Evidence map›Paper›PMID 42477827›Full record

ArticleResearch involvement and engagement2026

Understanding strengths, weaknesses, opportunities, and threats to organizational-level family engagement in two childhood-onset disability research organizations.

Samantha K Micsinszki, Andrea Cross, Alice Kelen Soper, Donna Thomson, Connie Putterman, Rachel Martens, Dayle McCauley, Jennifer Zwicker, James N Reynolds, Jan Willem Gorter and 1 more

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Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

11 authors.

Samantha K MicsinszkiSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada. micsinss@mcmaster.ca.ORCID https://orcid.org/0000-0002-1357-1158
Andrea CrossCanChild Centre for Childhood-onset Disability Research, McMaster University, Hamilton, ON, Canada.
Alice Kelen SoperSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
Donna ThomsonCanChild Centre for Childhood-onset Disability Research, McMaster University, Hamilton, ON, Canada.
Connie PuttermanCanChild Centre for Childhood-onset Disability Research, McMaster University, Hamilton, ON, Canada.
Rachel MartensCanChild Centre for Childhood-onset Disability Research, McMaster University, Hamilton, ON, Canada.
Dayle McCauleyCanChild Centre for Childhood-onset Disability Research, McMaster University, Hamilton, ON, Canada.
Jennifer ZwickerAzrieli Accelerator Program, University of Calgary, Calgary, AB, Canada.
James N ReynoldsKids Brain Health Network, Burnaby, BC, Canada.
Jan Willem GorterCanChild Centre for Childhood-onset Disability Research, McMaster University, Hamilton, ON, Canada.
Michelle PhoenixSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.

Funding

CIHR 170668
6 · The paper itself

Abstract

objectivesFamily engagement at a research project-level is well-studied in childhood-onset disability research, yet organizational-level family engagement (e.g., advisory boards, policy review, mentorship) remains less understood. The objective of this organizational research study was therefore to describe (1) how families are currently engaged at two childhood-onset disability research organizations and (2) the strengths, weaknesses, opportunities, and threats (SWOT) to organizational-level family engagement.

methodsA qualitative descriptive approach was used, including online surveys, focus groups, and interviews to collect data from organizational leaders, families, researchers, and trainees from two childhood-onset disability research organizations. Structured deductive content analysis using a SWOT matrix was employed to categorize and present the data.

resultsStrengths included each organization's ability to value and evolve engagement practices and dedicate organizational resources to ensure families felt represented and supported. Simultaneously, limited training, financial support, and formal structures to embed families within the organization were noted as weaknesses. Across both organizations, opportunities to increase infrastructure and training were described. Despite organizational efforts, families are not always seen as part of the academic community, which pose threats to meaningfully embedding families at an organizational level.

conclusionsFindings highlight the value that both organizations place on family engagement, where families have been embedded within organizational processes and structures. Several strengths within the organizations were apparent and were matched with need for greater infrastructure, engagement support, and representation of diverse families. Opportunities described included further training and embedding families across the organization. We anticipate that without broader changes in academia, challenges to organizational engagement of people with lived experience will continue. Organizations such as those presented in this paper can support organizational-level family engagement through continued training, sharing current practices, and developing policies and practices other organizations may adopt.

Indexed as

Childhood disabilityFamily engagementNeurodevelopmental disabilityOrganizational-level engagementPatient-oriented researchQualitative descriptionSWOT analysis

Identifiers

PMID42477827
PMCPMC13386723

What Socratic holds

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LicenceCC BY-NC-ND
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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 Socratic graph.