Caregiving as an occupation: the experiences of primary caregivers of young children with Cerebral Palsy in Mangaung

Abstract

Introduction: Cerebral Palsy (CP) is a permanent yet non-progressive disorder characterised by motor impairments and functional limitations. Children who are severely affected are dependent on the assistance of caregivers for daily tasks and activities such as feeding, toileting, dressing and even moving around. Despite alarmingly high prevalence rates of CP in South Africa (SA), a paucity of literature exists in relation to the experiences of those caring for these children in South African contexts. Purpose: The aim of this study was to explore and describe the occupational experiences of the primary caregivers (PCGs) of young children with CP in Mangaung in order to inform current and future practices for occupational therapists providing rehabilitative services to this population. Methodology: A qualitative study, embedded within constructivism was conducted to gain a better understanding of the occupational experiences of the PCGs of children with CP. Purposive sampling was used to select ten PCGs of young children with severe CP residing in Mangaung in the Free State province of SA. Data was captured through a socio-demographic form and Photovoice, a visual data gathering technique. Participants’ reflections on their own photographs, facilitated by the researcher in individual reflection sessions provided the primary source of data analysed in this study. Reflections were transcribed and analysed according to an inductive content analysis. Data was coded by the researcher and two co coders before clustering codes into categories and themes. Findings: Four themes were generated through analysis of the data, namely Caregiving in the local environment, A disabled child is still a child, I am a caregiver and Shared occupation. The first theme presented experiences of community attitudes such as acceptance or ignorance towards the disabled child alongside the value of certain resources and social support in the caregiving occupation. The second theme emphasised the child’s humanness by considering the child’s cognisance and other capacities. The third theme described participants’ experiences of their occupational identity as PCGs in relation to the responsibility they have towards the child, insights and understandings they have gained through caregiving and coping strategies employed. The final theme presents caregiving as a shared occupation where challenges related to the child or the environment are overcome, strengthening the unique connection between child and PCG. Conclusions: This study confirms the need for caregiver-professional collaboration in designing caregiver- and child-specific interventions for children with CP and their PCGs. The findings highlight a substantial need amongst PCGs for acceptance of their child by the community. Findings allowed the researcher to make recommendations for occupational therapists working with children with CP and their PCGs, which include caregiver-directed interventions, caregiver-specific education and training interventions, support groups and mobility devices and equipment. Recommendations are made for future research, before discussing the limitations and the value of this study.