A Qualitative Methods Study of How Parents of Children with Autism Find and Use Information about Interventions

Background: Parents of children with autism are influential decision-makers regarding treatment, participating in decisions both within traditional clinical settings (eg, through shared decision-making) and independently in non-clinical settings (eg, choosing complementary and alternative therapies). They are also much more likely to have intense information needs compared to most health consumers. Greater understanding of how parents encounter health information and use it for treatment decision-making could lead to better informational support and inform knowledge translation strategies that improve parents’ use of best research evidence. 

Objectives: The aim of this study is to develop a substantive theory explaining how Ontario parents of children with autism experience and use information that informs their decision-making and attitudes regarding interventions for their child.

Methods: A grounded theory methodology was adopted to develop the theory inductively from data consisting primarily of audio-recorded and transcribed semi-structured interviews, as well as web sites and other documents. Interview participants include English-speaking mothers of recently diagnosed children identified through both clinical and community channels, living in both urban and rural areas of Ontario; and a small number of parent support professionals. Per grounded theory methods, data collection proceeds concurrently with analysis throughout the study, with successive data sources (participants, documents, interview questions) selected to meet the evolving analytic needs. Analysis relies on the constant comparative method to develop categories, and uses extensive memos and diagrams to reach higher levels of abstraction. Data management and analysis are being facilitated by QSR’s NVivo software.

Results: At the time of writing, three parents had been interviewed about their experiences, opinions, and attitudes regarding treatment-related information; preliminary observations are noted. Parents described numerous interventions and services for which they had used information to support a positive/negative decision or to gain access to the intervention. Sources of information varied, and included clinician-provided information, books, web sites, PubMed abstracts and linked journal articles, online parent list-serves, workshops, etc. Some participants observed an apparent variability in the amount of time and energy that they and other parents choose to spend actively searching for information, particularly on complementary or alternative forms of treatment. Even when spending less amounts of time than other parents could be rationalized, guilt for not doing enough for their child was a reality. 

Conclusions: The grounded theory study, currently in its early stages, has broad implications for improving use of research evidence by parents of children with autism. One plan to extend the study’s utility after completion involves using conjoint analysis to model the information preferences of discrete segments of parents in order to be able better customize support services and information formats to cater to such populations. Hypotheses about barriers to finding and making optimal use of the best research evidence may be useful to suggest areas for further research or intervention development. Findings may also be used to provide clinicians more insight and sensitivity towards the informational challenges faced by parents. Better delivery of evidence-based information has potential to improve child outcomes, empower parents, and reduce misapplication of family resources.