Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders

Grant, N., Rodger, S. and Hoffmann, T. (2016) Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders. Child: Care, Health and Development, 42 1: 125-134. doi:10.1111/cch.12296


Author Grant, N.
Rodger, S.
Hoffmann, T.
Title Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders
Journal name Child: Care, Health and Development   Check publisher's open access policy
ISSN 1365-2214
0305-1862
Publication date 2016-01-01
Year available 2015
Sub-type Article (original research)
DOI 10.1111/cch.12296
Open Access Status Not Open Access
Volume 42
Issue 1
Start page 125
End page 134
Total pages 10
Place of publication Chichester, West Sussex, United Kingdom
Publisher Wiley-Blackwell Publishing
Collection year 2016
Language eng
Formatted abstract
Background When a child is diagnosed with autism, parents are faced with the task of choosing from many different intervention options. To find information about the options available, parents turn to a number of different sources. This study explores parents' (n = 23) intervention decision-making processes and information preferences following the diagnosis of ASD for their child.
Methods Qualitative thematic analysis of verbatim transcripts from interviews and focus groups involving parents of children with an autism diagnosis was undertaken.
Results Analysis of the results revealed that there are concurrent emotional and pragmatic intervention ‘journeys’ undertaken by parents post diagnosis, which encompass the primary themes of: (1) information sources used, (2) parents' information preferences and (3) factors influencing intervention decision making. Parents described a journey from the point of diagnosis that involved seeking information on ASD interventions from multiple sources, with the Internet being the primary source. They were overwhelmed by the sheer volume of information available, and their preferences for information varied according to their stage in the journey post diagnosis. Parents had a ‘trial and error’ approach to choosing ASD interventions, with confidence increasing as they became more familiar with their child's condition, and had opportunities to explore numerous information sources about their child's diagnosis. While confidence increased over time, consideration of the effectiveness or evidence supporting interventions remained largely absent throughout the journey.
Conclusion This study highlights the need for parents of children with ASD to be supported to make informed intervention decisions, particularly with consideration for research evidence.
Keyword Autism Spectrum Disorder
Information preferences
Intervention decision making
Interventions
Parents
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ
Additional Notes Published online 22 October 2015

Document type: Journal Article
Sub-type: Article (original research)
Collections: Official 2016 Collection
School of Health and Rehabilitation Sciences Publications
 
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