STEPP Project

Young people with life-limiting illness, and their families, face many challenges and issues surrounding the transition, or move, from children’s to adult care services. This transition sees a shift in responsibilities around the management of the illness from the parent to the young adult themselves and they face many difficulties during this time.

The STEPP Project (Supporting health transitions for young people with life-limiting conditions: researching evidence of positive practice) was set up to identify these challenges and find practices that will help ease the burden of transition. The research was conducted by The Transition Partnership, a collaboration between Together for Short Lives, Hospice UK and the National Council for Palliative Care, working alongside a team of academic researchers at the University of York. The Big Lottery Fund provided the funding for this research.

Evidence and findings

Evidence shows transition increases the risk of deterioration in health and loss of contact with health services. The project involved interviews with young adults, parents and health professionals to gauge their real life experiences of what moving to an adult care service involved, from the different perspectives. 

STEPP gave a rare insight into the views and experiences of young adults themselves and shows clearly that small changes in practice can make a big difference to their day-to-day life.  For example, many young adults prefer their parents' presence when receiving information from a healthcare professional but, this is not common practice in an adult ward.

Key findings from the research related to:

  • Who is a young adult and how are young adults with life-limiting conditions different from their peers?
  • Young adults and their parents' involvement.
  • Early days in the adult clinic.
  • Staying on an adult ward.
  • Helping young adults deal with uncertainty.
  • Conversations around end of life.
  • Developing partnerships with palliative care services.
  • When a young adult dies – bereavement support for parents.

Resources

Two resources to support best practice were developed from the findings of the study: 

Together we hope these publications will be useful for all professionals working with young adult patients with significant, and potentially life-limiting, conditions and those with responsibility for supporting the transition from paediatric to adult care.

You can find out more about the research by contacting the Social Policy Research Unit at the University of York. You can also order hard copies of the report from Together for Short Lives.

What does hospice care mean to you?