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Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study

BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTI...

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Autores principales: Melchior, Inge, van der Heijden, Anouk, Stoffers, Esther, Suntjens, Frits, Moser, Albine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8077136/
https://www.ncbi.nlm.nih.gov/pubmed/33405359
http://dx.doi.org/10.1111/hex.13186
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author Melchior, Inge
van der Heijden, Anouk
Stoffers, Esther
Suntjens, Frits
Moser, Albine
author_facet Melchior, Inge
van der Heijden, Anouk
Stoffers, Esther
Suntjens, Frits
Moser, Albine
author_sort Melchior, Inge
collection PubMed
description BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated. INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12‐18 months, (3) a community of practice, and (4) a qualitative evaluation. RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI. DISCUSSION: A relationship culture appears to be long‐lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks. CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship‐ and task‐oriented PPI cultures. PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.
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spelling pubmed-80771362021-04-29 Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study Melchior, Inge van der Heijden, Anouk Stoffers, Esther Suntjens, Frits Moser, Albine Health Expect Original Research Papers BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated. INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12‐18 months, (3) a community of practice, and (4) a qualitative evaluation. RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI. DISCUSSION: A relationship culture appears to be long‐lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks. CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship‐ and task‐oriented PPI cultures. PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects. John Wiley and Sons Inc. 2021-01-06 2021-04 /pmc/articles/PMC8077136/ /pubmed/33405359 http://dx.doi.org/10.1111/hex.13186 Text en © 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd. 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 Original Research Papers
Melchior, Inge
van der Heijden, Anouk
Stoffers, Esther
Suntjens, Frits
Moser, Albine
Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study
title Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study
title_full Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study
title_fullStr Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study
title_full_unstemmed Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study
title_short Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study
title_sort patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: a qualitative study
topic Original Research Papers
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8077136/
https://www.ncbi.nlm.nih.gov/pubmed/33405359
http://dx.doi.org/10.1111/hex.13186
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