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.”
Kaysee learned how other families were searching for diagnosis, how they leveraged specialists and how they worked to get care covered by insurance. Kaysee talks about how she built a better medical team for her daughter thereafter. Kaysee isn’t shy about the power in this connection saying, “We would have been lost without that support. It was inspirational to know that even though there’s not a lot of information about pediatric stroke available, there are families who have gotten through it.” Kaysee told me she shares resources with physicians, therapists and others on her daughter’s medical team. Even more, she’s now actively paying this forward.
About a year after Addison’s diagnosis, Kaysee realized she wanted to help other families struggling with the same diagnosis gain easier access to medically-vetted resources and information. She started bringing therapy ideas from other hospitals around the country to Addison’s therapy appointments and encouraging her doctors to tell other parents about online resources available to them.
The first blow (diagnosis) is hard … and just knowing that there are other families, that there’s support, that there are resources, that’s huge. The first thing I tell parents is ‘You become your child’s best advocate.’
Kaysee soon realized she was becoming more comfortable with sharing her family’s story and knew that she wanted to encourage others to help each other through the diagnosis and recovery process. A few months ago she created the Pediatric Stroke Warriors Facebook page, a community designed to share medically-vetted information and connect families going through similar situations. Kaysee says the next step is establishing a nonprofit group to improve awareness and connect other families like hers in the PNW. She says her goal with Pediatric Stroke Warriors is to gain awareness. Not simply for her daughter, but for the cause. Community: a superpower, and a super way to hone advocacy, build better teams for your own family and find others so often, just like you…
Wendy Sue Swanson is a pediatrician who blogs at Seattle Mama Doc. She is the author of Mama Doc Medicine: Finding Calm and Confidence in Parenting, Child Health, and Work-Life Balance.