Caregivers' burden of caring for children with cerebral palsy in Lagos, Nigeria

Abstract

Introduction Cerebral Palsy is a disorder that affects the development of movement and posture causing limitation of activity and participation restriction. Due to the physical challenges faced by children with cerebral palsy, they depend on their caregivers (which include parents, grandparents) and other relatives of the family for their activities of daily living and care. Caring for a child with activity limitation increases the burden of care on the caregivers. Investigations on caregivers’ quality of life (QoL), socio-economic and psychosocial factors of caring for CP children had been done; however, there is a dearth of literature on the burden of care on caregivers of children with CP. Aim: This research sought to establish caregivers’ burden of caring for children with cerebral palsy in Lagos, Nigeria. Methods: A sequential mixed method design was used. This involved collecting quantitative data first, followed by qualitative data from the same population sample. A purposive sampling method was used to select the participants. The Zarit Burden Interview questionnaire was used to collect the quantitative data and focus group discussions were used to collect the qualitative data. The Zarit Burden Interview questionnaire was handed to 120 participants who are caregivers of children with cerebral palsy on the day of their appointment to the clinic. All participants were required to complete the questionnaire; thereafter the same participant joined the focus group discussion (FGD), for qualitative data collection. There were six (6) FGDs comprising often (10) participants in each group, adding to a total of sixty (60) participants. Data from the Zarit Burden Interview questionnaire were analysed using descriptive statistics and chi-square tests, whilst data from FGD were transcribed verbatim and analysed using open coding. Conclusion: The findings of the study show that caregivers of children with CP face challenges that make caring for their children burdensome. The study showed that the caregivers faced challenges in the following areas; accessibility to healthcare and education, mode of transporting their children, financial, and social support. It was recommended that policymakers and the government intervene by making policies and setting up structures that will help alleviate the burden of the caregivers. The introduction of community awareness programs and support groups was recommended.

Key terms: Burden of caring, Caregivers, Care giving, Cerebral Palsy, Children, Physiotherapy