Evidence map›Paper›PMID 36397131›Full record

ArticleResearch involvement and engagement2022

Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom.

Linda Nguyen, Bente van Oort, Hanae Davis, Eline van der Meulen, Claire Dawe-McCord, Anita Franklin, Jan Willem Gorter, Christopher Morris, Marjolijn Ketelaar

Abstract readLetter
In one paragraph

Article in Research involvement and engagement, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

13 citing papers in PubMed.

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  8. Review
  9. Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.Health expectations : an international journal of public participation in health care and health policy · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Linda NguyenSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
Bente van OortThe Netherlands Organisation for Health Research and Development, The Hague, The Netherlands.
Hanae DavisSibling Youth Advisory Council, Hamilton, ON, Canada.
Eline van der MeulenSupervisory board of Stichting JongPIT, Amsterdam, The Netherlands.
Claire Dawe-McCordCumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Anita FranklinSchool of Education and Sociology, University of Portsmouth, Portsmouth, UK.
Jan Willem GorterSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
Christopher MorrisPenCRU (Peninsula Childhood Disability Research Unit), University of Exeter Medical School, University of Exeter, Exeter, UK.
Marjolijn KetelaarUMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands. M.Ketelaar-2@umcutrecht.nl.

Funding

CIHR TLS 170679FNO Project Number 100-038
6 · The paper itself

Abstract

backgroundInvolvement 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.

methodsFrom 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.

resultsAll 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.

conclusionWith 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.

Indexed as

Adolescents and young adultsDecision-makingDisability researchInvolvementLived experienceParticipatory researchPartnershipYoung people

Identifiers

PMID36397131
PMCPMC9672637

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.