The hypothesis is that young people who undergo a person-centred transition programme over a 2.5-year period (ages 16-18.5) increase their empowerment and demonstrate higher participation and self-determination regarding their health than young people who receive conventional care. This is evaluated at the age of 18.5.
The study is a multi-centre study. At the two units at Karolinska University Hospital in Stockholm, adolescents with type 1 diabetes, who have consented to participate, are randomised to care according to current routines or to a person-centred structured transfer programme. Thsi programme is corresponding to one that was previously conducted in the group of young people with congenital heart defects.
The project is expected to continue until 2026.
Process evaluation and a qualitative study are conducted in parallel with the randomised study. A related project consists of the development and evaluation of an instrument intended to investigate young people's experiences of preparations for the transfer to adult healthcare.
The study will provide scientific support for whether transition programmes are effective or not. If increased participation and self-determination are achieved, this can affect self-care ability and thus improve the long-term prospects for young people with heart defects and diabetes to live a good and longer life.
There is a great demand for evidence-based interventions to develop care in connection with the transfer from paediatric to adult healthcare.
The project is being carried out at Astrid Lindgren's Children's Hospital, Karolinska University Hospital in Huddinge and Solna.
Collaborators in the project
Project manager: Carina Sparud Lundin
Project coordinator: Anna Lena Brorsson, Karolinska Institutet
Doctoral student in the project: Mikaela Hällström
Mariela Acuna Mora, Ewa-Lena Bratt, Philip Moons, Markus Saarijärvi.
Outside the research group: Anna Ek, Elisabeth Jelleryd, Torun Torbjörnsdotter, Astrid Lindgren's Children's and Youth Hospital, Karolinska Hospital, Stockholm
Martina Persson, Karolinska Institute and Sachsska Children's Hospital, Södersjukhuset, Stockholm