As an organization that provides resources to people who provide support, it can sometimes seem like we’re one step removed from the people we really want to reach, namely young people struggling with the emotional side of illness. Then you end up at a conference like Child Life 2019, held last weekend in Chicago, and you get to talk with the amazing, inspiring, and empowering professionals who are making a difference in kids’ lives every day.
At the Shadow’s Edge booth in the exhibit hall, we had the honor of talking with Child Life Professionals ranging from students seeking internships to 30-year practitioners who have transitioned into the role of professors. We met people providing navigation and support services for kids passing through the E.R., and others working long-term with young patients in infusion centers, and still others working in palliative care and grief support, helping families cope during and after the passing of a loved one.
Across these many expressions of the Child Life profession, we heard one thing in common: Each and every person at the conference wanted to help sick kids — and were looking for resources to help shepherd young people through the emotional challenges that accompany an illness experience.
One of those resources is Shadow’s Edge, our free mobile app that uses graffiti and journaling to help teens and young adults explore and express their emotions surrounding illness. At this conference, we went a step further than speaking with attendees at our booth; to a packed room of over 140 attendees, our founder Sheri, and PhD psychotherapist, Kristi Pikiewicz, presented our research describing the online interactions of ill teens and young adults.
Very basically, data mining of 14 million online interactions regarding illness show that young people ask more questions than there are answers online. Also, while the vast majority of online interactions about illness express negative emotions, there is a subset of young people posting about positive emotional outcomes. We choose to see illness as a journey through the “stages” of Disruption, Disillusionment and Discovery, and it is much more in the stage of Discovery that young people are likely to feel positive about their experience. Thus, Sheri and Kristi suggested that one concrete way to help sick kids may be to help them pass through these stages of Disruption and Disillusionment eventually reaching the stage of Discovery in which perspective widens to include positive aspects of illness.
Now Child Life Professionals know this research as well, which we hope helps them anticipate and meet some of their patients’ needs. Ongoing research in partnership with Lurie Children’s Hospital in Chicago will determine whether this model of growth through illness as represented in our free game, Shadow’s Edge, can lead to outcomes like posttraumatic growth and/or increased wellbeing during and after illness.
As a survivor of young adult brain cancer, our founder, Sheri knows how hard it was for her to connect authentically with her family and friends who were desperately trying to support her. Now it is her philanthropic mission to facilitate the kind of rich connection that helps patients feel better understood and supported. Conferences like Child Life 2019 are a way to spread our message of support, and to help spread our resources with the mission of encouraging young people to look inside for the meaning of illness, eventually joining their peers in the stage of Discovery who understand that illness can, in some ways, expand the richness of life.
Garth Sundem is a parent, husband, and author of books including “Real Real Kids, Real Stories, Real Change”.