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

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. 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. 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. 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. Caregivers in South Africa with children diagnosed with cerebral palsy (CP) report experiences of care that reflect biomedical and child-focused healthcare practices.The fragmented use of the biopsychosocial model not only limits the understanding of the impact of CP on the caregiver but may actively undermine caregiver engagement.Counselling and therapy should be provided to caregivers of children with CP who often have psychosocial needs that they are unaware of, particularly in the early stages of the CP diagnosis. Caregivers in South Africa with children diagnosed with cerebral palsy (CP) report experiences of care that reflect biomedical and child-focused healthcare practices. The fragmented use of the biopsychosocial model not only limits the understanding of the impact of CP on the caregiver but may actively undermine caregiver engagement. Counselling and therapy should be provided to caregivers of children with CP who often have psychosocial needs that they are unaware of, particularly in the early stages of the CP diagnosis.