Abstract
Background
The Canadian prevalence of Autism Spectrum Disorder (ASD) is one in 66 children affecting many families nationwide. Increasingly, clinicians are tasked with discussing new ASD diagnoses with families; however, many physicians are not comfortable with the conversation, despite self-reported familiarity with ASD. Concurrently, research indicates that families are often dissatisfied with their diagnostic journey, including the diagnostic conversation, which has been described as “profound to almost all parents” (Abbott et al., 2012). Given the importance of this moment, we applied a qualitative meta-synthesis design to gain a deeper understanding of the family experience. Meta-synthesis is an emerging field in health sciences, wherein a systematic search strategy is coupled with qualitative analysis. It is valuable for evidence-driven practices and policies as large volumes of qualitative literature are synthesized into actionable concepts.
Objectives
We aim to describe and appreciate the family experience of an ASD diagnostic conference. We define the diagnostic conference as is the meeting where children, parents, and/or families are told that the child has an ASD diagnosis.
Design/Methods
We conducted a systematic search to capture relevant qualitative studies, including all qualitative approaches and qualitative components of mixed-methods studies. A search strategy was developed by a medical librarian with systematic review expertise. An initial search of three databases was undertaken to identify keywords. These terms were then used in searching a wider array of pertinent databases. The search was not limited by dates. Applying Saini and Shlonsky’s (2012) meta-synthesis method, included studies’ demographic and contextual data will be extracted. “Findings/Results” sections of included articles will also be extracted and coded by two independent reviewers. Codes will be translated into themes by an interdisciplinary team of two to five reviewers applying an inductive and iterative process, with a critical disability theoretical lens. Themes will be integrated to form an overall synthesis of the family experience of the ASD diagnostic conference.
Results
In total, 1329 titles/abstracts were reviewed: 23 were selected for inclusion and 24 are pending team discussion. Preliminary analysis reflects shared concepts among included articles such as: provider-family rapport; conflict over who is the expert; comprehensiveness; language; body language; individuals present; physical space; elements of ASD emphasized (positive vs. negative); hope. Most studies were based in North America or Europe with Caucasian participants represented. Mothers were relatively over-represented as participants. In applying a critical disability theoretical lens, initial observations of the language of included studies present a negative framework for meaning making of an ASD diagnosis.
Conclusion
This meta-synthesis will provide an in-depth appreciation of the family experience of the ASD diagnostic conference and explore the context of published research. In doing so, it may inform individual clinician practices, medical education around communication, and family-centered-care policies.
Creating a Different Kind of Normal: Parent and Child Perspectives on Sibling Relationships When One Child in the Family Has Autism Spectrum Disorder