The experiences of family caregivers of children living with Autism Spectrum Disorder.

Abstract

A limited number of studies have explored and documented the daily challenges faced by the caregivers of children with autism spectrum disorder in Durban, KwaZulu-Natal,South Africa. The literature on the challenges of raising a child with autism spectrum disorder is mostly reported in northern American and European countries (Boyd, 2002). South Africa has little awareness of the ramifications associated with raising a child with this neuro-developmental disorder, irrespective of it being recognized as highly prevalent in South Africa (Stephens, 2012). The aim of this study was to document what family caregivers face in raising a child with autism spectrum disorder in Durban,South Africa. A qualitative approach was adopted by the researcher in order to gain insight into the experiences of family caregivers of children with autism spectrum disorder. Interviews were conducted with seven biological mothers (and according to race: five black, one white and one coloured) of children with autism spectrum disorder. Interviews were grouped using thematic analysis and the themes which were discovery included:(1)perceived daily challenging behaviour, (2) discipline and its effect on caregiving, (3) life style changes, (4) financial burden, (5) communication difficulties and caregiving, (6) emotional burden, and (7) support system. The results have suggested that family caregivers of children with autism spectrum disorder experience different degrees of stress,which stem either from difficulties in finding schools or not understanding what their child needs.They,however, showed some levels of optimism about their circumstances. The findings also emphasized on where family caregivers themselves believe they need additional support.Some family caregivers raised key coping strategies they found helpful in dealing with daily challenges.