Experiences of caregivers for children diagnosed with autism spectrum disorder in the Ehlanzeni District, Mpumalanga Province

Abstract

Autism spectrum disorder (ASD) is a life-long neurodevelopmental disorder, which does not affect the child only but the caregiver more. ASD characterized by impairments in social interactions, communication and repetitive behaviour. Therefore, caring for a child diagnosed with ASD can be a very challenging experience for caregiver especially when knowledge about the condition is limited. The aim of the study was to explore experiences of caregivers for children diagnosed with ASD in the Ehlanzeni District, Mpumalanga Province. The study adopted a qualitative approach, wherein data was collected using face-to-face semi-structured interviews, in which an interview guide was used. Participants were selected purposively from the three different schools and data was analysed using thematic content analysis. Twelve (12) participants were interviewed for the study. The caregivers’ children were aged 5-12 years. Ethical considerations and measures to ensure trustworthiness were adhered to throughout the study. The study findings indicated that caregivers for children diagnosed with ASD experienced psychological stress, social isolation and stigma, financial burden, lack of family support, services for children with ASD were perceived not to be accessible and available. The findings also indicated that there is limited knowledge of ASD amongst caregivers, health professionals and the community at large. Therefore, more awareness campaigns need to be done on ASD to increase knowledge on the condition. Furthermore, the study recommends that support groups for caregivers of children diagnosed with ASD should be formed and that information regarding a range of inexpensive interventions and educational programs should be made available for caregivers and their children, as well as continuous dissemination of information amongst caregivers. However, limited statistical information on ASD is available on the South African context.