UPMC Children’s Pediatric Endocrinology Division Enhances Psychosocial/Behavioral Health Support for Patients and Families with Diabetes

As anyone living with or caring for someone with diabetes knows, the daily perseverance and vigilance required to manage blood glucose levels and avoid serious disease complications can be daunting. Diabetes never takes a break. It is always present and affects every aspect of a child’s life. Even individuals with a strong support network and financial resources can sometimes face struggles and challenges. Adjusting physically and psychologically to new routines and expectations can be particularly hard for children and families newly diagnosed with the condition.

"One day, they seem fine, and the next day, they are in the hospital receiving a diagnosis of diabetes and all that entails. It's a profound shock to the entire family unit," says Katherine Vu-Boast, MD, assistant professor of Pediatrics and associate clinical director of Diabetes in the Division of Pediatric Endocrinology at UPMC Children’s Hospital of Pittsburgh.

Following a new diagnosis of diabetes, pediatric patients and their families often find themselves grappling with a host of challenges. Receiving the initial diagnosis can lead to feelings of grief, anger, anxiety, and stress. This distress is often exacerbated by the need for families to learn an entirely new language and lifestyle. Dietary changes, regular physical activity, blood glucose monitoring, and medication use must become part of the daily routine. The discipline and planning required to manage diabetes at home, school, daycare, sports activities, and other contexts can be overwhelming for an adult, let alone a child.

“Distress and adjustment concerns for the youth and their family are common following a new diagnosis. These reactions often include anxiety or anxious distress, behavioral concerns, or mood changes,” says Elizabeth Grandelis, PsyD, clinical assistant professor of Pediatrics and the embedded psychologist supporting the Division of Pediatric Endocrinology at UPMC Children's. “I typically frame adjustment in terms of layers that include processing and accepting the diagnosis and acclimating to managing diabetes at home, in work or school settings, and in various social situations in the community. Commenting on and normalizing adjustment reactions for families at onset is valuable. In this way, they are better prepared to recognize when and how to seek support while hopefully feeling validated from the onset.”

Behavioral Health Consults for Newly Diagnosed Inpatients

The Division of Pediatric Endocrinology at UPMC Children’s has a long history of studying, designing, testing, and integrating psychosocial and behavioral health support programs and interventions into the inpatient, outpatient, and community settings for diabetes patients.

“We view behavioral health support as an integral part of our patients’ care,” says Dr. Grandelis. “Many patients and families who request behavioral health support or have been referred by their medical provider have shared their appreciation of the multidisciplinary team approach and the collaborative care that this provides.”

Beginning in 2022, the Division incorporated a psychosocial consultation for every pediatric patient admitted with a new diagnosis of diabetes, regardless of the type of diabetes or the patient's age. This offers multiple benefits for patients and families who are thrown into a situation of rapid change, adjustment, and need for education and support.

It is well-established that psychosocial stressors and behavioral health or coping issues can negatively impact an individual's glucose levels and ability to engage in lifestyle and health activities that promote overall wellness and glucose control. These stressors or behavioral challenges can exist at the time of diagnosis or crop up over time. Oftentimes, pediatric patients and their families don't know about or access behavioral health providers until problems have been present for some time and perhaps have already become severe.

"Our new inpatient behavioral health consult program short circuits that dynamic," says Dr. Vu-Boast. "Even if it's just an initial introduction between Dr. Grandelis and the family. It is important to let them know of the available resources and help for their journey. It's about establishing a strong connection at the very outset and letting the families and patients know that they are not alone."

The disease process and how children and families adjust to it and cope at different times and ages is very fluid and individual. At the time of diagnosis, patients and families may have many questions but often do not know what challenges to expect or even which questions to ask. Connecting with a behavioral health provider can give the newly diagnosed a sense of direction on where to go for help and when to reach out in the future.

"A lot of the initial questions that we help patients and families grapple with are medical, such as dietary changes and insulin dosing, but also how they may be affected socially," says Dr. Grandelis. " Some common concerns or questions surround management during sports and activities, the impact of diabetes and management in the school setting, and how to talk to and educate family and friends about diabetes. We ultimately want to normalize adjustment concerns at onset and identify psychosocial needs to establish ongoing support as a team."

Peer-to-Peer Support Groups for Teens

Another recent project within the Division has been developing a pilot program for teens between the ages of 13 and 17 with type 1 diabetes to participate in a peer-to-peer support group. The group is designed to have between 8 and 12 participants in four to six weekly sessions that will be offered on a rotating basis throughout the year.

The first sessions of the teen support groups are being offered virtually through video conference. Virtual sessions open participation up to many more adolescents by eliminating the need to travel.

The concept is simple but powerful: teens supporting teens within a guided environment facilitated by members of the diabetes care teams at UPMC Children’s.

Teen diabetes patients, even those without any underlying behavioral symptoms or disorders who have been handling and managing their condition well, can face struggles as they age. Navigating typical challenges that teenagers face can be difficult. They are learning how to become adults, taking risks, and figuring out the consequences if they do not take their health care seriously. Driving comes into play; romantic relationships begin to develop. New jobs, sports, and the stress and realities of high school in the 21^st century can all be significant factors.

"It's a lot to deal with, and then you throw diabetes into the mix, and things can sometimes go sideways pretty fast with fatigue and burnout," says Dr. Vu-Boast. "So, we look at this time of life for someone living with diabetes as being particularly vulnerable to acute issues or disruptions as to how they view and manage their condition."

The structure of the sessions, guided by Dr. Grandelis, is, in essence, an open dialogue between teens, sharing what is happening in their lives, what challenges they experience managing their condition, and what kind of things have worked for them. Being perhaps the only student in a class or grade with diabetes can be isolating and profoundly affect a teen's emotional health. The peer-to-peer nature of the group opens individuals to a sense of community and support from kids of similar ages with the same condition.

"Opportunities for in-person sessions are also being explored. We know that in-person sessions can be of benefit for cohesion, engagement, and facilitation of therapeutic groups. Some patients and families have also expressed an interest in experiencing face-to-face connections, particularly with the many social restrictions experienced during the lockdowns and virtual learning precipitated by the COVID-19 pandemic," says Dr. Grandelis.

The Division of Pediatric Endocrinology at UPMC Children's Hospital is firmly grounded in principles of evidence-based practice, applying this approach to all clinical programs and new initiatives, including the new inpatient behavioral health consult protocol and pilot peer-to-peer groups. Programs are continuously evaluated for their usefulness to patients and families, feasibility, sustainability, and accessibility. Real-time adjustments are made based on observations and feedback, and longitudinal metrics are studied to gauge long-term impacts on glucose control, diabetes complications, and behavioral health outcomes.

And with this new endeavor, we continue to find new ways to be proactive in addressing the well-documented challenges that many new diabetes patients and their families may face,” says Dr. Vu-Boast.

Learn more about how the Diabetes Program at UPMC Children's Hospital of Pittsburgh continues to innovate new models of care and improve upon existing standards and evidence for how best to care for patients and families with diabetes, ensure optimal long-term health outcomes and support individuals, populations, and communities through education and outreach.