Hope in parents of a child with autism spectrum disorder

Abstract

As the number of children diagnosed with autism spectrum disorder (ASD) in South Africa increases annually, so too does the number of parents raising these children. The issue addressed by this study is the gap in current literature on the hope experiences in parents of a child with ASD in South Africa. While numerous research studies have dealt with the experiences of parents raising a child with ASD, majority - specifically in Africa - focus on the negative experiences. Very few studies have been conducted on hope experiences and ASD, and these are almost exclusively within an international context. The purpose of this exploratory qualitative case study was to explore and describe the hope experiences of parents raising a child with ASD. The conveniently selected participants (two females) each had a child who was attending The Autism School1, an intervention centre in Johannesburg. An interpretive phenomenological approach allowed the researcher to understand the unique, subjective meaning that parents assign to their own experiences. Data were collected using a semi-structured interview and a participant research journal for each participant. Parents raising a child with ASD experience a variety of hope related experiences that either enhance or diminish hope. Health professionals either reduced hope by giving information at the time of the diagnosis that was not specific enough, or enhanced hope by interacting with the parents in a way that enhanced learning. Hope was also enhanced when parents felt connected with sources of support. Generating options to address the challenges experienced enhanced survival related hope whereas feelings of powerlessness over certain situations resulted in reduced hope. Being able to regulate emotions was important in enhancing survival related hope. Spiritual related hope was enhanced when in conjunction with the practical interventions the parents pursued, they were able to rely on a higher power to bring about change in the child through hoping for a miracle. These findings may be useful for health professionals working with these parents as it may provide a new way of understanding and supporting them.