Related Experiment Video
Updated: Oct 11, 2025
Measuring the Functional Abilities of Children Aged 3-6 Years Old with Observational Methods and Computer Tools
Published on: June 20, 2020
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.
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.
