{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["11(12)"],"submitter":["Mimmo L"],"pubmed_abstract":["<h4>Introduction</h4>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.<h4>Methods and analysis</h4>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.<h4>Ethics and dissemination</h4>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."],"journal":["BMJ open"],"pagination":["e050973"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC8650477"],"repository":["biostudies-literature"],"pubmed_title":["Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol."],"pmcid":["PMC8650477"],"pubmed_authors":["Mimmo L","van Hoek MAD","Harrison R","Woolfenden S","Phillips MTAK","Travaglia J","Strnadova I"],"additional_accession":[]},"is_claimable":false,"name":"Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.","description":"<h4>Introduction</h4>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.<h4>Methods and analysis</h4>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.<h4>Ethics and dissemination</h4>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.","dates":{"release":"2021-01-01T00:00:00Z","publication":"2021 Dec","modification":"2024-02-15T14:39:26.924Z","creation":"2022-02-11T13:56:44.179Z"},"accession":"S-EPMC8650477","cross_references":{"pubmed":["34872999"],"doi":["10.1136/bmjopen-2021-050973"]}}