JMIR Publications

ABSTRACT

Background:

Successful transition from paediatric to adult healthcare settings supports long term health management and better overall outcomes in all domains. Yet young people with spinal cord injuries (SCI) continue to report challenges and unmet needs in the transition process. Including end users in healthcare research and intervention design is paramount as interventions designed in this way better meet their specific needs and are often more innovative. Although studies have reported involving young people with chronic conditions in the development of healthcare transition (HCT) interventions, few details have been provided as to how this was achieved.

Objective:

This study outlines the co-design and development of a HCT intervention to support young people with SCI.

Methods:

Using participatory methods this qualitative study reports the co-design of a HCT intervention to support young people with SCI and parents/caregivers. In total, two co-design workshops were conducted; one with young people with SCI and one with parents/caregivers. Themes were defined through a hybrid deductive and inductive qualitative content analysis process that was informed by the Care Transitions Framework and guided the development of the HCT intervention. Following the creation of a prototype intervention, young people with SCI, parents/caregivers, and key paediatric SCI stakeholders, provided feedback on the intervention content and design in focus groups.

Results:

Four young people and four parents/caregivers participated in the co-design workshops. Key recommendations for the HCT intervention were that participants wanted a ‘one stop shop’ for all their transition information needs and an editable portable medical summary to take with them to appointments. Based on the analysis of participants’ recommendations from the workshops, it was determined that a website would be an appropriate hosting platform for the interventions. Focus group feedback on the design and content of the prototype website was extremely positive with minor recommendations for improvement.

Conclusions:

This is the first study to co-design and develop a HCT intervention in partnership with young people with SCI and their parents/caregivers. Although the study sample was small, it has shown that it is possible to meaningfully engage young people with SCI and parents/caregivers in the co-design of a HCT intervention. Clinical Trial: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000500853