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The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research

INTRODUCTION: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving bey...

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Autores principales: Chapman, Kelsey, Dixon, Angel, Cocks, Kevin, Ehrlich, Carolyn, Kendall, Elizabeth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10100520/
https://www.ncbi.nlm.nih.gov/pubmed/36369985
http://dx.doi.org/10.1111/1440-1630.12847
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author Chapman, Kelsey
Dixon, Angel
Cocks, Kevin
Ehrlich, Carolyn
Kendall, Elizabeth
author_facet Chapman, Kelsey
Dixon, Angel
Cocks, Kevin
Ehrlich, Carolyn
Kendall, Elizabeth
author_sort Chapman, Kelsey
collection PubMed
description INTRODUCTION: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research. METHODS: Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability. FINDINGS: Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice. CONCLUSION: The framework builds on inclusive research frameworks to a human rights‐based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability.
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spelling pubmed-101005202023-04-14 The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research Chapman, Kelsey Dixon, Angel Cocks, Kevin Ehrlich, Carolyn Kendall, Elizabeth Aust Occup Ther J Feature Articles INTRODUCTION: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research. METHODS: Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability. FINDINGS: Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice. CONCLUSION: The framework builds on inclusive research frameworks to a human rights‐based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability. John Wiley and Sons Inc. 2022-11-12 2022-12 /pmc/articles/PMC10100520/ /pubmed/36369985 http://dx.doi.org/10.1111/1440-1630.12847 Text en © 2022 The Authors. Australian Occupational Therapy Journal published by John Wiley & Sons Australia, Ltd on behalf of Occupational Therapy Australia. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Feature Articles
Chapman, Kelsey
Dixon, Angel
Cocks, Kevin
Ehrlich, Carolyn
Kendall, Elizabeth
The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
title The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
title_full The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
title_fullStr The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
title_full_unstemmed The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
title_short The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
title_sort dignity project framework: an extreme citizen science framework in occupational therapy and rehabilitation research
topic Feature Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10100520/
https://www.ncbi.nlm.nih.gov/pubmed/36369985
http://dx.doi.org/10.1111/1440-1630.12847
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