Medical and surgical advances have given young people with congenital or long-term conditions from childhood an increased life expectancy. This group of young people is in need of life-long specialist care to increase the possibility of a long and healthy life. The transition of young people with long-term conditions from pediatric care to adult healthcare has been increasingly recognized in recent decades. Problem areas in the care of the transfer have been expressed both by patients and their relatives - an issue that is also mentioned by the patient organizations.
In addition, healthcare professionals in pediatric and adult health services are requesting improved routines for promoting well-being and medical outcomes for adolescents and young adults in transition to adulthood.
The main purpose of this project is to implement an effective and sustainable person-centered transition program for adolescents with long-term conditions in Swedish healthcare.
1) To investigate the barriers and facilitators for an implementation and establishment of a transition program for adolescents with long-term conditions at university hospitals in Sweden providing specialized care for adolescents with long-term conditions
2) To implement a transition program using predefined implementation strategies at these university hospitals and to evaluate the effect in terms of patient reported outcomes (empowerment, transition readiness, disease-related knowledge and transitional care experience) and healthcare providers attitudes towards transitional care along with implementation processes
3) To evaluate the implementation process of the transition program and the implementation strategies used to facilitate implementation of the program
Significance and novelty of the project
At present, there is a strong implementation momentum for person-centered care in Sweden. Moreover, routine adoption of transition interventions is getting a higher priority by clinicians, managers, and administrators. This suggests that implementation research on transition programs for adolescents with long-term illnesses is timely. Thus, the project relates to the invitation from GPCC on enabling transition to person-centered healthcare through the design of studies targeting the implementation and evaluation of implementation strategies to promote the transition to more person-centered healthcare. The Stepstones-Implement project can therefore accelerate the translation of evidence into clinical practice by implementing a highly needed new care model. Furthermore, this can also provide evidence of which implementation strategies are more successful in implementation, adoption, and maintenance of person-centered care in healthcare.
This project is carried out in cooperation with the university hospitals in Gothenburg, Linköping, Lund, Stockholm, Umeå and Uppsala. The project started fall 2021.
Project leader for Stepstones-implement: Ewa-Lena Bratt (firstname.lastname@example.org) and Markus Saarijärvi (email@example.com)
Within the research group: Carina Sparud Lundin (firstname.lastname@example.org), Sandra Skogby (email@example.com) Åsa Burström (firstname.lastname@example.org)
Outside of the reserach group: Lars Wallin Dalarna University (senior advisor), Peter Nordkvist former secretary of the Swedish Childrens Heart Association and Honorary Doctor at Sahlgrenska academy, University of Gothenburg, Britt-Marie Ekman-Joelsson Pediatric Cardiology Unit, Queen Silvias Childrens Hospital, Gothenburg