Author: Amelia Edwards
Edwards, Amelia, 2015 How Parents of Children with Autism Spectrum Disorder Make Decisions About Which Intervention Approaches to Access., Flinders University, School of Health Sciences
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Autism spectrum disorder (ASD) is a neuro-developmental disorder for which there is no known cure. There is however evidence that intensive early intervention can improve outcomes for children with ASD and their families. There is a vast range of interventions available for ASD, with varying degrees of empirical evidence. For a number of reasons, it is not possible for professionals to make specific recommendations about which intervention approaches families of children with ASD should access. Thus, the responsibility for selecting and accessing interventions lies primarily with parents of children with ASD.
Overall, there is a limited understanding regarding how parents of children with ASD make decisions about which intervention approaches to access, specifically with regard to how decision-making changes over time. The aim of the current study was to explore how parents make decisions regarding which intervention approaches to access for their children with ASD, parents’ perceptions of the current supports available for decision-making and how current practices could be improved to support parents making decisions.
A constructivist grounded theory methodology was employed to allow an in-depth exploration of parental decision-making to occur. Data collection was undertaken in two stages. In the first stage, three parents of children with ASD generated questions to be compiled into an interview guide for the subsequent stage of the study. Within the larger second stage, semi-structured interviews were undertaken with 14 parents of children with ASD. As per the conventions of constructivist grounded theory, data collection and analysis occurred concurrently, with open coding being applied to initial interview transcripts, which informed the direction of subsequent interviews. Constant comparison between the data allowed focused coding and the development of categories to occur. The use of memos allowed comparison between categories to occur and a grounded theory explaining parental decision-making over time to be constructed.
The findings of this study indicated that parental decision-making changes over time, as parents transformed from ‘parent’ to ‘expert’. Six categories of factors were identified as influencing parental decision-making (experience, understanding, needs, information, motivation and logistics). With regards to support for decision-making, parents identified the need for professionals to provide information, guidance and support for decision-making, and a model of collaborative decision-making was established as the ideal model of support from a parent perspective.
The theoretical framework proposed by Giddens (1991) of ‘fateful moments’ was applied to explain to the process of transformation from ‘parent’ to ‘expert’. Using this framework, a model explaining the transformation of parental decision-making over time was constructed. The findings of this research have implications for future research regarding parental decision-making, with some factors that had not been identified in previous research being identified in this study. Furthermore, the findings indicated that parents of children with ASD require ongoing support for decision-making post-diagnosis, though their support needs may reduce with time. In conclusion, the findings of this study provided a greater understanding of parental decision-making and the supports required by parents, both of which have implications for the delivery of services to families of children with ASD.
Keywords: autism spectrum disorder, decision-making, intervention, parents, therapists
Subject: Health Sciences thesis
Thesis type: Doctor of Philosophy
Completed: 2015
School: School of Health Sciences
Supervisor: Chris Brebner