the trial will assess the impact of a 6-month peer mentoring intervention for transitioning HIV-positive youth ages 15-24 towards self-management of their illnesses. I was particularly eager to support the launch, given that the trial will provide the infrastructure under which I will carry out my dissertation research.
Upon arrival, I was greeted at the airport by Dr. Sam Miti, Head of Clinical Care at the Arthur Davison Children’s Hospital (ADCH) and Co-Investigator on the Project YES trial. I had met Dr. Miti several months previously, when he and Dr. Mwansa had visited JHSPH for study planning purposes. Dr. Miti brought me to ADCH, where I would be accommodated during my stay. As the only children’s hospital in Zambia, ADCH also served as the primary trial implementing partner and the site of the Project YES study offices. The following morning, I met the rest of the study team, consisting of Progress, Lindy, Christine, and Jane. I spent most of my 6-week stay working with them in the two-room study offices.
Although we had anticipated that I would support with participant recruitment and baseline survey administration, we experienced delays. Instead, our focus centered on submitting for ethics approval (both at JHSPH and Eres Converge in Zambia), securing a venue for the 10-day peer mentor training, and inputting into the curriculum for youth. I recognized that project delays are common in carrying out trials. But I also gained greater appreciation for the reasons for the delays. Our team spent about three weeks, for example, translating the questionnaires and consent forms into Bemba. To ensure the translations were accurate, the team enlisted the support of various groups of youth and adults from the community. Each day, I observed active debates about which translation to use, given that a line in English could be translated into Bemba in several ways. Despite the lengthy process, it was crucial that we end up with accurate translations to ensure that we would ultimately measure what we intended to measure.
Left: HIV-positive youth treated at the ART clinic of the Arthur Davison Children’s Hospital, representing the target population of the Project YES study. Right: Arthur Davison Children’s Hospital, the primary site for the randomized controlled trial I helped to launch during my GHEFP and the site for my dissertation research in Ndola, Zambia.
A particularly eye-opening experience pertained to my own dissertation research. I plan to examine experiences of violence victimization among the HIV-positive youth and how these experiences relate to the youth’s HIV care and treatment practices. Given that we will ask youth specific questions about a range of violent acts on the study questionnaires, it was essential to create a safety plan for youth who disclose experiences of violence. While in Ndola, I met with three of the four clinic partners on the study to discuss how best to handle youth referrals. I discovered that each clinic had very different methods for handling violence referrals and that we would need to ensure that representatives from the clinics were fully comfortable with our safety plan prior to the study’s start. The in-person meetings were essential in providing feedback to inform both our ethics submissions and our planned engagement of clinic representatives. They also drove home for me the importance that our study team—both in Zambia and at JHSPH—remain intimately in tune with the referral process and act as a key supporter to ensure that youth receive the care they need.
Perhaps the most valuable aspect of my time in Ndola was the relationships I built with the study team and partners. I am fortunate to continue my communication with the team over the coming year, as the trial is rolled out. I also plan to return to Ndola in about a year to conduct qualitative research for my dissertation, at the tail end of the trial. As such, my time spent in Ndola in July and August offered an invaluable opportunity to understand the study context and to partner with the in-country study team. I am excited to build on these experiences and relationships through the remainder of my PhD program.
Me and Project YES study team members outside of our study offices at the Arthur Davison Children’s Hospital.