Development and validation of a support model for families of children with autism spectrum disorders in Gauteng and Limpopo Province of South Africa

Abstract

Families with ASD children who have little support from a partner, friends, community and health care professionals report increased depression and lower life satisfaction compared to families with a good deal of social support. Social support may be a resource to boost an individual’s ability to overcome the negative consequences of stressors related to parenting a child with ASD.The study explored and described the experiences of families and teachers regarding support of families with ASD children, then developed and validated a social support model for families of children with ASD in the Gauteng and Limpopo provinces of South Africa.The method was qualitative, explorative, descriptive, contextual design employing a phenomenological approach and theory-generating study. Individual semi-structured and focus group interviews were audiotaped and transcribed verbatim. Eight steps of Tesch’s inductive, descriptive open coding technique by Creswell were used followed by independent coding. Purposive sampling recruited 37 participants from the selected special schools of Gauteng and Limpopo Provinces. Trustworthiness criteria adhered to were credibility, dependability, transferability, and confirmability. Ethical clearance was sought from the University of Limpopo. The findings showed that there is a lack of social support for families with ASD children. These include difficulties in managing children’s patterns of behaviour and communication skills, severe stress related to having a child with ASD, knowledge deficiencies associated with ASD, the burden of caring, financial constraints, lack of material and human resources within the special schools, overcrowding of ASD learners, lack of a formal curriculum, lack of schools for autistic children in the Limpopo Province, poor infrastructure, and poor school management support.The study addressed the complex needs of ASD children and recommended that families should be assisted to build their capacity to care for, and protect their ASD children. A social support model was developed to serve as a reference framework for professional nurses in different spheres of health care and education, to promote a supportive environment for families with ASD children