Elsevier

Academic Pediatrics

Volume 16, Issue 6, August 2016, Pages 571-578
Academic Pediatrics

Family Perspectives–Weight and Obesity, ASD, Hospitalization, Referrals
Shared Decision Making and Treatment Decisions for Young Children With Autism Spectrum Disorder

https://doi.org/10.1016/j.acap.2016.04.007Get rights and content

Abstract

Objective

To describe influences on shared decision making 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 (aged 2–5 years) with a parent-reported diagnosis of ASD. Subjects were recruited through purposive sampling. Interviews were audiotaped, 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 as well as ambiguity regarding the pediatrician's role in ASD care; 2) there was little communication between parents and pediatricians about treatment choices; 3) use of complementary and alternative medical treatments created conflict between pediatricians and parents, and as a result, parents may independently pursue treatments, without the benefit of discussing safety and efficacy with pediatricians. Despite these barriers, parents desired increased support and guidance from their pediatricians, including for complementary and alternative medicine.

Conclusions

Much work is needed to effectively foster shared decision making 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.

Section snippets

Setting

We conducted this study in collaboration with the Children's Hospital of Philadelphia's (CHOP) Pediatric Research Consortium (PeRC) and families of children with ASD living in the greater Philadelphia area. The University of Pennsylvania and CHOP institutional review boards approved the study. All participants provided written (for in-person interviews) or verbal (for telephone interviews) informed consent. Although loopholes exist, the Omnibus Amendment to the insurance law (PL 885) in

Study Groups

Demographic characteristics of parent and pediatrician participants are summarized in Table 1. Forty percent of parents received care through the CHOP system (but not from pediatrician participants). Providers were experienced pediatricians (mean 19 years in practice) and were evenly divided among suburban and urban practices.

Themes

Three primary themes emerged: 1) pediatricians and parents report knowledge gaps by pediatricians about ASD treatments and community resources, and ambiguity regarding the

Discussion

We found that multiple and substantial barriers exist to implementation of SDM in primary care for young children with ASD. Barriers included a lack of knowledge by pediatricians about ASD treatments and a perception by both families and providers that treatment recommendations are outside the scope of practice for pediatricians, with a resulting lack of communication between parents and pediatricians about treatment choices. Addressing these barriers, which preclude SDM, might ultimately

Conclusion

This study identifies substantial barriers to SDM between pediatricians and parents of children with ASD. Both parents and pediatricians describe that pediatricians have knowledge gaps regarding treatments and community resources for children with ASD. This lack of knowledge limits effective discussion of treatment options and may lead families to use alternative treatments without pediatrician input. Our results suggest that to effectively foster SDM, knowledge barriers must be overcome.

Acknowledgments

We thank the network of primary care clinicians as well as their patients and families for their contribution to this project and clinical research facilitated through the PeRC at the Children's Hospital of Philadelphia.

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    The authors declare that they have no conflict of interest.

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