Quality-of-Life (QoL) of Indonesian Children Living with HIV: The Role of Caregiver Stigma, Burden of Care, and Coping

Abstract

Background: Treatment of children with HIV infection has increased rapidly by increasing the life span of HIV patients from baby to adult. Improving the quality-of-life (QoL) in children living with HIV is a priority of HIV management in children and caregivers of children living with HIV have important roles. Caregiver stigma, caregiver burden, and caregiver coping affect caregivers in treating children living with HIV.

Objective: Analyzing the association of caregiver stigma, caregiver burden, and caregiver coping on QoL of Indonesian children living with HIV.

Methods: Participants in this study were caregivers of Indonesian children living with HIV. Participants were measured for caregiver stigma, caregiver burden, caregiver coping, and QoL of Indonesian children living with HIV. The instrument used in measuring caregiver stigma was people living with HIV/AIDS and caregiver questionnaire, caregiver burden used Zarit Burden questionnaire, caregiver coping used F-COPES questionnaire, and QoL used PedsQL for children aged 2-18 years old. Measurement data were analyzed using logistic regression and independent t tests with P<0.05.

Results: Indonesian children living with HIV in this study had an average age of 7.7±3.68 years and average participant age of 40.2±11.26 years. All participants stated that Indonesian children living with HIV tend to keep their health status confidential. Most QoL of Indonesian children living with HIV was good (71.7%), caregiver stigma value was 21.7±2.06, and caregiver burden level was moderate, of 50.9%. However, there was no significant association between caregiver stigma (β=0.064; P=0.548) and burden level (β=0.058; P=0.593) on QoL. On the other hand, caregiver coping value was 77.2±7.30, and there was a significant association of caregiver coping on QoL (β=-0.196; P=0.049).

Conclusion: There is an association of caregiver coping on QoL of Indonesian children living with HIV, in which the higher the caregiver coping, the lower the QoL. Meanwhile, there is no significant association of caregiver stigma and burden on QoL of Indonesian children living with HIV.

Keywords: caregiver burden; caregiver coping; caregiver of children living with HIV; caregiver stigma; quality-of-life.