ABSTRACT

Background: The prognosis of lifelong disability given by doctors is sometimes ignored by the child’s parents. Reasons for this may include the stigma of having a child  with disability as well as the lack of support systems to manage the medical and rehabilitation related issues.

Objectives: The views of parents’ caring for children with a disability was explored in a rural area in the Eastern Cape province. This area had minimal healthcare facilities.

Method: Exploratory descriptive qualitative methods were employed to collect data. Six focus group discussions and one individual in - depth interview were conducted by a Xhosa speaking researcher. The participants were 37 caregivers or parents of children with disability that stayed at Happy home. Of the participants only one was a father. In order to  interpret data from interviews , thematic analysis was utilized.

Results: Key concerns of parents were evident in the following themes that emerged from the study; difficulty with the diagnosis of disability, health professionals negative attitudes, problems related to health and rehabilitation and lack of family and community support.

Conclusion: It is not easy to care for children with disability in a rural area where services are needed but are minimal and unavailable to the poorest people who need these services the most. The needs of these families and caregivers as well as the social context needs to be understood so that the health and needs of children with disability can be appropriately addressed. Results of this study cannot be generalized due to its size. Further studies that explore the issues affecting parents of children with disability are recommended.

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