The Future: Diabetes Youth and Parent Group

Diabetic ketoacidosis (DKA) is a life-threatening yet avoidable acute complication of type 1 diabetes. Alarmingly, five or more episodes of DKA increase the risk of premature mortality by 23%¹. In young people, the psychological burden from living with diabetes has been shown to be highly predictive of frequent DKA, particularly for youth from economically challenged homes². According to the University of Chicago Medicine’s 2018-19 Community Health Needs Assessment, 43% of children under the age of 18 in our surrounding communities live at poverty level, vastly limiting their access to the resources and support necessary for managing a chronic illness³.

Teenagers with diabetes widely report feelings of isolation from their peer group. The resulting loneliness is a compounded concern because it may lead to poor diabetes self-management. Evidence indicates that interventions that provide support, education and resources for children and families undergoing the challenges of living with diabetes result in improved consistency in treatment regimens, improved glycemic control⁴ and a decreased necessity for repeated hospitalizations.

In 2018, the inpatient diabetes care and education specialists at UChicago Medicine, along with pediatric endocrine, psychology, and child life and social work team members took action. They decided that a peer group could be of great benefit to the hospital population of young people with type 1diabetes and their families. Preliminary research showed there were no type 1 diabetes groups for support in surrounding pediatric hospitals on the South Side of Chicago, in neighboring suburbs or in Northwest Indiana.

The team collaboratively resolved not to call the service a “support group” due to any preconceived associations the term may carry that could discourage their target teenage demographic. The interdisciplinary group, worked to develop a format that would assist in providing a service addressing the psychosocial and educational challenges of living with a chronic illness. They established the group’s goals: providing free psychological, emotional and educational support to youth and families with type 1 diabetes and for attendees to meet others who have the same condition. Outcomes they hoped their effort would garner were to improve glycemic control, decrease hospitalizations for DKA and above all bolster quality of life for parents and their children.

The team identified a population of patients with type 1 diabetes at UChicago Medicine Comer Children’s Hospital and surveyed both children and parents regarding their interest in a group. More than 100 responses were received — 30% from youths old enough to respond and 70% from parents of younger children. The response was overwhelming, showing that 91% were interested in attending and had many topics they wanted to discuss.

In July 2019, the first group meeting was held, welcoming youths of any age. The young people held a contest to name the group and chose The Future: Diabetes Youth and Parent Group. The meetings were initially held in person once a quarter, but moved to a virtual platform during the peak of the pandemic. The group now meets every other month and alternate between virtual and in-person meetings. The group has also expanded to youth with type 2 diabetes.

There are separate programs for parents and children. For parents, there are informal open discussions with diabetes experts, including CDCES, a dietitian, an endocrinologist, a psychologist, a child life specialist, a social worker, and guest speakers such as technology specialists. For children, there are informal games, contests, crafts, prizes, and guest speakers who are living with diabetes (Dexcom Warriors and JDRF Youth Ambassadors). The group is funded and supported by the Kovler Diabetes Center and Center for Clinical Professional Practice.

Response has been enthusiastic. Groups have ranged from four to nine families per session. Parents have commented that input from the group’s professional team has helped guide them in making decisions regarding their child’s diabetes, that they appreciate the support the other parents offer, and that they value the technology updates. Children have mentioned that this is their only opportunity to meet others who are going through similar situations related to diabetes, and that they enjoy the chance to win prizes.

Among the four children who attended all three consecutive in-person meetings, only one was admitted to the hospital for DKA between the first session in July 2019 and October 2020. This is significant compared to the experiences of other high-risk young people who expressed interest in attending but did not come to any groups or attended only one session. There were a total of thirteen admissions for DKA among those youth.

The Diabetes Youth and Parent Group team welcomes parents and children to join their Zoom and in-person sessions. To receive additional details, please contact bernadine.holland@uchospitals.edu.

Bernadine Holland is a registered nurse and certified diabetes care and education specialist. Bernadine welcomes daily opportunities to empower patients by assisting them in building skills to manage their diabetes confidently, consistently and serenely.

References

1. Sperling, Mark, A. Recurrent DKA-for whom the bell tolls. Nature Reviews/Endocrinology. 2016:doi:10.1038/nendo.2016.137

2. Sperling, Mark, A. Recurrent DKA-for whom the bell tolls. Nature Reviews/Endocrinology. 2016:doi:10.1038/nendo.2016.137

3. Community Health Needs Assessment 2018-2019, UChicago Medicine: 22

4. Delameter, Alan M., de Wit, Maartje, McDarby, Vincent. Malik, Jamil, A., Hillard, Marisa, E., Northam, Elisabeth, Acerini, Carlo, L.ISPAD Clinical Practice Consensus Guidelines 2018: Psychological care for children and adolescents with Type 1 diabetes. Pediatric Diabetes. 2018: 19(Supp. 27): 237-49.