The experience of caring for a child with cerebral palsy in Tonga, Mpumalanga : caregivers' stories.

Barratt, Joanne Frances
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Cerebral palsy is a condition primarily defined by damage to the developing brain primarily resulting in a physical impairment, although the affected individual may present with concomitant impairments. The number of children presenting with cerebral palsy appears to be increasing, and while the medical effects of this disability have been well documented in the literature, a paucity of knowledge exists on the parental experience of caring for a child with cerebral palsy, particularly in rural South Africa. This dissertation will report on a study conducted in Tonga, a rural area of South Africa, which assessed caregivers’ experiences of caring for a child with cerebral palsy. Qualitative methods, including participant observation and narrative interviews were used and the SiSwati narratives of 27 participants were transcribed and analysed using theoretical coding. A number of recurrent themes emerged including the impact of gender on caregiving, the influence of traditional beliefs and practices and the experience of western medicine. However, the pervasive nature of poverty served to influence all aspects of caring for a child with cerebral palsy. These themes are discussed in relation to current healthcare policies, the influence of the HIV/AIDS pandemic, the concept of ‘ubuntu’ and socio-political aspects of healthcare. The findings highlight the value of using cultural narratives and participant observation as a means of exposing aspects related to the experience of disability that cannot be portrayed using quantitative methods. It emphasizes the nature of disempowerment amongst marginalized communities and draws attention to the need for both multisectoral and community involvement to bring about transformation.
Cerebral palsy, Socio-political, Marginalize, Qualitative, Cultural narratives, Participant observation