About

Research Shows Need for Multidimensional Approach to Teens with Chronic Diseases

For Immediate Release
July 14, 2020

Contact:
Justin T. Worsley
917-746-8299 * jworsley@napnap.org

Research Shows Need for Multidimensional Approach to Teens with Chronic Diseases
Authors interviewed teens with type 1 diabetes, ADHD, cystic fibrosis and others.

NEW YORK, July 14, 2020 – While it is no secret that teens with chronic diseases face significant challenges as they transition to independence, a new research article in the Journal of Pediatric Health Care highlights the difficulties faced by these teens and outlines the dynamics that impact their transitions.

Typically, developmental stages of adolescence have been used for characterizing transition, however, the research suggests that understanding the psychological, physiological, and social issues of teens with chronic diseases requires a multidimensional approach that focuses not on age and transition stages but instead on mental readiness, personality traits, and characteristics.

“We cannot claim that a 16-year-old is at the late transition stage and almost ready for independence in self-care. Transition stages are dynamic and independent from teen’s age as it depends on the teen's mental state or readiness, which could reflect their transition,” said lead author Emre Sezgin, Ph.D.

Thirteen adolescents with chronic diseases, including type 1 diabetes, cystic fibrosis, attention deficit hyperactivity disorder and epilepsy among others, were interviewed face-to-face along with 13 caregivers. The journey of each patient archetype showed how the partnership between caregivers and teens looks different and how solutions can be designed to help teens take a stronger role in their transitions. The research revealed what would be appropriate for each stage of transition to independence.

“Equipping and coaching caregivers to be aware of what is an appropriate level of responsibility for therapy and self-management at each transition stage is key to helping them know how to support their teen to a successful transition to independence,” said co-author Monica Weiler, Ph.D.

The research also highlighted the changing relationship of the teen and caregiver over time and states that determining the archetypes between the two can help providers and researchers to characterize the population with chronic diseases and eventually provide personalized assistance and feedback for individuals with chronic diseases.

“This research provides a roadmap for the next generation of digital health solutions toward the best experience for all stakeholders,” said co-author Simon Lin, MD, MBA.

Also contributing to the article was Anthony Weiler, BFA and Laura Hart, MD, MPH. The article, titled “It Is a Life Journey: A Roadmap of Teens With Chronic Diseases in Transitioning to Independence,” was published in the July/August 2020 edition of Journal for Pediatric Health Care and can be accessed digitally.

# # #

The National Association of Pediatric Nurse Practitioners (NAPNAP) is the nation’s only professional association for pediatric-focused advanced practice registered nurses (APRNs) dedicated to improving the quality of health care for infants, children, adolescents and young adults. Representing more than 9,000 healthcare practitioners with 18 special interest groups and 53 chapters, NAPNAP has been advocating for children’s health since 1973 and was the first APRN society in the U.S. Our mission is to empower pediatric-focused advanced practice registered nurses and key partners to optimize child and family health. www.NAPNAP.org