Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

This study explores the experiences of young people with spinal cord injuries (SCI) and their parents/caregivers as they transition from pediatric to adult healthcare services. The aim is to identify gaps in the transition process and co-design interventions to improve this transition. The research involved in-depth interviews with young people with SCI and their parents/caregivers to understand their experiences, needs, and recommendations for a smoother transition. The interviews focused on factors that influence the transition and suggestions for enhancing the transition experience. The study found that the transition process is often disjointed and that young people and their families need more information, support, and a coordinated handover from pediatric to adult healthcare providers. They also need a 'one-stop shop' for accessing transition information and ongoing support.

• 1
  Participants reported a lack of information about the transition process and expressed uncertainty and anxiety about moving from pediatric to adult healthcare services.
• 2
  The transition process was often abrupt and disjointed, with poor communication between pediatric and adult healthcare settings, leading to repeat tests and reiteration of medical history.
• 3
  Young people and parents/caregivers emphasized the need for increased communication, a streamlined handover process, joint transition appointments, and a portable medical summary to reduce stress and improve care.