Quality of life of caregivers for children with sickle cell disease attending Mulago National Referral Hospital

Abstract

Introduction: A global estimation shows that 4.4 million people have sickle cell disease (SCD) and 75% of the people with this disease are found in Sub-Saharan Africa. In Uganda the overall prevalence of the sickle cell trait is 13.3% and at least 15,000 babies are born per year with the disease. SCD is a chronic condition therefore affected children depend on caregivers (parents or guardians) for additional care and monitoring of their health. The role of caregiving has been described as a burden and can influence the quality of life (QOL) of caregivers.

Objectives: This study sought to determine the QOL and associated factors among caregivers of children with SCD attending Mulago Hospital.

Methods: This study employed a cross-sectional study design where the eligible 630 caregivers aged 18years and above were selected using systematic sampling. Data collection was done using interviewer administered data collection tool with two sections including socio-demographic section and WHOQOL-BREF section used to measure the QOL. Data was double entered into EpiData version 3.2 and analysed using STATA version 13 at univariate using descriptive statistics then at bivariate and multivariate levels using linear regression with QOL as the outcome.

Results: The caregivers had a mean QOL of 54.6 (SD=19.2) with a range of 20 to 100. The social relationships domain had the lowest mean QOL score at 61.4 (SD=24.9) while the psychological wellbeing domain had the highest QOL mean score at 76.6 (SD=15.4). The mean score in the environment domain was 62.2(SD=17.8). The factors that were found to be associated with QOL of caregivers were age (β=-0.26; 95%CI: -0.26 to -0.10), single marital status (β=-6.32; 95%CI: -9.50 to -3.14), very high caregiver satisfaction with health (β=11.87; 95%CI: 7.01 to 16.65),and very high socioeconomic status (β=17.82; 95%CI: 13.38 to 22.27). Similar results were obtained when we analysed using the individual constructs of QOL as the dependent variables. Conclusion: The caregivers reported a low QOL thus there is a need for development of interventions for caregivers to support them in their role. This study informs the health sector administrators to create policies in regard to caregivers of children with SCD. The increased support will improve QOL of caregivers which improves efficiency in performing their role and thus leads to better patient outcomes.