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Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol

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 an...

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Autores principales: Mimmo, Laurel, Woolfenden, Susan, Travaglia, Joanne, Strnadová, Iva, Phillips, Maya Tokutake and Karen, van Hoek, Matthew and Debbie, Harrison, Reema
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8650477/
https://www.ncbi.nlm.nih.gov/pubmed/34872999
http://dx.doi.org/10.1136/bmjopen-2021-050973
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author Mimmo, Laurel
Woolfenden, Susan
Travaglia, Joanne
Strnadová, Iva
Phillips, Maya Tokutake and Karen
van Hoek, Matthew and Debbie
Harrison, Reema
author_facet Mimmo, Laurel
Woolfenden, Susan
Travaglia, Joanne
Strnadová, Iva
Phillips, Maya Tokutake and Karen
van Hoek, Matthew and Debbie
Harrison, Reema
author_sort Mimmo, Laurel
collection PubMed
description 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.
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spelling pubmed-86504772021-12-22 Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol Mimmo, Laurel Woolfenden, Susan Travaglia, Joanne Strnadová, Iva Phillips, Maya Tokutake and Karen van Hoek, Matthew and Debbie Harrison, Reema BMJ Open Health Services Research 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. BMJ Publishing Group 2021-12-06 /pmc/articles/PMC8650477/ /pubmed/34872999 http://dx.doi.org/10.1136/bmjopen-2021-050973 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Health Services Research
Mimmo, Laurel
Woolfenden, Susan
Travaglia, Joanne
Strnadová, Iva
Phillips, Maya Tokutake and Karen
van Hoek, Matthew and Debbie
Harrison, Reema
Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
title Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
title_full Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
title_fullStr Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
title_full_unstemmed Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
title_short Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
title_sort codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol
topic Health Services Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8650477/
https://www.ncbi.nlm.nih.gov/pubmed/34872999
http://dx.doi.org/10.1136/bmjopen-2021-050973
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