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Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health

BACKGROUND: In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experience...

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Autores principales: Hartling, Lisa, Elliott, Sarah A., Buckreus, Kelli, Leung, Julie, Scott, Shannon D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8186233/
https://www.ncbi.nlm.nih.gov/pubmed/34099069
http://dx.doi.org/10.1186/s40900-021-00280-3
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author Hartling, Lisa
Elliott, Sarah A.
Buckreus, Kelli
Leung, Julie
Scott, Shannon D.
author_facet Hartling, Lisa
Elliott, Sarah A.
Buckreus, Kelli
Leung, Julie
Scott, Shannon D.
author_sort Hartling, Lisa
collection PubMed
description BACKGROUND: In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experiences establishing the group, and results from parent evaluations. METHODS: We contacted 191 organizations to recruit parents and caregivers of children who wanted to contribute to child health research. Our initial goal was to recruit 8 to 10 parents who would meet regularly (approximately 8 times per year). We conducted an online baseline survey of members after the first two meetings to understand motivations for participating and early experiences. Sixteen months later we conducted another online survey to identify what was going well and areas for improvement. RESULTS: Twelve parents initially joined the group. The baseline survey (n = 9 complete) identified motivations for participation: wanting a patient/family voice in health research; personal experience accessing health system for child’s care; wanting to improve healthcare communications. Concerns about participation included: having sufficient time to attend meetings; whether contributions would be worthwhile; and uncertainty about how the group’s input would be used in practice. Parents identified aspects that were working well: opportunity to provide constructive feedback; diversity among parents involved; well-run and organized meetings (agenda and materials sent prior to meeting, skilled facilitation, adequate time for discussion). Items parents identified as not working well were: fluctuating attendance; not knowing others in the group; challenges if attending remotely. At follow-up, there were seven active members. The follow-up survey (n = 5 complete) identified positive feedback related to group dynamics (e.g., collegial, everyone participates) and organization of meetings. Suggestions for improvement included increasing membership, regular attendance, and providing adequate information/context to allow meaningful input. CONCLUSIONS: Our experience establishing a parent advisory group and evaluation of the group by parent members have yielded tremendous insights around involving parents and patient proxies in health research. The parent advisory group is a dynamic entity requiring ongoing communication between researchers and members. Effective means of evaluating engagement is essential to ensure it is meaningful. Dedicated time, funding and resources are required for success. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-021-00280-3.
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spelling pubmed-81862332021-06-10 Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health Hartling, Lisa Elliott, Sarah A. Buckreus, Kelli Leung, Julie Scott, Shannon D. Res Involv Engagem Research Article BACKGROUND: In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experiences establishing the group, and results from parent evaluations. METHODS: We contacted 191 organizations to recruit parents and caregivers of children who wanted to contribute to child health research. Our initial goal was to recruit 8 to 10 parents who would meet regularly (approximately 8 times per year). We conducted an online baseline survey of members after the first two meetings to understand motivations for participating and early experiences. Sixteen months later we conducted another online survey to identify what was going well and areas for improvement. RESULTS: Twelve parents initially joined the group. The baseline survey (n = 9 complete) identified motivations for participation: wanting a patient/family voice in health research; personal experience accessing health system for child’s care; wanting to improve healthcare communications. Concerns about participation included: having sufficient time to attend meetings; whether contributions would be worthwhile; and uncertainty about how the group’s input would be used in practice. Parents identified aspects that were working well: opportunity to provide constructive feedback; diversity among parents involved; well-run and organized meetings (agenda and materials sent prior to meeting, skilled facilitation, adequate time for discussion). Items parents identified as not working well were: fluctuating attendance; not knowing others in the group; challenges if attending remotely. At follow-up, there were seven active members. The follow-up survey (n = 5 complete) identified positive feedback related to group dynamics (e.g., collegial, everyone participates) and organization of meetings. Suggestions for improvement included increasing membership, regular attendance, and providing adequate information/context to allow meaningful input. CONCLUSIONS: Our experience establishing a parent advisory group and evaluation of the group by parent members have yielded tremendous insights around involving parents and patient proxies in health research. The parent advisory group is a dynamic entity requiring ongoing communication between researchers and members. Effective means of evaluating engagement is essential to ensure it is meaningful. Dedicated time, funding and resources are required for success. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-021-00280-3. BioMed Central 2021-06-07 /pmc/articles/PMC8186233/ /pubmed/34099069 http://dx.doi.org/10.1186/s40900-021-00280-3 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research Article
Hartling, Lisa
Elliott, Sarah A.
Buckreus, Kelli
Leung, Julie
Scott, Shannon D.
Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
title Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
title_full Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
title_fullStr Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
title_full_unstemmed Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
title_short Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
title_sort development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8186233/
https://www.ncbi.nlm.nih.gov/pubmed/34099069
http://dx.doi.org/10.1186/s40900-021-00280-3
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