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dc.contributor.authorNguyen, L
dc.contributor.authorvan Oort, B
dc.contributor.authorDavis, H
dc.contributor.authorvan der Meulen, E
dc.contributor.authorDawe-McCord, C
dc.contributor.authorFranklin, A
dc.contributor.authorGorter, JW
dc.contributor.authorMorris, C
dc.contributor.authorKetelaar, M
dc.date.accessioned2022-11-21T09:11:25Z
dc.date.issued2022-11-17
dc.date.updated2022-11-18T18:16:48Z
dc.description.abstractBackground Involvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The purpose of this paper is to describe and reflect on different approaches between researchers and young partners by experience based on six research projects conducted in Canada, Netherlands, and United Kingdom. Methods From six exemplar research projects, at least one researcher and one young partner by experience were asked to collaboratively (1) describe the project; (2) summarise the values and practicalities of the project; and (3) reflect on their partnership. Thematic analysis was applied to the findings from these reflective exercises, which included meeting summaries, recordings, and notes. Results All projects shared similar values, including mutual respect between all team members. Young partners were offered a variety of opportunities and approaches to being involved, for example in recruiting participants, co-analysing or (co-)presenting results. Supports were provided to the teams in a variety of ways, including organizing accessible meetings and having dedicated facilitators. Regular and proactive communication was encouraged by using asynchronous modes of communication, establishing reference documents, and a personal approach by facilitators. Facilitators aimed to tailor the needs of all team members by continuously discussing their preferred roles in the project. While most projects did not offer formal research training, various learning and skill development opportunities were provided throughout, including presenting skills or advocacy training. Conclusion With this paper, we demonstrated the value of reflection, and we invite others to reflect on their partnerships and share their lessons learned. Our recommendations for involvement of young people in research are: (1) Remember that it is okay to not know what the partnership might look like and there is no single recipe of how to partner; (2) Take the time to invest in partnerships; (3) Provide ongoing opportunities to reflect on partnerships; (4) Consider how to balance the power dynamics; and (5) Consider how to incorporate diversity in the background of young partners in research.en_GB
dc.description.sponsorshipCanadian Institutes of Health Researchen_GB
dc.description.sponsorshipFNO, Amsterdam, the Netherlandsen_GB
dc.description.sponsorshipZonMWen_GB
dc.description.sponsorshipBig Lottery, UKen_GB
dc.description.sponsorshipBritish Academyen_GB
dc.description.sponsorshipCIHR-SCA-145104en_GB
dc.description.sponsorshipMontreal Children’s Hospital Foundationen_GB
dc.description.sponsorshipFaculty of Health Sciences, McMaster Universityen_GB
dc.description.sponsorshipNew Brunswick Health Research Foundationen_GB
dc.description.sponsorshipMcMaster Children’s Hospital Foundationen_GB
dc.description.sponsorshipHamilton Health Sciencesen_GB
dc.identifier.citationVol. 8, article 62en_GB
dc.identifier.doihttps://doi.org/10.1186/s40900-022-00400-7
dc.identifier.grantnumberTLS 170679en_GB
dc.identifier.grantnumber100 − 038en_GB
dc.identifier.urihttp://hdl.handle.net/10871/131818
dc.identifierORCID: 0000-0002-9916-507X (Morris, Christopher)
dc.identifierScopusID: 7401472396 (Morris, Christopher)
dc.language.isoenen_GB
dc.publisherBMCen_GB
dc.rights© The Author(s) 2022. Open Access. This 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/. The Creative Commons Public Domain Dedication waiver (http://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.en_GB
dc.subjectInvolvementen_GB
dc.subjectPartnershipen_GB
dc.subjectDisability researchen_GB
dc.subjectYoung peopleen_GB
dc.subjectAdolescents and young adultsen_GB
dc.subjectParticipatory researchen_GB
dc.subjectLived experienceen_GB
dc.subjectDecision-makingen_GB
dc.titleExploring the “how” in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdomen_GB
dc.typeArticleen_GB
dc.date.available2022-11-21T09:11:25Z
exeter.article-number62
dc.descriptionThis is the final version. Available on open access from BMC via the DOI in this recorden_GB
dc.descriptionAvailability of data and materials: All data generated or analysed during this study are included in this published article.en_GB
dc.identifier.eissn2056-7529
dc.identifier.journalResearch Involvement and Engagementen_GB
dc.relation.ispartofResearch Involvement and Engagement, 8(1)
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/en_GB
dcterms.dateAccepted2022-11-04
rioxxterms.versionVoRen_GB
rioxxterms.typeJournal Article/Reviewen_GB
refterms.dateFCD2022-11-21T09:05:04Z
refterms.versionFCDVoR
refterms.dateFOA2022-11-21T09:11:26Z
refterms.panelAen_GB
refterms.dateFirstOnline2022-11-17


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© The Author(s) 2022. Open Access. This 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/. The Creative Commons Public Domain Dedication waiver (http://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.
Except where otherwise noted, this item's licence is described as © The Author(s) 2022. Open Access. This 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/. The Creative Commons Public Domain Dedication waiver (http://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.