SAN DIEGO — Young adults with type 1 diabetes often struggle with the new and added burden of managing a complicated disease on their own as they head off to college, yet many clinical providers and diabetes educators fail to discuss the topics that students have questions about, according to a speaker here.
“We realized that the right information wasn’t available,” said Christina Roth, chief executive officer and founder of the nonprofit advocacy group College Diabetes Network, said during the presentation at the American Association of Diabetes Educators annual meeting. “It wasn’t necessarily available in all the right topics, written in the right way, and in a way that was accessible when [young adults] actually needed it. So, our website has become a hub of information specific to young adults with diabetes.”
College Diabetes Network, or CDN, founded in 2009, has evolved to become a network of more than 85 chapters with another 30 in development, Roth said. The organization serves as a platform for collaboration with other partner efforts to identify gaps in the system related to young adults with diabetes and address them to better manage transition risk with resources like the “Off to College” program.
“We want to make this time in life, this transitional period, safer, we want to make it easier and just a little more endurable,” Roth said. “Our job is to create the platform that brings [young adults] together. With their local communities that they work to create so passionately, we’re then able to connect all of them and create this larger community of adults with diabetes that hadn’t existed before.”
To help foster a safer transition, the CDN Off to College Program provides printed booklets for students and their families and informational toolkits for health clinics and diabetes organizations to host local Off to College events.
The tools stress that topics including drinking, managing relationships and mental health need to be discussed in an open and honest way, Roth said.
“It is also important to recognize that the source of the information, and the way in which it is delivered plays a critical role,” Roth told Endocrine Today before the presentation. “Often at this time in life, getting information from a peer will be far more impactful and effective and is more likely to lead to behavior changes.”
Peer support can be critical during this time and foster important connections between young adults with diabetes, Roth said; however, forcing such relationships on a young adult, either by the parent or provider, can have the opposite effect of driving a person away from resources.
“One of the key reasons CDN offers our free student membership is to incentivize students and young adults with diabetes to stay in contact, even passively,” Roth said. “This then creates a continuous line of communication, which, when they are ready, they can use to connect further.”
Parents and providers can start the conversation with college-age young adults by introducing the idea of connecting with peers not as a “support group,” but simply as a way to trade tips and tricks and to talk to someone else who “gets it when they are high in class” Roth said.
Currently, there are no clinical care recommendations related to young adults that mention the role of peer support, Roth said, and she would like to see that change.
“There should be more encouragement for providers to be more proactive in embracing support systems and tools outside of the clinic,” Roth said. “Focusing more on helping their patient put systems in place to support them for all the time in between visits, instead of simply relying on that individual’s motivation being enough, but looking at it as failure when it is not.” – by Regina Schaffer
Reference: Roth C. S21. Off to College and Beyond: Resources and Programs to Launch Young Adults with Diabetes. Presented at: AADE 2016; Aug. 12-15, 2016; San Diego.