HIV Status Disclosure, Stigma and Viral Suppression among Adolescents and Young Adults Living With HIV

Abstract

Introduction: Viral suppression remains the gold standard in determining success in HIV treatment. Adolescents and young adults with HIV (AYHIV) have poorer adherence and viral suppression than adults. Several factors have been associated with viral non-suppression among AYHIV through their influence on adherence. Individual level factors include younger age and male sex, sub-optimal dosing, and HIV-related stigma; interpersonal factors include low social support while health system factors include having treatment support cadre of staff and dedicated adolescent spaces in facilities. There is mixed evidence regarding the influence of social processes (including how one knew their HIV status [i.e., disclosure], stigma, and social support) on viral suppression in AYHIV. The WHO recommends that children between ages 6-12 years are informed of their HIV status through a planned and structured disclosure process involving their caregivers and providers. Few studies have described the disclosure experiences of AYHIV and their preferences especially following the roll out of disclosure guidelines and wider availability of disclosure tools in SSA countries since 2014. Methods: The aims of the dissertation address the following questions: Chapter 1) what is the prevalence and severity of HIV stigma among AYHIV, the co-occurrence of different stigma domains, and modifiable factors associated with HIV stigma? We used cross-sectional survey data from an observational study, Data-Informed Stepped Care (DiSC) to improve Adolescent HIV outcomes, among youth ages 15-24 years. Generalized linear models (GLM) were utilized to estimate the associations between modifiable factors and HIV stigma. Chapter 2) what is the impact of HIV stigma on mental health, treatment adherence and viral suppression? We used the longitudinal survey and routine data from the DiSC study to conduct longitudinal analyses, utilizing GLM for the analysis for viral suppression, and generalized estimating equations (GEE) for the analyses for depressive symptoms and treatment adherence. Chapter 3) what are the adolescent perspectives on the disclosure process, their experiences, preferences and perception of the impact disclosure had on their treatment and other aspects of life? We utilized cross-sectional survey data from the Adolescent Transition to Adult Care for HIV-infected Adolescents in Kenya (ATTACH) study for AYHIV ages 10-24 years, in addition using GLM to assess associations between modifiable factors associated with the disclosure process and satisfaction with disclosure. Results: Chapter 1: The mean overall stigma score for the 1,011 AYHIV was 25 (range: 10-50). The majority (88%) reported anticipated stigma, 48% perceived community stigma, 36% experienced stigma and 24% internalized stigma. Factors associated with higher stigma levels were AYHIV attending general/adult clinics compared to those in adolescent clinics, AYHIV having dropped out of school, being in a sexual relationship, exposure to violence. Some caregiver involvement in HIV care, and being in a support group were associated with lower mean stigma levels. Chapter 2: Among the 1,011 AYHIV, there were significant increments in risk of depressive symptoms, non-adherence and having a detectable viral load (>50 copies/ml) for every 1 standard deviation increase in stigma scores. Experienced and anticipated stigma were associated with detectable VL , while internalized and perceived community stigma were associated with depressive symptoms. Chapter 3: Majority of the 375 AYHIV enrolled were disclosed to by providers, although 53% preferred that caregivers performed disclosure. Three-quarters preferred disclosure to be completed by age 12 years. Nearly three-quarters of AYHIV reported they were ready for disclosure when it happened, and 83% were satisfied with the process. Majority also reported that they felt supported by the clinic and caregivers pre-and post-disclosure. Lower support was associated with lower disclosure satisfaction. AYHIV reported that disclosure positively influenced their ART adherence. Conclusions: The studies in this dissertation identify key factors that may predict HIV stigma, and are likely amenable to interventions. This includes clinic structures that favor provision of adolescent friendly care, the school environment, and caregiver involvement in HIV care. The significant impact of HIV stigma on mental health, health behaviors and treatment outcomes demonstrated is an important catalyst for development of anti-stigma interventions. Lastly, we identified ways to improve the disclosure experience for AYHIV, especially through enhanced caregiver and clinic support throughout the process.