Stepstones – Transition to adult care for young people with disabilities
Short description
The transition from childhood to adulthood is an important but often vulnerable period for young people with neurodevelopmental and intellectual disabilities. In this project, the research-based transition programme STEPSTONES is further developed to better meet the needs of this group and to provide more person-centred support throughout the process. The programme is developed in close collaboration with young people, their families and healthcare professionals, in partnership with Sahlgrenska University Hospital and Habilitation and Health Services in Region Stockholm. The aim is to strengthen participation, independence and continuity of care, thereby supporting a safer and more secure transition into adulthood.
Background
Over the past decades, transition programmes have been developed internationally to support adolescents with long-term health conditions in the transition from paediatric to adult healthcare. Research shows that such programmes can improve, among other things:
- knowledge about one’s own condition
- self-management and independence
- participation in care decisions
- continuity in healthcare contacts
Despite this evidence, implemented transition programmes are still lacking across large parts of healthcare.
In Sweden, the STEPSTONES programme (Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS) has been developed and evaluated in randomised studies. The programme has shown positive effects on, for example, young people’s empowerment and preparedness for the transition to adult healthcare.
At the same time, adolescents with different disabilities have often been excluded from previous studies, and there is still limited knowledge about how evidence-based transition programmes can be adapted for this target group.
Purpose
The overall aim of the project is to explore the prerequisites for a transition programme for adolescents with disabilities and, through a co-creation process, adapt the STEPSTONES programme together with young people, family members, and healthcare professionals.
The goal is to develop an evidence-informed and practically feasible programme that strengthens young people’s participation and supports a safe transition from paediatric to adult healthcare.
How is the study conducted?
The project is carried out in two phases in collaboration with the Child and Adolescent Psychiatry services at Sahlgrenska University Hospital and Habilitation & Health Services in Region Stockholm.
Phase 1 – Mapping
In the first phase, the project explores the needs and challenges associated with the transition to adult healthcare.
Data collection includes:
- interviews with adolescents and young adults with disabilities
- interviews with parents and family members
- focus groups with healthcare professionals
The aim is to gain a deeper understanding of the target group’s experiences and needs.
Phase 2 – Co-creation
In the second phase, the adapted transition programme is developed in close collaboration with young people, family members, and healthcare professionals.
This takes place through workshops in which participants, together with the researchers:
- modify the programme content
- identify relevant outcome measures
- identify implementation challenges
- plan how the programme can be introduced into healthcare practice
Why is the project important?
The transition to adult healthcare is a critical period in life for young people with disabilities. When this transition does not work well, young people risk:
- losing contact with healthcare services
- missing important follow-up appointments
- experiencing poorer health
- feeling insecure within the healthcare system
By developing a person-centred transition programme, the project can contribute to:
- increased continuity of care
- strengthened participation for young people
- better support for families
- more equitable and person-centred healthcare
The project also helps bridge the gap between research and clinical practice by developing an intervention that is adapted to real-world care processes.