A Guiding Hand, a Listening Ear, an Open Heart

By Zan Hale

Things were tough for Christina Ellison and her son Christopher a few years ago. Stress at home, school and work combined to make it difficult to manage Christopher’s type 1 diabetes.

“We were caught in a bad cycle,” Christina says. Christopher, now 12, had changed schools, and the nurse at the new one wouldn’t administer his insulin. Christina needed to be at the school every day, which meant she was constantly missing work. That added to financial stress at home. They were missing doctor’s appointments, too, and Christopher was admitted to the hospital for diabetic ketoacidosis, a serious problem when blood sugars are too high for too long.

Enter Tawana Casey, a community health worker (CHW) with the Diabetes Center at Children’s Hospital of Philadelphia. CHWs are nonmedical staff who help families manage the challenging parts of life beyond medical matters. They help families get on track to successfully care for their child’s diabetes and to position children to develop the lifelong skills needed to manage their health now and in the future.

A coach, not a crutch

For the Ellisons, the first step was working with Casey to create a list of goals: making and keeping appointments with the Diabetes Center medical team, ensuring refills of insulin and medical supplies were ordered so they didn’t run out, connecting with community resources, and improving Christopher’s care at school.

“I don’t do these things for families,” Casey says. “I help them find solutions so they can accomplish the goals themselves. That’s the path to sustaining the changes.”

One of Casey’s most important roles is to listen. “I admit it took me awhile to really open up to Tawana,” Christina says. “But once we had deeper conversations, she could really understand what we were going through. That was important to improving our situation.”

Casey concurs. “We developed a solid relationship, which helped her believe the process does work. I could be a coach, encouraging her.”

And control of Christopher’s diabetes improved month by month.

Complementing the Diabetes Center team

The Diabetes Center has endocrinologists, nurse practitioners, certified diabetes educators, social workers, nutritionists, child life specialists and a psychologist who examine, teach and support each family. For most families, this comprehensive team approach puts children on a path to successful diabetes management. Community health workers were introduced in 2018 as a pilot program to give more support to families that face social-economic hurdles that prevent them from safely and consistently managing their child’s diabetes.

While CHWs have a basic understanding of diabetes and its care, they are not a source of medical information and cannot answer specific diabetesrelated or health questions.

A CHW works with an individual family for six months, visiting (in person or, during the pandemic, virtually) more frequently at first and then, as progress is made, less often.

The program also created community support events to provide opportunities for families to connect with each other and the diabetes team. Kids and parents can join facilitated discussion groups to share their experiences and learn coping techniques, which helps fight feelings of social isolation.

Because of its success, CHOP would like to offer a CHW program to families whose children have other chronic, life-long conditions. These services are not covered by insurance, though, so program growth depends on philanthropy.

Families like Christopher’s are a testament to the importance of services community health workers provide. “Tawana was such a big help to us,” Christina says. “On a scale of 1 to 10, she’s an 11.”