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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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Detalles Bibliográficos
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
Descripción
Sumario: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.