Background: Family caregivers provide the bulk of care to children living with HIV. This places an enormous demand and care burden on the caregivers, who often struggle to cope in various ways, some of which may be maladaptive. This may adversely affect their quality of care. Very few literatures exist in resource-limited contexts on the burden of care experienced by caregivers on who children living with HIV/AIDS depend for their long term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda.
Methods: A mixed-methods cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending ART clinic at a tertiary healthcare facility in Lira district, northern Uganda. Consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically.
Results: Majority of the caregivers 65.5% (74) experienced mild to moderate burden. The mean burden scores significantly differed by caregivers’ age ( P =0.017), marital status ( P =0.017), average monthly income ( P =0.035) and the child’s school attendance ( P =0.039). Accepting social support, seeking spiritual support and reframing were the three most commonly used strategies for coping. Marital status and occupation were respectively positively and negatively correlated with information seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child's care.
Conclusions: Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context.