Burden of caring for children living with human immunodeficiency virus in a semi-rural South African community

BACKGROUND: Caregiver burden influences the well-being of children living with human immunodeficiency virus (HIV) who may experience disabilities as a result of the virus, comorbidities and treatment. Overall health, psychological well-being, finances, social life and the relationship with the child being cared for influence the burden of care. This study aimed to investigate the burden of care on caregivers of children living with HIV who may be experiencing disabilities. METHODS: An analytical cross-sectional survey using the Zarit Burden questionnaire was conducted with caregivers of children living with HIV who were accessing care from a semi-rural healthcare setting between May and August 2019. A socio-demographic survey supplemented the Zarit Burden instrument. Descriptive statistics were used to determine burden of care and associations between the demographic profile variables of caregivers and the burden of care, with significance set as p < 0.05. RESULTS: Thirty-eight caregivers completed the survey. Although 44.7% reported no burden of care, 36.8% reported mild-to-moderate burden and 18.4% moderate-to-severe burden of caring for children living with HIV. The only significant association was between caregiver health status and burden of care (p = 0.034). CONCLUSION: Although the burden of care in caregivers ranged between mild to severe and was directly associated with the caregiver’s health status, the findings of this study highlight a need to assess caregiver burden in all caregivers of children living with HIV so that appropriate referral to professionals for counselling and support can be initiated. Because caregiver burden affects the care offered to children, professionals need to integrate their well-being into healthcare.