Being diagnosed with Type 1 diabetes is often an overwhelming and life changing experience for children and families. Julia Price, PhD, Pediatric Psychologist at Nemours Children’s Health, works to help patients adjust to life with diabetes, using behavioral interventions to help kids and caregivers communicate about managing this complex illness.
A major focus of Price’s work is implementation science, which is aimed at making sure that scientific advances ultimately reach the patients and families who most need them. To raise awareness of this work and demonstrate her leadership in this space, on October 11, Price moderated a panel on community participation and partnerships at a workshop held by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. “This workshop offered a unique opportunity to connect with leaders in the fields of implementation science, health equity and community-engaged research, all focused on improving equitable outcomes for those with diabetes and other NIDDK-related diseases. I left this meeting feeling inspired and excited about new ideas and new potential collaborations,” Price said.
Price also has a new study published in Current Diabetes Reports, in which she reviewed the literature on implementation science in pediatric diabetes. Price recently shared more about how implementation science can benefit patients with diabetes.
What is implementation science, and how does it relate to patient care?
Price: The goal of implementation science is to ensure that all patients are getting the best care, based on the latest research and evidence. When we go to the doctor, we expect that we will receive the most effective and latest interventions or treatments that science has to offer. However, it can take up to 17 years for scientific advances to be translated into the care families receive when they go to the doctor. Certainly, doctors and providers want to deliver the best care to all families, but there are many barriers to doing so. Implementation science aims to understand what these barriers are and to find effective strategies to overcome them.
What should patient families know about implementation science?
Price: Another goal of implementation science is to make sure that families have a way of learning about the latest research themselves in a way that is accessible and easy to understand. Ideally, this knowledge can help families advocate for themselves. They may come to the clinic and say, “I heard about this new treatment that can help me and my family. Do you offer it here?” If it’s evidence-based and appropriate for that patient, the provider may be able to say, “Yes, that could be a good treatment option … let’s talk more about it.”
We also need to engage with families and invite patients and families to be equal partners with researchers. Patients and families have unique expertise on what it is like to live with diabetes. This expertise is invaluable to designing more useful and effective interventions and to developing the best strategies to get these interventions to families who need them. It is critical to partner with a diverse group of families who represent the full spectrum of different families living with pediatric diabetes.
How do inequities seep into diabetes care and management?
Price: There are demonstrated inequities in access to care in diabetes—which, unsurprisingly, contribute to disparities in outcomes. And some families have not been included in our studies evaluating if interventions work or not. Two groups in particular are often underrepresented in our behavioral diabetes studies—families who are Black or African American and families with lower financial resources (of any race or ethnicity). We are wrapping up a pilot study that identified strategies to help researchers do a better job at engaging these two groups in pediatric diabetes studies. In this pilot study, we also learned that many families are unaware of the latest behavioral interventions in diabetes care and that they wished they had been offered to them. This is a systemic issue, and researchers need to do a better job at sharing our findings directly with families.
As a psychologist, what drew you to work with patients with diabetes?
Price: I used to work in Nemours Children’s Diabetes Collaborative Clinic, where we would see so many families and teenagers and kids with Type 1 diabetes who were working so hard to manage this demanding disease while also just being a kid or teenager. Many would share feelings of shame or guilt about not doing more to manage their diabetes. Parents would often share fears and worries about their children’s health. Kids sometimes feel different from their peers and may be missing extracurricular activities to take care of their diabetes. And there is often a lot of family conflict, because parents are worried about their kids’ health, while the kids feel like their parents are badgering them. As a psychologist, I know we have interventions to help families with a child with Type 1 diabetes to communicate better, decrease diabetes distress and do more to manage diabetes. And I saw that so many families could benefit from this kind of care.
