The black hole of dealing with a disability diagnosis: Views of South African rural parents

Abstract

Background: Lack of support systems in the management of health and rehabilitation related problems, including the stigma of giving birth to a child with disability, results in some parents ignoring the doctor’s prognosis of lifelong disability.

Objectives: The study was conducted in the Eastern Cape province (ECP) of South Africa (SA) on parents’ views in caring for children with disability in an area with minimal health facilities in a rural setting.

Method: Data was collected using exploratory descriptive qualitative methods. A Xhosa-speaking researcher facilitated six focus group discussions and conducted one individual in-depth interview with 37 parents or caregivers of children with disability residing at Happy home. Only one father was interviewed. Thematic analysis was used in interpreting data obtained from interviews.

Results: The findings revealed themes indicating key concerns of parents, which were as follows: challenges with disability diagnosis, negative attitudes of health professionals, health and rehabilitation related problems, and lack of support from families and community.

Conclusion: Caring for children with disability in a rural setting where services are minimal or not available to the poorest people who mostly need such services is not easy. Thus, to respond appropriately to the health and support needs of children with disability, it is crucial to understand the social context and needs of their families and caregivers. Due to size of the study, findings cannot be generalised. Recommendations are made for further studies to explore the vital issues affecting parents of children with disabilities.