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Reflective insights from developing a palliative care children and young people’s advisory group

BACKGROUND: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is be...

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Autores principales: Roach, Anna, Braybrook, Debbie, Marshall, Steve
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7975856/
https://www.ncbi.nlm.nih.gov/pubmed/33435853
http://dx.doi.org/10.1177/0269216320976035
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author Roach, Anna
Braybrook, Debbie
Marshall, Steve
author_facet Roach, Anna
Braybrook, Debbie
Marshall, Steve
author_sort Roach, Anna
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description BACKGROUND: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. AIM: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. FINDINGS: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. CONCLUSION: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.
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spelling pubmed-79758562021-03-31 Reflective insights from developing a palliative care children and young people’s advisory group Roach, Anna Braybrook, Debbie Marshall, Steve Palliat Med Short Report BACKGROUND: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. AIM: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. FINDINGS: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. CONCLUSION: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research. SAGE Publications 2021-01-12 2021-03 /pmc/articles/PMC7975856/ /pubmed/33435853 http://dx.doi.org/10.1177/0269216320976035 Text en © The Author(s) 2021 http://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Short Report
Roach, Anna
Braybrook, Debbie
Marshall, Steve
Reflective insights from developing a palliative care children and young people’s advisory group
title Reflective insights from developing a palliative care children and young people’s advisory group
title_full Reflective insights from developing a palliative care children and young people’s advisory group
title_fullStr Reflective insights from developing a palliative care children and young people’s advisory group
title_full_unstemmed Reflective insights from developing a palliative care children and young people’s advisory group
title_short Reflective insights from developing a palliative care children and young people’s advisory group
title_sort reflective insights from developing a palliative care children and young people’s advisory group
topic Short Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7975856/
https://www.ncbi.nlm.nih.gov/pubmed/33435853
http://dx.doi.org/10.1177/0269216320976035
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