Family Connections Cluster RCT in Zambia: Impact of a Youth and Caregiver Intervention on HIV Management Among HIV-positive Youth (Ages 15-21)

BACKGROUND/INTRODUCTION

A dearth of programs exist that actively promote HIV self-management among older adolescents and young adults (AYA) in sub-Saharan Africa (SSA). Literature on chronic illness has identified the following skills for promoting self-management: problem-solving, decision-making, resource utilization, formation of a patient-provider partnership, action planning, and self-tailoring skills to one's own situation. While there is an international call to support HIV self-management among adolescents, the reality is that AYAs living with HIV in SSA often do not have access to youth-specific services or opportunities to build life skills. Some clinics hold monthly AYA peer group meetings, however such meetings are typically vulnerable to changes in staff and funding; are often not systematically incorporated into service provision; and do not involve AYAs' family members.

There is also lack evidence on how HIV self-management differs by AYAs' developmental characteristics. Adolescence is a period characterized by intense physical, cognitive, and emotional growth and a desire for independence. Furthermore, data show that some youth living with HIV experience delayed cognitive development, particularly youth that are perinatally infected with HIV. Despite these data, studies rarely examine program impact accounting for variations in AYAs' development. Furthermore, evidence exists that managing chronic illnesses has negative impacts on caregivers and families, particularly in low-income and highly stigmatized environments.

Peer group interventions, however, show promise in reducing HIV-related stigma in SSA among adults and in supporting adolescent ART adherence. Given that HIV is a highly stigmatized chronic illness, peer groups provide a safe environment in which to share experiences and learn from others who understand the day-to-day reality of living with HIV. There is also a growing body of literature from SSA, including Zambia, calling for interventions to involve families in supporting AYA living with HIV to self-manage HIV and to promote family involvement as AYA transition into adulthood and adult HIV services. While experts agree on the need for family-centered approaches and peer support groups, few family-based interventions exist that specifically address the needs of older AYAs aged 15-21 years.

In response to the lack of interventions to promote HIV self-management among AYA that harness the support of caregivers, the study team developed Family Connections- a family group-based intervention. In the study team's earlier pilot study of Family Connections the team adapted an existing adolescent support group guide called Positive Connections (The United States President's Plan for AIDS Relief using mixed-methods formative research. The study team also updated the AYA support group materials and developed a corresponding support group component for caregivers. The feasibility and acceptability of Family Connections was tested in an randomized controlled trial (RCT) among older adolescents (15 to 19 years) and their caregivers in two clinics in Ndola, Zambia. Fifty adolescent/caregiver pairs (100 individuals) were enrolled. Study results found that Family Connections was highly feasible and acceptable. Of the 24 adolescent/caregiver pairs assigned to the intervention arm, 88% attended eight or more of the 10 Family Connections sessions together, and most adolescents (96%) and all caregivers would recommend the intervention to their peers. Although not powered to find differences in outcomes, the prior pilot study showed a signal for efficacy in reducing adolescents' HIV-related feelings of worthlessness (I: 54% to 22% vs. C:38% to 35%, p=0.06) and shame (I: 58% to 30% vs. C:54% to 58%, p=0.07), and reducing caregiver burden (mean scores: I: 0.16 to -0.25 vs. C: -0.15 to -0.25, p=0.08).