“How do social networks contribute to decisions about the use of EBPs for the treatment of Autism Spectrum Disorders?”
To answer this question, the sent a survey out to the members of the Interactive Autism Network (IAN), an online community of 43,000 families created to connect parents of children with ASD to research. They recruited 244 parents of a child with ASD. The children were about 6 years old, but ranged between 2 and 17 years of age. The parents provided demographic information and ASD symptom severity of their children. Parents then made a list of all of the people they had received advice from about their child’s care, their profession and personal role in the child’s like, listed what that advice was, and whether they followed through on it. Parents then saw a list of 54 services commonly provided among treatment programs for autism. Of these, 24 were EBPs, 24 were non-EBPs, and 6 were supplemental services. They were asked to “mark which ones you’ve heard of, and which ones you’ve used in the past 6 months.”
The research team then combed through the parent reports of their social networks to mark which members of the parents’ network were “formal ties” vs “informal ties.” Formal ties were teachers, therapists, & other intervention providers. They hypothesized that formal ties would lead to greater use of EBPs because professionals are part of scientifically integrated professional organizations, thus increasing the chances of their patients hearing about new, effective treatments. In contrast, informal ties tend to have more limited social ties, and mostly share information amongst themselves, thus decreasing the likelihood that new information will infiltrate the network.
They found that parents of children with ASD in this sample were using between 1 and 35 types of services, with an average of about 6. Parents of children with ASD also reported seeking advice from an average of 6 people in the past 6 months. The good news was that 94% of the sample were using at least one EBP, but 58% of the sample were also using at least one non-EBP. This means that more than half of the sample was spending time and money on services for their children despite there being little evidence that it would help. What’s a bit more concerning was that only 58% of parents reported that their primary intervention for their child was an EBP... The rest of the article explained how a parent’s social network determined use of EBPs to help their child.
They found that about 15% of the use of EBPs was explained by social network size and composition. Further, social network variables predict parental EBP use above income, education, and severity of the ASD symptoms in their child. Having a larger social network, or wider net cast for advice, predicted a higher likelihood of using EBPs. They also found that people reporting more formal ties in their network were more likely to use EBPs as their primary source of intervention and had more hours of EBP intervention.
The EBPs were, not surprising, being recommended by professionals such as teachers, speech-language pathologists, social workers, respite care providers, psychologists, neurologists, early intervention providers, counselors, case managers, and behavioral specialists. Non-EBPs were being recommended by parents of children with autism, the internet, friends, family, colleagues, tutors, and physical therapists. Important to keep in mind here is that not all professionals give good advice, and not all other parents with ASD will recommend non-EBPs. What is important to note is the theory behind why larger networks lead to use of more effective treatments: professionals have contact with larger groups of other professionals so new information about treatments that are effective can reach their patients.
The truth is that parents of children with ASD need more help that they are getting. The most common source of advice these parents reported was family members, then teachers, then other parents. They are reaching out to the people nearby because it’s expensive and time-consuming to seek professional advice, and difficult to change your social network. Or at least it used to be. Which leads me to the title of this article, “There’s an app for that?”
Recently, a company called Maven decided to revolutionize health care access. The first thing you see on their website is, “You have ten places to be, and a waiting room isn’t one of them.” They realized that when you have a child, there are a million questions that come up regarding how to manage health-related issues for your child. So, they created an app that allows you to choose from a list of healthcare professionals including a pediatrician, nurse practitioner, nutritionist, lactation consultant, OB/GYN, a doula, psychologists, and social workers. Then you can choose an appointment time that works for you, even later that day. Then you can have a video appointment with them for consultation on your issue, from the privacy of your own phone, wherever that may be. There is flat fee per appointment that’s comparable to a common co-pay with no need for hassles with health insurance. For example, it’s $18 for a 10 minute conversation with a nurse practitioner. Easy, convenient, and inexpensive. With services like Maven, parents can easily double check the latest fads with a professional, before spending time and money on something that won’t help.
If you want to sign up, and why wouldn’t you, use the promo code SCIENCE to get $10 off your first visit, and get help that will actually help.
Before you go, one limitation of this study is that participants in this study were all part of the IAN, which is for families who are interested in contributing to and accessing the most recent innovations in treatments and resources for ASD. Therefore, this sample is likely an over-estimating use of EBPs in the community. Related to that point, the sample was also 90% white with 80% male children with ASD. ASD is twice as common in males as females, but a sample with more diversity would certainly help us understand how social networks influence decisions about health care in more communities.
Pickard, K. E., & Ingersoll, B. R. (2014). From Research Settings to Parents The Role of Parent Social Networks in the Choices Parents Make About Services for Their Child With Autism Spectrum Disorder. Clinical Psychological Science, 3(2), 256-269. doi: 10.1177/2167702614534240