Building a culture of engagement at a research centre for childhood disability

Plain English summary More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for C...

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Autores principales:	Kinga Pozniak, Francine Buchanan, Andrea Cross, Jennifer Crowson, Barb Galuppi, Danijela Grahovac, Jan Willem Gorter, Oksana Hlyva, Marjolijn Ketelaar, Olaf Kraus de Camargo, Manda Krpan Mesic, Rachel Martens, Dayle McCauley, Linda Nguyen, Robert J. Palisano, Michelle Phoenix, Connie Putterman, Peter Rosenbaum, Jennifer Sprung, Sonya Strohm, Rachel Teplicky, Donna Thomson, Marilyn Wright
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Family engagement in research Childhood disability Organizational ethnography Collaborative auto-ethnography Medicine R Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/682ef8147f164d82b5f7baf6cfb37343
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spelling	oai:doaj.org-article:682ef8147f164d82b5f7baf6cfb373432021-11-08T10:45:29ZBuilding a culture of engagement at a research centre for childhood disability10.1186/s40900-021-00319-52056-7529https://doaj.org/article/682ef8147f164d82b5f7baf6cfb373432021-11-01T00:00:00Zhttps://doi.org/10.1186/s40900-021-00319-5https://doaj.org/toc/2056-7529Plain English summary More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.Kinga PozniakFrancine BuchananAndrea CrossJennifer CrowsonBarb GaluppiDanijela GrahovacJan Willem GorterOksana HlyvaMarjolijn KetelaarOlaf Kraus de CamargoManda Krpan MesicRachel MartensDayle McCauleyLinda NguyenRobert J. PalisanoMichelle PhoenixConnie PuttermanPeter RosenbaumJennifer SprungSonya StrohmRachel TeplickyDonna ThomsonMarilyn WrightBMCarticleFamily engagement in researchChildhood disabilityOrganizational ethnographyCollaborative auto-ethnographyMedicineRMedicine (General)R5-920ENResearch Involvement and Engagement, Vol 7, Iss 1, Pp 1-15 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Family engagement in research Childhood disability Organizational ethnography Collaborative auto-ethnography Medicine R Medicine (General) R5-920
spellingShingle	Family engagement in research Childhood disability Organizational ethnography Collaborative auto-ethnography Medicine R Medicine (General) R5-920 Kinga Pozniak Francine Buchanan Andrea Cross Jennifer Crowson Barb Galuppi Danijela Grahovac Jan Willem Gorter Oksana Hlyva Marjolijn Ketelaar Olaf Kraus de Camargo Manda Krpan Mesic Rachel Martens Dayle McCauley Linda Nguyen Robert J. Palisano Michelle Phoenix Connie Putterman Peter Rosenbaum Jennifer Sprung Sonya Strohm Rachel Teplicky Donna Thomson Marilyn Wright Building a culture of engagement at a research centre for childhood disability
description	Plain English summary More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.
format	article
author	Kinga Pozniak Francine Buchanan Andrea Cross Jennifer Crowson Barb Galuppi Danijela Grahovac Jan Willem Gorter Oksana Hlyva Marjolijn Ketelaar Olaf Kraus de Camargo Manda Krpan Mesic Rachel Martens Dayle McCauley Linda Nguyen Robert J. Palisano Michelle Phoenix Connie Putterman Peter Rosenbaum Jennifer Sprung Sonya Strohm Rachel Teplicky Donna Thomson Marilyn Wright
author_facet	Kinga Pozniak Francine Buchanan Andrea Cross Jennifer Crowson Barb Galuppi Danijela Grahovac Jan Willem Gorter Oksana Hlyva Marjolijn Ketelaar Olaf Kraus de Camargo Manda Krpan Mesic Rachel Martens Dayle McCauley Linda Nguyen Robert J. Palisano Michelle Phoenix Connie Putterman Peter Rosenbaum Jennifer Sprung Sonya Strohm Rachel Teplicky Donna Thomson Marilyn Wright
author_sort	Kinga Pozniak
title	Building a culture of engagement at a research centre for childhood disability
title_short	Building a culture of engagement at a research centre for childhood disability
title_full	Building a culture of engagement at a research centre for childhood disability
title_fullStr	Building a culture of engagement at a research centre for childhood disability
title_full_unstemmed	Building a culture of engagement at a research centre for childhood disability
title_sort	building a culture of engagement at a research centre for childhood disability
publisher	BMC
publishDate	2021
url	https://doaj.org/article/682ef8147f164d82b5f7baf6cfb37343
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Building a culture of engagement at a research centre for childhood disability

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