Shared decision making: improving care for children with autism.
When primary-care teams actively involve parents in shared decisions, parents feel better about care and report getting clearer guidance on autism treatments.
01Research in Context
What this study did
Golnik et al. (2012) asked parents of children with autism about shared decision making. They used a survey to see if parents felt part of the care team.
The study looked at whether higher shared decision making linked to more satisfaction and clearer guidance on treatments.
What they found
Parents who reported more shared decision making also reported higher satisfaction. They said they got better guidance on autism treatments and tricky topics.
The results were positive, showing that teamwork in the exam room pays off.
How this fits with other research
Golnik et al. (2012) found the same thing in a quasi-experimental test. Their autism-specific medical home tripled the odds of coordinated care and also lifted shared decision making and satisfaction.
LeBlanc et al. (2003) is an earlier survey that set the stage. It showed parents liked clinicians who listened, gave written info, and answered questions. The 2012 study widens that lens from one talk to ongoing shared choices.
Ho et al. (2014) extends the idea to Hong Kong. Their qualitative work shows parents still hit barriers, so good shared decision making is not yet routine worldwide.
Why it matters
You can boost parent satisfaction today. Ask open questions, share written handouts, and invite parents to help pick goals. These small moves match the medical home model and cost nothing.
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02At a glance
03Original abstract
We assessed the extent to which parents of children with autism spectrum disorder report that they are engaged in shared decision making. We measured the association between shared decision making and (a) satisfaction with care, (b) perceived guidance regarding controversial issues in autism spectrum disorder, and (c) perceived assistance navigating the multitude of treatment options. Surveys assessing primary medical care and decision-making processes were developed on the basis of the U.S. Department of Health and Human Service's Consumer Assessment of Healthcare Providers and Systems survey. In May 2009, after pilot testing, we sent surveys to 203 parents of children from ages 3 to 18 with International Classification of Diseases-9 and parent-confirmed autism spectrum disorder diagnoses. The response rate was 64%. Controlling for key demographic variables, parents of children with autism spectrum disorder reporting higher levels of shared decision making reported significantly greater satisfaction with the overall quality of their child's health care (p ≤ .0001). Parents reporting higher levels of shared decision making were also significantly more likely to report receiving guidance on the many treatment options (p = .0002) and controversial issues related to autism spectrum disorder (p = .0322). In this study, shared decision making was associated with higher parent satisfaction and improved guidance regarding treatments and controversial issues within primary care for children with autism spectrum disorder.
Intellectual and developmental disabilities, 2012 · doi:10.1352/1934-9556-50.4.322