Type 1 Diabetes: Jaaron’s Story

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A CHOP community health worker is helping Jaaron and his family better manage his type 1 diabetes by offering support like accompanying them to appointments and connecting them to nearby resources.

Jaaron outside smilingTo really understand what it is like to help your child manage type 1 diabetes, Kanika Smith says you need to come to her Southwest Philadelphia home, see how she lives, and walk in her shoes. “It can be really hard sometimes,” she says of making sure her 16-year-old son, Jaaron, keeps his sugar levels under control. Type 1 diabetes affects all aspects of a child’s life, but life keeps happening anyway. “That’s why Tawana is such a big help.”

Tawana Casey is a community health worker from Children’s Hospital of Philadelphia (CHOP) who helps families like Jaaron’s, that have a child with a chronic medical condition and need a little extra help.

Casey is not there to give medical advice; Jaaron has his team at CHOP’s Diabetes Center for Children for that. Instead, she serves as a family advocate and helps connect families like the Smiths to services in their communities.

‘She understands’ families’ broader needs

“She’s a great go-between,” Kanika says. “She understands me and what we’re going through, and helps explain that to our doctors and nurses.”

Once, when Jaaron was hospitalized for diabetes-related complications, Casey came to CHOP and supported Kanika during the stay. Casey helped Kanika and Jaaron communicate better with care providers. When Jaaron was discharged, Casey was there to strategize out how to help him stay out of the hospital.

All children with type 1 diabetes need to be seen by their medical team four times a year; however, this can be a real challenge for many families. A community health worker can help families plan for their Diabetes Center appointments, by planning alternative transportation choices and making sure each family can make the most of each visit with their diabetes team.

As a single mother on a limited income, Kanika appreciates the help. “We come every three months to see our diabetes team, plus two appointments with the diabetes educator to learn more about the continuous glucose monitor,” a device that makes it easier to track his blood sugar. Attending the education appointments is really important to improving his diabetes control and would have been more difficult without Casey’s help.

“Sometimes, as a parent, I get emotional and have a hard time expressing what I really want to say,” Kanika says. “Tawana helps by explaining what I’m trying to say so the doctor understands me better.”

Add asthma and GERD to type 1

Jaaron also has asthma and gastroesophageal reflux disease, or GERD for short. Treating those conditions can play havoc with managing his diabetes. “If he has an asthma attack and I give him prednisone, it affects his blood sugar,” Kanika says. “If he gets a cold and I give him medicine, it has sugar in it and that raises his blood sugar. It can get complicated.”

Casey acts as a link between the family at home and the medical team at CHOP to help coordinate care for these interwoven medical conditions as well.

Since Jaaron’s most recent hospitalization, he’s stayed on track and his sugar levels have been within the desired range — and, most importantly, he’s stayed out of the hospital. Those improvements have coincided with the period Casey began working with the family, which is the goal of the community health worker program. Casey visits the Smiths every other week for six months and will work with them for a full year.

Jaaron also struggled emotionally with having diabetes. “He’s a typical 16-year-old,” Kanika says. “He plays football and baseball. He wants to go outside and be just like everyone else — without having to carry a book bag with his supplies in it.”

The goal of the Diabetes Team is to enable Jaaron to do everything any other child can do, and Casey plays a critical role in supporting this mission.

Diabetes is the start for community health workers

Supporting families that have children with diabetes is the initial step in CHOP’s community health worker (CHW) program. Eventually, the aim will be to have CHWs available to help families that have a child with any chronic disease and are struggling to keep their child healthy.

Many children with chronic diseases also have significant challenges at home. These can include mental health issues, domestic violence, food insecurity, lagging literacy or housing insecurity. Sometimes, these challenges make it impossible to prioritize getting to medical appointments or navigating the healthcare system.

CHWs can have an important role in supporting CHOP’s most vulnerable families and helping them achieve the best outcomes for their child.

A team at CHOP is leading the way in developing this intervention. Colin Hawkes, MD, PhD, and Terri Lipman, PhD, CRNP, from the Diabetes Center, as well as Leigh Wilson, MSW, Alan Tuttle, MSW, and Tressa Dabney, MSW, from Social Work have developed the program.

Families’ input guided CHW Program

In order to learn about challenges our families encounter and to develop a program that provides needed support, the CHOP team first assembled a Parent Advisory Committee. Kanika was part of this committee that was consulted as CHOP planned the CHW program. “We knew it was important to get family input,” says Wilson. “We took our ideas to the Parent Advisory Committee, and the moms and dads gave us honest and really helpful feedback.”

For example, while community health workers do not answer specific health- or treatment-related questions, they will help the parent connect with a CHOP healthcare provider who can answer those questions. The CHW assesses each family’s situation and works with parents and children to set goals and then make a plan to achieve those goals that lead to improved health outcomes.

If parents are struggling to access healthy foods, their community health worker will help them locate the best shopping options, figure out how to get there and assist them in signing up for food stamps or other government benefits, if appropriate. “The community health worker acts as a connector,” Wilson says, “connecting families to services they need. An important part is that parents set the goals so they’re invested in meeting those goals.”

Studying outcomes: Is it working?

The team at CHOP is conducting a study of the program, making sure the interventions are accomplishing the goals of helping families keep their children healthier, out of the hospital and away from the Emergency Department.

The program was launched as a Chair’s Initiative. Chair’s Initiatives are CHOP-funded internal grants to jumpstart promising ideas to improve patient care. Diabetes was chosen as the pilot condition since mismanagement can have life-long consequences. Children with poorly controlled diabetes are likely to develop complications, including kidney failure and blindness later in life. Those types of concerns make it extremely important to get diabetes management right from the start.

“The community health worker can provide a type of support that our diabetes care has been missing, and we believe we will see an improvement in the lives of patients with this challenging disease,” says Dr. Hawkes.

Chair’s Initiative funding lasts until July 2019. After that, the CHW program will need support from donors to continue, as CHOP is not reimbursed by insurance for these services.

Kanika believes all families that struggle to manage their child’s chronic disease would benefit from support like she’s received from Casey. “It can be scary and stressful at times, especially as a single parent,” she says. “It’s been really helpful to have Tawana supporting us. I’d definitely tell other families to try having a community health worker help them.”