Supporting children and young people with a spinal cord injury

Project title

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

Project summary

The purpose of the study is to develop support for young people with a spinal cord injury (SCI) who are moving from paediatric to adult healthcare services. The specific objectives are to:

  1. Understand the experience of healthcare transition for young people with SCI and their parents/caregivers.
  2. Explore the current healthcare transition needs of young people with SCI.
  3. Co-design and develop healthcare transition support resources and tools for young people with SCI.
  4. Evaluate the acceptability and feasibility of the healthcare transition support resources and tools in supporting the transition process.

The study is targeted at young people (age 14- 25) with a SCI and their parents/caregivers. These young people will either be looking to transition in the next few years or will have transitioned in the last few years.

Researchers

Supervisor

What does participation in this research involve?

Participation includes an interview (or upon request a paired interview) that aims to explore the experiences, needs, and expectations regarding healthcare transition and the transfer to adult health services. The interview will be conducted via telephone or video-conference and will take approximately 30-45 minutes.

Following this, participants will take part in a co-design workshop to co-develop a healthcare transition support tool or resource. The workshop will be held in person at the Northcott offices/Western Sydney University or via video-conference and will run for 60-90 minutes.

After the tool or resource has been developed, participants will be asked to provide feedback on the developed healthcare transition support tool or resource. This will occur in a 60-minute online video-conference focus group.

Lastly, following a period of use, participants will evaluate the tool or resource. The evaluation will consist of a 15-minute interview conducted via telephone or video-conference.

More information

For further information, please contact Emily Bray

Human Research Ethics Committee approval number: H14029