How to Engage Young Adults with Type 1 Diabetes: A New Study
Type 1 diabetes affects the mental wellbeing of everyone living with it, and this can be particularly challenging for young people who are also learning the essential lessons of self-care for adulthood. A recent study by the National University of Ireland (NUI), Galway, indicated that there is “a lack of high-quality, well-designed interventions, aimed at improving health outcomes for young adults with Type 1 diabetes.” This study, called D1 now, is significant because, according to the researchers, it’s one of the first to examine “interventions,” or solutions, and the role they play in ensuring that young adults have the best possible outcomes in their independent diabetes management.
The Galway-based team, with a network of stakeholders across Ireland, the UK and beyond, found in the D1 now study that young adults are the driving force behind change in diabetes care and that healthcare providers need to change the way they work with young adults.
Since 2014, the D1 now researchers have worked with Galway University Hospitals to examine how young adults interact with their diabetes teams and how consistently they attend appointments to figure out ways to improve the diabetes management and overall health of these patients. Along the way, D1 now has also come up with new ways to engage with the Type 1 community.
The Strength in Numbers (SIN) Conference, held in June 2016, was a three-day international symposium targeting young adults and their engagement in their own diabetes management to result in better outcomes. A Young Adult Panel, a key part of the research, was consulted during the planning of the SIN conference and one of the highlights of the event: a Hackathon to brainstorm ways to use technology to support young adults with Type 1.
The Young Adult Panel offered opportunities for engagement with the local Type 1 community. Gertruda Ceburntyne, a 20-year-old Biomedical Science major in Galway and member of the Young Adult Panel, says, “Before I joined the Young Adult Panel, I didn’t know any fellow young people with diabetes. I felt like going to the diabetes clinic was like going into an exam. After meeting new people and hearing about what worries they have and how they cope with Type 1, it is much easier to go to an appointment with the diabetes clinic knowing that there are other people in a similar boat.”
Lisa Hynes, currently a postdoctoral researcher at West Virginia University, was part of the organizing team for the conference while working on the D1 now study. This event brought together stakeholders in the diabetes community to “give feedback on our work and produce [an intervention] to improve self-management among young adults with Type 1 diabetes in Galway,” Lisa says.
“Because young adults are experiencing so much change, they rely a lot on the support and information they get from diabetes service providers. Unfortunately, the diabetes clinic is a busy place, where young adults don’t always meet the same service provider. It seems to me that service providers really know what kind of service they would like to provide to young adults but they are limited because they are so busy and can struggle to get to know young adults during appointments.”
To find out more from a young adult who is at the receiving end of these visits, I posed a question to the Young Adult Panel: What should healthcare providers keep in mind when working with young adults with Type 1? Gertruda shares that empathy is critical. “First and foremost, they need to keep in mind that unless they themselves have Type 1 diabetes, they will never know how difficult it is, living with the illness. They need to put themselves in the shoes of a young adult with Type 1 and understand how much of an inconvenience it is to have this constant pressure to worry about your health.”
Aoife Gannon has had Type 1 for 15 years. Her response was that diabetes care teams need to connect with patients: “People with Type 1 aren’t computers or robots. They are people who genuinely want to get on with life. I think [healthcare professionals] need to brainstorm or generate ideas to help motivate people and understand where we’re coming from.”
Aoife also participated in the Hackathon, which she describes as “a gathering where programmers collaboratively code in an extreme manner over a short period of time. We were split into groups of twos [according to] age and topic” to come up with technology solutions to reach young adults with Type 1. The four fresh ideas included a Transition App to help ease the switch from pediatric to adult care; an Insulin, Pumps, Understanding and Management (IPSUM) app for patients and providers to share information; SnapD1, a Snapchat channel with motivating social media content; and DiaLog, an app for patients to connect and share their experiences with diabetes teams when connected to hospital wifi.
SnapD1 took home the prize for Best Pitch Award, and the results of the event were felt almost immediately among young adults with Type 1 who were involved. Cameron Keighron, a 22-year-old recent university graduate, describes the excitement he felt leading up to the SIN Conference: “It was the culmination of two years of our work. Young adults were going to be heard and listened to about their diabetes management. We were about to lead the way in diabetes research in Ireland for young adults [with Type 1].”
Afterward, Cameron says, “I felt invigorated, I felt that I could make a real difference to diabetes care and wanted to continue this. We had all put a lot of work into the previous two years and the conference being such a success was really rewarding.
I learned a lot about disseminating research as well as the importance of patient involvement. I learned about the importance of breaking down perceived barriers and reducing the amount of jargon used when trying to make a difference in the healthcare of Young Adults. I also improved my own public speaking and networking skills.”
Aoife left feeling that patients, as well as healthcare teams, need to think outside the box in terms of their own diabetes management. “We need to understand that if we open up to them, they can be our helpers. It is a difficult barrier to overcome.”
What are the next steps for the D1 now study? Lisa Hynes is hopeful about positive developments coming up: “We recently received funding from the Health Research Board in Ireland to move onto the next phase of the research. In this, we will roll out a pilot intervention that was developed during the work we’ve already completed, to find out if people will like it, if it’s possible to implement it in busy diabetes clinics, and if it can achieve the aim of improving young adult diabetes self-management. We are working with a fantastic team of collaborators from Ireland, the U.K., and beyond to complete this work, so who knows how far this can go?!”
Hynes, L., O’Hara, M.C., Jordan, V., Hutchinson, O.C., O’Dea, F., Byrne, M., & Dinneen, S.F. (2016). Strength In Numbers Hackathon: Using a novel technology-focused brainstorming activity to engage stakeholders in intervention development. The European Health Psychologist, 18, 6, pp. 287-293.
MC O’ Hara, L Hynes, M O’Donnell, N Nery, M Byrne, SR Heller and SF Dinneen, for the Irish Type 1 Diabetes Young Adult Study Group. A systematic review of interventions to improve outcomes for young adults with type 1 diabetes: Towards the development of a new intervention. Diabetic Medicine, [Epub ahead of print], 20 OCT 2016, DOI: 10.1111/dme.13276
O’Hara, M.C. “Experiences of Patient Involvement in the Development of an Intervention for Young Adults with T1D: The D1 now Study.” NUIG Health Psychology Blog. 14 November 2016.