Family Perspectives–Weight and Obesity, ASD, Hospitalization, ReferralsShared Decision Making and Treatment Decisions for Young Children With Autism Spectrum Disorder
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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2022, The LancetCitation Excerpt :Multiple providers participating in the same assessment require time to maximise team efficiency and maintain a clear internal communication with the family or individual, and often also result in families and autistic individuals having to provide the same information repeatedly. On the other hand, some single providers might not have the skills necessary to observe, measure, and discuss with families the range of issues affecting individual children or adults.166,167 Kanne and Bishop162 highlight that, despite a waitlist crisis for evaluations at particular centres in many countries and communities, shortcuts to speed up the diagnostic process (eg, remote video capture or biological tests) do not actually address the problem.
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2022, Psychology of Learning and Motivation - Advances in Research and TheoryCitation Excerpt :Contextual factors that affect linguistic communication, such as how familiar conversational partners are with one other, have also been shown to directly affect health-related decision-making. For example, primary care providers, with whom patients have an established relationship, have been more successful than other medical professionals at helping combat vaccine hesitancy during the covid-19 pandemic (Ratzan, Schneider, Hatch, & Cacchione, 2021), and improving communication in pediatric settings is critical in helping caregivers of children with autism spectrum disorder navigate treatment options (Evans, 2021; Levy et al., 2016). These examples underscore the importance of linguistic communication skills that allow people of all ages to flexibly adapt (or accommodate) to a wide range of conversational contexts, in familiar and unfamiliar settings, and involving both familiar and unfamiliar conversational partners of similar or different ages (Giles et al., 1991).
The authors declare that they have no conflict of interest.