Evidence map›Paper›PMID 39187898›Full record

ArticleResearch involvement and engagement2024

Facilitating choice when engaging young people with disabilities: reflections from co-researcher training.

Emma Nicholson, Laurel Mimmo, Lauren Christophers, Maria Elena Costa Sa, Trish MacKeogh

Abstract readLetter
In one paragraph

Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

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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

2 citing papers in PubMed.

  1. Article
  2. Co-Producing a Patient Reported Experience Measure (PREM) With and for People With Intellectual Disability.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
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

5 authors.

Emma NicholsonSchool of Psychology, Faculty of Health and Science, Dublin City University, Glasnevin Campus, Dublin 9, Ireland. emma.nicholson@dcu.ie.
Laurel MimmoSydney Children's Hospital Network, High St, Randwick, NSW, 2031, Australia.
Lauren ChristophersUCD School of Medicine, University College Dublin, Belfield, Dublin 4, Ireland.
Maria Elena Costa SaIrish Network Against Racism, 28 North Great George's Street, Dublin 1, Ireland.
Trish MacKeoghCentral Remedial Clinic, Vernon Ave, Clontarf East, Dublin, D03 R973, Ireland.

Funding

Irish Research Council New Foundations Scheme
6 · The paper itself

Abstract

backgroundA collaborative approach is critical in inclusive research and should incorporate taking time to build relationships with co-researchers based on trust and shared understanding. Involvement can often be seen as tokenistic and in order to avoid this, it is important to provide opportunities for people to exercise choice throughout the research process. MAIN BODY: The current paper outlines learnings from a co-researcher training process for young people with disabilities to identify the ways in which meaningful choice can be facilitated with this group. While conducting training of co-researchers in topics such as research methods, we were continuously led by the group with regards to the directions that the sessions took and promoted problem solving with the group to accommodate the unique needs of all members. The overall aim of a wider project was to develop research capacity in a group of young people with disabilities through co-researcher training and this paper will report on learnings from this work with regards to how we sought to provide opportunities for the co-researchers to exercise choice within research projects. Feedback from the group of young people highlighted the variety of needs and expectations that must be accommodated in such a process and therefore, allowing them to dictate the extent and manner of their engagement is key. Young people with disabilities are a heterogeneous group and therefore, some methodologies and ways of working required adaptation in order to facilitate meaningful choice and engagement for all.

conclusionProviding meaningful opportunities for demonstrating their choices, in relation to elements of research projects, is a critical component of facilitating a rights-based approach when conducting co-research and requires researchers to cede some level of control over the research process to co-researchers. This can be difficult to achieve in practice and researchers must continuously reflect on their own practice and be willing to change and adapt throughout the process.

Indexed as

ChoiceInclusive researchPatient and public involvementYoung people; disabilities

Identifiers

PMID39187898
PMCPMC11348645

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.