Supporting the Transition of Children and Young People with a Spinal Cord Injury from Paediatric to Adult Healthcare Services

Participatory action research - over the course of a 12–18 month period, young people with a paediatric-onset spinal cord injury and parents of young people with a paediatric-onset spinal cord injury will be asked to 1) Share their experience with the transition from the paediatric to adult healthcare settings. This will include a 60 minute individual interview in which participants will discuss the needs, gaps, weaknesses and opportunities relating to healthcare transition for young people with spinal cord injury. 2) Co-design a healthcare transition support intervention. Once all interviews have been completed, interviewed participants will be invited to collaborate in a 90 minute group co-design workshop; one for young people and one for parents/caregivers. The workshops will have two phases, the first being to analyse the data from the interviews and the second to co-design the healthcare transition support intervention. The first phase of the workshop will require participants to review samples of unidentifiable excerpts of interviews and initial codes/categories generated by the researchers and decide on their authenticity. Once in agreement on codes/categories, working together researchers and participants (co-researchers) will group codes/categories into themes. In the co-design phase young people's healthcare transition needs and recommendations for the development of the healthcare transition support intervention will be explored. The researcher will use the future workshop method to facilitate discussion and generation of ideas for the development of the healthcare transition support intervention and participants will then work together to brainstorm designs. The future workshop method guides participants through three phases: a critique phase, a fantasy phase and an implementation phase. The aim of the critique phase will be to review the themes identified in the data analysis phase to identify deficits or challenges related to healthcare transition experienced by young people with spinal cord injures. In the fantasy phase, the participants will be given creative freedom to generate utopian ideas about the best possible way to mitigate the issues. In the third phase, the participants will transform the utopian ideas into a design for a practical and realisable healthcare transition support intervention. 3) Refine the draft healthcare transition support intervention. The researcher will take the designs developed in the workshop and within 6 months of the workshops completion turn them into a tangible healthcare transition support intervention. Following the development of a draft healthcare transition support intervention, young people with spinal cord injuries and their parents/caregivers from part 1 and 2 will be invited to participate in a 60 minute focus group to provide their feedback, further develop and refine the draft healthcare transition support intervention. 4) Feedback. Within 2 months of the focus groups completion the researcher will refine the healthcare transition support intervention and send the final HCT intervention to participants involved in parts 1, 2 and 3 as well as relevant stakeholders. Participants will be asked to review the healthcare transition support intervention and will be invited to participate in a brief 15 minute individual interview to provide feedback on the acceptability and feasibility of the final healthcare transition support intervention.