Shared Decision Making and Treatment Decisions for Young Children with Autism Spectrum Disorder.

TitleShared Decision Making and Treatment Decisions for Young Children with Autism Spectrum Disorder.
Publication TypeJournal Article
Year of Publication2016
AuthorsLevy SE, Frasso R, Colantonio S, Reed H, Stein G, Barg FK, Mandell DS, Fiks AG
JournalAcad Pediatr
Date Published2016 Apr 27
ISSN1876-2867
Abstract

OBJECTIVE: To describe influences on shared decision making (SDM) between primary care pediatricians and parents of young children with autism spectrum disorder (ASD).

METHODS: We conducted a qualitative study using key informant interviews with 20 pediatricians of varying experience from 10 primary care practices and 20 English speaking parents of young children (ages 2-5 years) with a parent reported diagnosis of ASD. Subjects were recruited through purposive sampling. Interviews were audio taped, transcribed verbatim and analyzed using an integrated approach to data analysis. Differences in coding were resolved by consensus. We achieved thematic saturation and ceased recruitment after 20 interviews were completed within each group.

RESULTS: Three primary themes emerged: 1) pediatricians and parents reported knowledge gaps by pediatricians about ASD treatments and community resources and ambiguity regarding the pediatrician's role in ASD care; 2) there was little communication between parents and pediatricians about treatment choices; 3) use of CAM treatments created conflict between pediatricians and parents and, as a result, parents may independently pursue treatments, without benefit of discussing safety and efficacy with pediatricians. Despite these barriers, parents desired increased support and guidance from their pediatricians, including for CAM.

CONCLUSIONS: Much work is needed to effectively foster SDM in the context of ASD treatment decisions in primary care, including pediatrician training in ASD to enhance knowledge about evidence-based and novel treatments, clinical practice guidelines and community resources.

DOI10.1016/j.acap.2016.04.007
Alternate JournalAcad Pediatr
PubMed ID27132050