Caregiver's Burden of Children Living with HIV on Antiretroviral Therapy at an Urban Setup

CONTEXT: Availability of antiretroviral therapy (ART) has helped to decrease morbidity and increase the longevity of children living with Human Immunodeficiency Syndrome (CLHIV/CLHA). These children require the special involvement of family members for adherence to care and support programs. Long-term caregiving stress can result in physical, social, emotional, and medical consequences for both the caregiver and the CLHIV. This study explores the burden and needs for support among CLHIV caregivers. METHODS: A cross-sectional study was conducted at an ART Centre of Tertiary level Health Care Institute among 126 caregivers of CLHIV pretested and piloted semi-structured questionnaire and Zarit Burden Interview Scale (ZBIS) were employed to assess study objectives. Descriptive statistics and caregiver burden scoring were calculated. ZBIS score of 22 and above were considered additional burden for caregivers. RESULTS: Mean age of caregivers was 34 ± 7.15 years. Among 126 CLHIV caregivers, 116 were female, while 110 had positive HIV serostatus. Ninety-seven percent disclosed their and the child's status to one or more family members. Mean caregiver ZBIS was 25 ± 7.08 with 71.5% caregivers having mild-to-severe levels of burden. Around 85% of caregivers knew correctly about four routes of HIV transmission although 8.7% had misconception regarding HIV transmission. CONCLUSIONS: ZBIS assessment shows emotional, financial, and future of child-related burden among CLHIV caregivers. There were gaps in the knowledge about HIV transmission, care and support needs of the CLHIV. The acquisition of HIV from parents in CLHIV suggests the need of strengthening the prevention of parent-to-child transmission program in Indian settings.