"I will take my flip-flops, put them on and walk to church": Understanding quality of life of children with cerebral palsy in a rural setting

Abstract

Introduction: Cerebral Palsy (CP) is a chronic, debilitating condition affecting most spheres of a person's life. This study aimed to explore the perceived factors impacting the quality of life (QOL) of a selected group of children with CP living in the rural Umzinyathi district of KZN, South Africa.

 

Methodology: The study had a qualitative, phenomenological design with purposeful sampling to recruit children with CP and their parents. Ten individual interviews were conducted, two with children with CP and eight with parent-proxies. One focus group was also conducted with the parent-proxies. Thematic analysis was used to interpret the data.

 

Findings: Three themes emerged from the data: Physical wellbeing, Activity participation, and Family and community. These themes encompassed the lived experiences of the children with CP, as well as the perceived factors that impacted on their QOL. Each theme was further broken down into subthemes, with a total of fourteen subthemes. 

 

Conclusion: QOL in rural areas is a complex and multi-faceted construct. Understanding the factors that impacted the children's QOL, will enable occupational therapists to offer client-centred meaningful interventions. When aiming to improve the QOL of children with CP in rural areas, awareness campaigns, anti-stigma messages and support for caregivers are vital.

 

Keywords: quality of life, cerebral palsy, rural occupational therapy, client centred intervention, caregiver support