2-year-old Addison Hyatt survived a pediatric stroke at birth. (Image courtesy: Kaysee Hyatt)
One Google search can sometimes change everything.
After learning something new about our child’s health or condition, especially for worried parents and caregivers, leveraging online search as a resource in diagnosis, clarification and education is typical behavior. Searching out support, camaraderie and tips online just makes sense. In fact, 2013 data from the Pew Research Center finds that 1 in 3 Americans goes online to search for information and support in finding a diagnosis. If you’re a woman, college-educated, or younger (under age 49) the likelihood of searching online increases and approaches 50%. Not only are we searching for health info and connection online, we’re doing it more so with mobile devices. Pew data from April 2015 finds that 64% of Americans have a smartphone and that 6 in 10 are searching for health info on a mobile device.
That smartphone in your pocket can connect you to information yes, but also to others like you.
Of course most clinical care still happens in the office and most decisions, especially important ones, are made offline. Yet preparing for visits, strengthening resolve, finding other parents in similar situations can potentially improve the way we care for and raise children with underlying medical challenges. It can also change how we feel about it. In my mind, one of the most precious resources will always be the people. This includes our family, our nurses, our therapists, our relatives, our clinicians and our peers. In the words of Susannah Fox, a technology and health researcher who is now Chief Technology Officer at the U.S. Department of Health and Human Services, when it comes to caring for yourself or others in your life, “Community is your superpower.”
I’m still the doctor who encourages online search, especially when looking for resources in networked communities. Social networks have simply shrunk the distance between us and facilitated robust connection. Finding others like you, who’ve been down the road before you, can often provide support, help reduce anxiety, provide tips and connect you with resources you didn’t even know existed. As a pediatrician, there’s no question that expert patients and their families often teach me about resources available to them I’ve not previously known — as a clinician I’m grateful. Once I review the sites and organizations, I can then share those communities and education sites with other patients I’m lucky enough to partner with.
Community is your superpower ~Susannah Fox
Mom Kaysee Hyatt drives this point home. After months of concern surrounding her infant daughter’s delayed development, Kaysee Hyatt finally got the diagnosis: her daughter Addison had suffered a perinatal ischemic stroke at birth. After receiving the news, Kaysee was told to go start therapy but in her words “there really was no plan.” Out of curiosity and intent, she turned to the Internet. A Google search on pediatric stroke led her to CHASA.org (Children’s Hemiplegia and Stroke Association), a nonprofit group founded by parents that provides resources and dozens of discussion groups for families dealing with pediatric stroke. Kaysee told me that when she found the site and learned more, “It changed everything.” When talking with Kaysee what stuck with me most is how Kaysee’s sense of isolation dissolved when she found these resources online. She remembers that she was stunned to find so many families with strikingly similar stories to her own. “It was amazing,” she told me, “we all shared the same stories.”
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