Quality of life of primary caregivers of children living with cerebral palsy at two clinics in Blantyre, Malawi.

Abstract

Introduction: In Malawi, Primary Caregivers (PCGs) of children living with Cerebral Palsy report challenges such as physical strain and lack of resources that affect care giving. Although such experiences affect the PCGs' Quality of Life (QoL), there is paucity of data for Malawi. Understanding their QoL would inform establishment of holistic intervention(s) tailored to meet their needs. Therefore, the purposes of this study were to determine QoL of PCGs of the children who were receiving rehabilitation at Queen Elizabeth Central Hospital (QECH) and Feed the Children (FtC), to identify PCG's and children's socio-demographic factors that may attribute to the perceived QoL, and to compare the PCGs' QoL between the sites.

Methods: A cross-sectional study was conducted from January to April 2019 on 142 PCGs of children aged between 2 and 18 years of age. All PCGs who were employed for the child-care, or had a chronic sickness were excluded. QoL was assessed using the World Health Organization Brief questionnaire, with a cut-off point of <60% for poor QoL. The severity of children's impairments was assessed using Gross Motor Function Classification System. Descriptive and inferential statistics were conducted to analyze the data. The PCGs' age, sex, marital status and level of education, and child's severity of impairment were compared with QoL.

Results: The majority of PCGs (61.30%) had poor QoL, and there was no significant difference in overall QoL of the PCGs between the sites (p<0.31). The PCGs at QECH had significantly higher physical domain mean scores than at FtC (U=1906, p<0.01). The overall QoL differed significantly across the marital statuses of the PCGs (p<0.03).

Conclusion: The study has established that most PCGs at both sites possess poor QoL. However, there is need to investigate how the rehabilitation institutions and workers influence the QoL of the PCGs within and between the facilities.