Barriers to Belonging: How Stigma Disrupts Social Roles for Malawian Adolescents Living with HIV and Opportunities for Change

BackgroundHuman immunodeficiency virus (HIV) stigma has detrimental impacts on HIV care outcomes, mental health, and psychosocial well-being. Adolescents living with HIV (ALWH) in Malawi experience HIV stigma as gossip, insults, and physical distancing, contributing to decreased HIV care engagement and mental health issues including depression, substance use disorders, and suicidality. To inform future stigma-reduction interventions for this vulnerable population, we investigate how HIV stigma impacts an ALWH's ability to meaningfully participate in their social roles and responsibilities.MethodsThis qualitative study recruited 68 participants from three government healthcare facilities in Lilongwe, Malawi. Our study sample consisted of 13 ALWH aged 13-19 years who screened positive for depressive symptoms on the Beck Depression Inventory-II with a score ≥13 (5 females, 8 males) and 55 stakeholders aged 13-54 years (38 females, 17 males). Guided by the What Matters Most Framework, we conducted 13 in-depth interviews and 10 focus group discussions with ALWH, adolescent peers without HIV, caregivers, teachers, HIV care providers, and mental health providers to examine culturally relevant manifestations of HIV stigma and its impact on ALWH's ability to fulfill socially expected roles. We organized data into four life domains-home, community, school, healthcare-which we analyzed to understand how stigma hinders social role performance, to assess how role fulfillment shapes stigma, and to identify strategies to reduce stigma.ResultsALWH identified their most salient social roles as being a family member, church member, student, friend, and active participant in one's healthcare. In each life domain, HIV stigma negatively impacted an ALWH's ability to meaningfully engage in their prescribed roles, resulting in ostracization from family and friends, displacement from one's home or school, disengagement from church, poor school performance and attendance, and reduced retention in HIV care. Key recommendations from study participants included engagement and collaboration with caregivers, increasing counseling services for ALWH with peer support, promoting community awareness and education, and redress systems for acts of stigmatization.ConclusionsThis study revealed that HIV stigma disrupts an ALWH's ability to fulfill key social roles in home, community, school, and healthcare settings. Stigmatization from caregivers within the home has the most detrimental impact on ALWH, identifying caregivers as critical part of stigma-reduction efforts. To effectively address stigma across all life domains, targeted stigma-reduction is needed, particularly through specialized counseling that addresses the unique aspects of ALWH personhood, and community education to disseminate accurate knowledge.