The Future: Diabetes Youth and Parent Group
July 23, 2021
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 disadvantaged homes2. According to the University of Chicago Medicine’s 2018-19 Community Health Needs Assessment, 43.2% of children under the age of 18 in our surrounding communities live in poverty, 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 educators at UChicago Medicine, along with pediatric endocrine and psychology team members, decided that a peer support group could be of great benefit to the hospital population of young people with type 1 diabetes and their families. Preliminary research showed there were no groups for support in surrounding pediatric hospitals on the South Side of Chicago, in neighboring suburbs or in Northwest Indiana.
The multidisciplinary team, which also included child-life specialists and a social worker to address the psychosocial challenges of living with a chronic illness, established the group’s goals: providing free psychological, emotional and educational support to youth with type 1 diabetes and their families, with the aim of improving glycemic control, decreasing hospitalizations for DKA and improving quality of life.
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 since the pandemic have moved to a virtual platform, meeting monthly on Zoom.
The gatherings provide a forum for children and families to not only learn about diabetes management and new technology but also to interact with peers and exchange stories and experiences.
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 grateful to the Kovler Diabetes Center for donating funds that paid for craft supplies, snacks, decorations, prizes and free parking passes.
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 more parents and children to join the sessions, continuing on Zoom. To receive additional details, please contact firstname.lastname@example.org.
Bernadine Holland is a certified diabetes resource nurse who welcomes the daily opportunities to empower patients to manage their diabetes confidently, consistently and serenely.
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.
Kovler Diabetes Center
UChicago Medicine offers a patient-centered, science-based approach for managing insulin-dependent Type 1 diabetes, complex Type 2 diabetes, gestational, pre-diabetes and monogenic diabetes.Learn more about our expertise.