A qualitative study to understand the experiences and coping processes of primary caregivers of children with Autism Spectrum Disorder.

Abstract

Aim: The aim of the study is to gain deeper understanding into the lived experiences of parents at a stimulation centre in KwaZulu-Natal, South Africa, and the coping strategies they employ in caring for their children with Autism Spectrum Disorder (ASD). Significance: As literature has focused on international studies this study has provided deeper understanding of the lived experiences and coping strategies of parents of children with ASD in a local setting within South Africa. Experiences across the age spectrum of children, gendered differences in coping and the meaning behind having a child with ASD provides a unique outlook on ASD as opposed to literature that focuses on other areas. Methods: Eleven parents participated in semi-structured interviews. These interviews were triad, dyad or one-on-one interviews. Interviews were audiotaped and transcribed verbatim once completed. Thematic analysis was used to analyze the data and extract themes. Findings: The lived experiences of parents included stressful and devastating experiences as well as positive meaning. Daily challenges were navigated by positive and negative coping strategies with gendered differences in coping being evident. Parents expressed mixed feelings about the benefits of support groups and provided a road map of advice for other parents of children with ASD. Conclusion: Parents of children with ASD undergo enormous stress and emotional upheaval in caring for their children. However in addition to negative experiences, they gain some positive meaning and see it as character building. Their experiences provide useful information for other parents undergoing the same journey.