A group of adolescents gathered at the downtown Nashville Public Library last week for a three-day Digital Storytelling Workshop to learn how to write, edit and produce a video about managing their type 1 diabetes.
The project is part of research by Shelagh Mulvaney, Ph.D., associate professor of Nursing, and her team into the design, development and testing of a Web and mobile phone-based self-care support system for this population.
“A lot of the recent discussion in science and technology has been focused on ‘design research’ as it relates to identifying and implementing the best methods of integrating patients into the health care design process, but little is known about what really engages people in behavior change and support systems,” said Mulvaney.
Engaging teens in telling first-person stories about overcoming a challenge in self-care helps that individual, and even more importantly, may help other adolescents who view the stories that model positive coping and problem-solving. The stories are embedded within a digital program that guides individual self-care problem-solving.
Adolescents with type 1 diabetes are at high risk for poor self-care and glycemic control partly due to the complexity and frequency of the tasks, as well as psychosocial and developmental barriers to self-care.
“In order to address the needs of adolescents with type 1 diabetes we created an Internet adherence problem-solving intervention, named YourWay that integrates first-person diabetes stories as part of the learning experience,” said Mulvaney.
Last week’s workshop is the first time Mulvaney and her team have used an approach that allows the teens to actually create the digital stories themselves through photo editing and audio recording at the new Teens and Technology Space (Studio NPL).
Research shows that for the storyteller, the story creation process can be a meaningful opportunity to improve self-awareness through reflection on one’s own life events and emotional responses. For adolescents with type 1 diabetes it offers a chance to reflect on particular obstacles they have faced in their self-care and the steps they took to overcome them.
Allison Myers from the Berkeley, California-based Center for Digital Storytelling, taught the teens how to tell a compelling story, focus the message, and narrate and edit using the latest software technology. The workshop was organized by Vanderbilt team member Sarah Vaala, Ph.D., an expert in children’s media.
Sixteen-year-old participant Claire Trabue was diagnosed when she was 2 and explained that diabetes has not been a focus of her life. Her video reflects an epiphany while attending a summer camp for girls with diabetes.
“A lot of the girls didn’t treat their body the right way. They didn’t accept their condition and it was an awakening that gave me a lot of perspective,” said Trabue, whose video features friends, neighbors and family members who have supported her.
“My parents are constantly nagging me about my diabetes… ‘remember to do this, don’t forget to do that,’” said Jack Sevelius, a 14-year-old participant who loves junk food.
“My parents know I can eat sweets and stuff, and at the end of my film I tell them I will include them more in what I do. I know the nagging is because they love me.”
The results of the research, funded by the National Institutes of Health, will help identify useful patient-centered design research methods and create an engaging and effective program that can be disseminated nationally. The final aim of the grant is to eventually conduct a randomized trial of the self-care intervention.
