A longitudinal and qualitative analysis of caregiver depression and quality of life in the Cape Town adolescent antiretroviral cohort

Abstract

• Depression in caregivers of adolescents living with perinatal HIV (PHIV) was associated with poor physical health, poor overall quality of life and externalizing and internalizing behaviour problems in PHIV adolescents. • However, depression, physical health and family resources in caregivers of PHIV adolescents improved significantly longitudinally. • Improved quality of life was associated with less depression and improved access to family resources and social support. • Main concerns of caregivers include educational/learning and health problems in PHIV adolescents. This study aimed to investigate depression and quality of life longitudinally in caregivers of adolescents with perinatally acquired HIV (PHIV) enrolled in the Cape Town Adolescent Antiretroviral Cohort (CTAAC). Depression, socioeconomic factors and quality of life were assessed in caregivers (n=121) at baseline and 36 months follow-up using the Centers for Epidemiological Studies Depression Scale (CESD), the Family Resources Scale (FRS), Family Support Scale (FSS), and the World Health Organization's Quality of Life Scale (WHOQoL). Internalizing and externalizing behaviors in PHIV adolescents were assessed using the Child Behaviour Checklist (CBCL). Qualitative analysis was conducted to highlight key concerns raised by caregivers in caring for PHIV adolescents. CESD was significantly lower at follow-up compared to baseline (p=0.001), with FRS (p=0.003) and WHOQoL physical health (p=0.038) significantly higher at follow-up. Higher CESD scores were predicted by increased CBCL internalizing (baseline: p=0.002; follow-up: p=0.021) and externalizing behavior (baseline: p=0.010; follow-up: p=0.015) in PHIV adolescents and decreased WHOQoL physical health (baseline: p=0.001; follow-up: p=0.016) and WHOQoL overall quality of life (baseline: p=0.003; follow-up: p=0.019). Higher WHOQoL Total Score was predicted by lower CESD scores (baseline: p<0.001; follow-up: p=0.010) and higher FRS (p<0.001) and FSS (baseline: p<0.001; follow-up: p=0.001). Qualitative analysis indicated that caregivers’ main concerns were PHIV adolescent educational and health problems. Self-report measures and small sample size. This study highlights the need for adequate intervention strategies to provide resources and social support to caregivers of PHIV adolescents in order to improve their mental health.