DISSERTATION. A program for young people with congenital heart defects that is intended to facilitate the transition from pediatric care to adult care increases participation, independence and a higher degree of empowerment when provided in a person-centered manner and with a pediatric approach, according to a recent dissertation
Thanks to improved care and treatment, more and more children diagnosed with long-term conditions survive to adulthood despite congenital heart defects, diabetes, and organ transplants. Many of them will need life-long follow-up, treatment, and support, but as these individuals transition from pediatric care to adult care at age 18, they face great expectations of taking responsibility for, participating in, and staying informed about their health.
Vital to prepare adolescents
It is well known that when adolescents enter adulthood and transition to adult care, they will need to develop the necessary skills for participating in the care of their disease in their adult life. Specific transition programs have proved effective in preparing adolescents for both adulthood and for the shift of care providers in the adult care system.
Markus Saarijärvi, a doctoral student at the Institute of Health and Care Sciences at the University of Gothenburg, has studied such transition programs:
“Introducing these transmission programs so that they become part of daily routines can be a challenge and requires knowledge of factors that can support or obstruct the process. It is also important to try to understand the mechanism that changes adolescents into independent young adults.
Person-centered approach
The study showed that adolescents who participated in the program thought that the person- and youth-centered approach was important. The meetings with the transition coordinator/specialist nurse, who was trained in person-centered care and applied communication tools designed for adolescents, created a safe environment in which they dared to share their experiences. This significantly helped to increase participation, knowledge and independence in their care and treatment.
The results also highlighted parts of the program that were more difficult to conduct and implement. These factors included the receptiveness and willingness of adolescents and health workers to participate in the program, organizational factors at participating hospitals, and parents’ needs.
A cost-effective solution
When introduced as part of the care path, the transition program does not increase costs for the medical care system.
“We could see that the costs of the program were restricted to the cost of the transition coordinator who, in our study, worked in addition to the regular staff. If the program was introduced as part of the normal care path, this would be a task for specialist nurses who already work at clinics.
We also need to study the long-term effects of a structured transition from pediatric care to adult care and whether we can achieve long-term cost savings when adolescents are better prepared and more familiar with their situation.”
- Defense of dissertation: Markus Saarijärvi will defend his dissertation on February 18, 2022.
BY: LOVISA AIJMER
