The health-seeking experiences of caregivers of children with cerebral palsy in Thembisa, South Africa: shifting from the voice of medicine to the voice of the caregiver.

Abstract

Purpose: Caregivers of children diagnosed with cerebral palsy (CP) frequently engage with healthcare professionals (HCPs) when seeking help on behalf of their children. However, little is known about their health-seeking experiences, particularly in low-resourced townships.

Materials and methods: A qualitative descriptive case study research design, underpinned by a phenomenological approach. A series of semi-structured interviews were conducted with fifteen caregivers who live in a township in South Africa and were selected using purposive and snowball sampling. Data were analysed using interpretative phenomenological analysis.

Results: The results revealed three main themes which include: (i) A primary focus in healthcare systems on child-centred care which neglects the needs of caregivers, (ii) Brief disease-focused consultations with HCPs that have a negative impact on caregiver health-seeking experiences, and (iii) Dismissal of caregivers' expert knowledge.

Conclusion: The findings indicate that caregivers have needs that are separate from those of their children. To ensure that caregivers receive helpful help during their health-seeking attempts, there must be a shift from the traditional paternalistic roles of healthcare providers. Instead, HCPs should view themselves as collaborators with caregivers to ensure that they provide family-centred services. Additionally, the voice of the lifeworld needs to become a central feature of the care provided to caregivers and their children.