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Codesigning patient experience measures for and with children and young people with intellectual disability: a study
Laurel Mimmo1,2, Susan Woolfenden2,3, Joanne Travaglia4
1Clinical Governance Unit, Sydney Children's Hospitals Network, Randwick, New South Wales, Australia laurel.mimmo@health.nsw.gov.au.
Insights
This study empowers young people with intellectual disability in healthcare by involving them in codesigning a tool to capture their experiences. This inclusive approach enhances patient-centered care and service improvement for this vulnerable group.
Area of Science:
- Healthcare service delivery
- Patient experience research
- Inclusive research methodologies
Background:
- Children and young people with intellectual disability are a vulnerable population often underrepresented in healthcare improvement projects.
- Healthcare services increasingly utilize codesign and coproduction to engage young people in service delivery enhancements.
Purpose of the Study:
- To codesign a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital settings.
- To ensure the full participation of young people with intellectual disability in the co-design process.
Main Methods:
- An inclusive study design incorporating two co-researchers with intellectual disability.
- Adaptation of the experience-based co-design methodology for this specific population.
- Development of a prototype tool for collecting patient experience data.
Main Results:
- The study successfully engaged young people with intellectual disability in the co-design process.
- A prototype tool for eliciting patient experience data was developed.
- Ethical approval was obtained from the Sydney Children's Hospitals Network Human Research Ethics Committee.
Conclusions:
- Inclusive codesign methodologies are effective in engaging vulnerable populations in healthcare research.
- Co-designing tools with young people with intellectual disability can improve the collection of patient experience data.
- This approach contributes to enhancing healthcare service delivery for individuals with intellectual disability.
Introduction:
Children and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements.
Methods And Analysis:
This study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital.
Ethics And Dissemination:
This study was granted ethical approval on 1 February 2021 by the Sydney Children's Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee.
