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IMFAR: Shared Decision Making in Autism Is Challenging

Role of pediatrician, treatment choices, barriers to care, and stress identified as areas to address

THURSDAY, May 17 (HealthDay News) -- In order to facilitate shared decision making in autism spectrum disorder (ASD) treatment, primary care pediatricians (PCPs) need more training, and parents need to be guided in terms of realistic expectations regarding the role of the PCP, according to a study to be presented at the annual International Meeting for Autism Research, held from May 17 to 19 in Toronto.

Susan E. Levy, M.D., from the Children's Hospital in Philadelphia/University of Pennsylvania, and colleagues conducted semi-structured interviews with 20 PCPs (64 percent female) and 20 parents of children with ASD aged 3 to 5 years. A modified grounded theory approach was used to identify themes which influence shared decision making for ASD treatment.

The researchers identified four primary themes which influence shared decision making. The role of the PCP was unclear, with many parents not expecting their PCP to make treatment recommendations, and not considering consulting their PCP about treatment options. PCPs gave referrals for early intervention, but reported feeling inadequately trained to advise families about treatments (including complementary and alternative treatments) or referrals. Treatment choice was an area of conflict, particularly when parents broached the subject of complementary and alternative medicine. Delays in obtaining evaluations, costly treatments, and a lack of treatment providers were identified by both parents and clinicians as barriers to ASD treatment, with parents viewing PCPs as a resource to overcome these barriers. Families experienced caregiving-related stress and felt that their pediatricians were able to provide support.

"Many pediatricians do not view ASD treatment as within their scope of practice, and, even clinicians interested in managing ASD, lack training," the authors write.

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