Being a teenager is hard enough; when it’s complicated by a chronic disease like type 1 diabetes, it’s even harder.
Enter telehealth, in the form of a monitored discussion board for teens with the disease.
Margaret Grey, DrPH, RN, FAAN, Dean and Annie Goodrich Professor at the Yale School of Nursing, has spent the majority of her career helping patients and families manage chronic conditions, and helping kids — teenagers in particular — manage their diabetes through their teen years so they can reduce their risk of long-term complications.
“I’ve been studying these kids for 30 years,” says the pediatric nurse practitioner, who, prior to assuming the deanship in 2005, served as associate dean for scholarly affairs and was the founding director of the school's doctoral program and the NIH-funded Center for Self and Family Management and a related pre- and post-doctoral training program. “Kids have black and white thinking — and have to manage how to 'not look like a jerk' by being given the skills to manage their disease, to think about it in a different way.”
Grey and other researchers conducted several clinical trials: an advanced diabetic education project and a life skills program, which showed that teens with diabetes' overall health and quality of life were better after going through both programs. Results showed that intensive therapy and better metabolic control reduced the incidence and progression of microvascular and neuropathic complications from diabetes from 27 percent to 76 percent.
But how to maintain those results? According to researchers, "Metabolic control tends to deteriorate as a combined result of insulin resistance that accompanies the hormonal changes of adolescence and lower adherence to the treatment regimen often associated with the desire for autonomy.”
“So we took those interventions and developed an online program kids could do at their leisure," Grey says. It incorporated a monitored discussion board that allowed kids to communicate with others like them. Teens with diabetes overcome their fear of being stigmatized by logging onto the Web site, called TeenCope, with other teens with diabetes and engaging in self-management exercises. The online program simulates situations teenagers with diabetes might encounter by using graphic novel animations that illustrate coping skills lessons from the animated characters. “As kids transition to adolescence, they require more effort and thought,” Grey says.
Peer support is an important component of maintaining a healthy lifestyle, as adolescents face pressures such as not wanting to reveal medical equipment in a social setting, or reveal their medical conditions in a social situation.
In addition, the program will also integrate an online educational program aimed at problem-solving for teens with diabetes. Adolescence is a time when patients neglect self-monitoring, dietary recommendations, and pharmacologic treatments — not because of a lack of knowledge, but due to the decision-making difficulties characteristic of this life stage. Studies show that poor metabolic control in the teen years correlates to reduced self-management in adulthood, making adolescence a key period for developing healthy behaviors. And once teenagers can get a handle on their diabetes, they improve not only their own health, but their families’ quality of life.
“This is a way to give them the skills to think about their condition in a different way,” Grey says.