Supporting the transition of children and young people with a spinal cord injury from paediatric to adult healthcare services

Abstract

The seamless transition from the paediatric to the adult healthcare system, termed healthcare transition, is a significant and critical factor in fostering independence and improved health outcomes. Empirical evidence confirms that a structured healthcare transition process can improve outcomes for young people with chronic conditions. However, to date, healthcare transition research has not explored the impact of healthcare transition interventions for young people with paediatric onset spinal cord injuries. Based on lived experience, people with disabilities have knowledge and expertise to share with researchers. In healthcare research and intervention design, end-user involvement is paramount, as interventions designed in this way are better adapted to the specific needs of users and are often more innovative. Although studies report involving young people with chronic conditions in the development of healthcare transition interventions, few details have been provided as to how this was achieved. This study fills an important gap, as it details how a healthcare transition intervention was co-designed and developed with young people with paediatric onset spinal cord injuries and parents/caregivers. The aim of this study was to co-design, develop, implement, and evaluate a healthcare transition intervention to support young people with spinal cord injuries. This study has provided new insight into the healthcare transition needs of young people with spinal cord injuries. It is also the first study to co-design and develop a healthcare transition intervention in partnership with young people with spinal cord injuries and parents/caregivers. Although the sample was small, it has shown that it is possible to meaningfully engage and empower young people with spinal cord injuries and parents/caregivers in the co-design of a healthcare transition intervention. Using a participatory action research approach and co-design activities resulted in enhanced end-user acceptability of the developed healthcare transition intervention. The initial findings from this research also highlight that the 'SCI Healthcare Transition' website is a novel, innovative intervention that is feasible and acceptable. However, further evaluation of the website is needed to determine the impact on healthcare transition experiences and success.

Date of Award	2023
Original language	English