Even with a chronic illness, a happier and healthier life is possible. That is the message behind the “Bringing Science Home project” – a new USF Health initiative to tackle the practical, everyday stresses of living with disease.
A $5.66 million award from the Patterson Foundation, a private, charitable trust organization, will finance the project, which was announced by USF President Judy Genshaft on Friday.
“The project aims to model and change the model of chronic disease education and care,” Genshaft said.
To accomplish this, USF Health has partnered with the Patterson Foundation to launch ongoing case studies on how to live with chronic disease. Its first study will chronicle teenagers transitioning from high school to college with diabetes.
Stephen Klasko, dean of the USF College of Medicine and senior vice president of USF Health, said the study is intended not only to bring science home, but also tos “bring home science.”
“We need to go beyond the mere physical needs of a patient and look at their emotional needs as well,” Klasko said. “To ensure that their lives can be the best that they can be.”
Tiina Ojanen, assistant professor in the department of psychology, said that it’s important to have both the physical and emotional aspects of patients’ diseases accurately documented when they’re struggling to transition from one stage of life to another.
“Some of the questions we’re trying to answer are whether or not these teens have social or relationship issues,” Ojanen said.
It was the University’s willingness to address these issues that first gained the attention of the Patterson Foundation, said its President Debra Jacobs.
“They looked at how they could help their patients live with diabetes, thrive with diabetes – rather than become their disease – and that spoke to us,” Jacobs said.
Nicole Johnson, executive director of the project, has had diabetes for 17 years.
“When you live with a chronic disease, it goes with you on your dates, with you to school, to bed, and it wakes up with you in the morning – it’s really overwhelming,” Johnson said.
She said the project is ultimately about “sharing, working together to co-design and co-create solutions” and to help people live optimistically.
“We want them to feel prepared for every life stage so that they understand what’s going to happen at that stage and can feel confident that their disease is just along for the ride,” Johnson said.
Teens participating in the project have the option to be a member on a youth advisory board, she said. Participants can donate their time to share ideas and give their advice to both USF Health and the foundation on where they should go next.
Laura Bernstein, a youth advisory board member and a senior at Seminole High School, said that living with diabetes is “frustrating” and something you “never get a break” from it.
Fellow youth advisory board member and junior at Jesuit High School Robert Colon said that frustration can stem from living in a “world of constant education. You have to teach yourself – there is no textbook.”
“I think that’s what this project is going to do,” Colon said. “It’s going to teach us how to go to school with it, how to party with it and go to the mall with it.”