Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

<h4>Background</h4>There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as be...

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Autores principales:	Alison Rouncefield-Swales, Jane Harris, Bernie Carter, Lucy Bray, Toni Bewley, Rachael Martin
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/da68bf794370468783ee5d9093eca649
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spelling	oai:doaj.org-article:da68bf794370468783ee5d9093eca6492021-12-02T20:07:11ZChildren and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.1932-620310.1371/journal.pone.0252774https://doaj.org/article/da68bf794370468783ee5d9093eca6492021-01-01T00:00:00Zhttps://doi.org/10.1371/journal.pone.0252774https://doaj.org/toc/1932-6203<h4>Background</h4>There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research.<h4>Methods</h4>Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made.<h4>Main findings</h4>A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited.<h4>Conclusions</h4>Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.Alison Rouncefield-SwalesJane HarrisBernie CarterLucy BrayToni BewleyRachael MartinPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 16, Iss 6, p e0252774 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Alison Rouncefield-Swales Jane Harris Bernie Carter Lucy Bray Toni Bewley Rachael Martin Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
description	<h4>Background</h4>There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research.<h4>Methods</h4>Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made.<h4>Main findings</h4>A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited.<h4>Conclusions</h4>Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.
format	article
author	Alison Rouncefield-Swales Jane Harris Bernie Carter Lucy Bray Toni Bewley Rachael Martin
author_facet	Alison Rouncefield-Swales Jane Harris Bernie Carter Lucy Bray Toni Bewley Rachael Martin
author_sort	Alison Rouncefield-Swales
title	Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
title_short	Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
title_full	Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
title_fullStr	Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
title_full_unstemmed	Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
title_sort	children and young people's contributions to public involvement and engagement activities in health-related research: a scoping review.
publisher	Public Library of Science (PLoS)
publishDate	2021
url	https://doaj.org/article/da68bf794370468783ee5d9093eca649
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Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

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