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Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition

INTRODUCTION: Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in‐depth underst...

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Autores principales: van Schelven, Femke, Boeije, Hennie, Rademakers, Jany
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/PMC8957727/
https://www.ncbi.nlm.nih.gov/pubmed/34964225
http://dx.doi.org/10.1111/hex.13418
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author van Schelven, Femke
Boeije, Hennie
Rademakers, Jany
author_facet van Schelven, Femke
Boeije, Hennie
Rademakers, Jany
author_sort van Schelven, Femke
collection PubMed
description INTRODUCTION: Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in‐depth understanding of researchers’ and YPCC's perspectives on meaningful impact. METHODS: We conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., ‘YPCC acquire new knowledge and skills’) based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact. RESULTS: Four distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC's rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors. CONCLUSION: The results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact. PATIENT OR PUBLIC CONTRIBUTION: An adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC.
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spelling pubmed-89577272022-04-01 Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition van Schelven, Femke Boeije, Hennie Rademakers, Jany Health Expect Regular Issue Papers INTRODUCTION: Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in‐depth understanding of researchers’ and YPCC's perspectives on meaningful impact. METHODS: We conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., ‘YPCC acquire new knowledge and skills’) based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact. RESULTS: Four distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC's rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors. CONCLUSION: The results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact. PATIENT OR PUBLIC CONTRIBUTION: An adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC. John Wiley and Sons Inc. 2021-12-28 2022-04 /pmc/articles/PMC8957727/ /pubmed/34964225 http://dx.doi.org/10.1111/hex.13418 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 Regular Issue Papers
van Schelven, Femke
Boeije, Hennie
Rademakers, Jany
Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition
title Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition
title_full Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition
title_fullStr Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition
title_full_unstemmed Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition
title_short Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition
title_sort evaluating meaningful impact of patient and public involvement: a q methodology study among researchers and young people with a chronic condition
topic Regular Issue Papers
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8957727/
https://www.ncbi.nlm.nih.gov/pubmed/34964225
http://dx.doi.org/10.1111/hex.13418
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