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

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.

Identiferoai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:wits/oai:wiredspace.wits.ac.za:10539/4946
Date10 June 2008
CreatorsBarratt, Joanne Frances
Source SetsSouth African National ETD Portal
LanguageEnglish
Detected LanguageEnglish
TypeThesis
Format9165525 bytes, application/pdf, application/pdf

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