Evidence map›Paper›PMID 42638146›Full record

ArticleResearch involvement and engagement2026

Building capacity for leadership in family engagement in neurodevelopmental disability and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy.

Alice K Soper, Samantha Micsinszki, Sarah Ali, Donna Thomson, Connie Putterman, Rachel Martens, Dayle McCauley, Michelle Phoenix, Jan Willem Gorter, Andrea Cross

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

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 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

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

2 citing papers in PubMed.

  1. Article
  2. 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

10 authors.

Alice K SoperCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada. sopera@mcmaster.ca.
Samantha MicsinszkiCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Sarah AliCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Donna ThomsonCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Connie PuttermanCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Rachel MartensCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Dayle McCauleyCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Michelle PhoenixCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Jan Willem GorterCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.
Andrea CrossCanChild Centre for Childhood-Onset Disability Research, McMaster University, Hamilton, Canada.

Funding

CIHR 170668
6 · The paper itself

Abstract

backgroundThe Family Engagement in Research Leadership Academy is a 10-week (30 h), online McMaster University Certificate of Completion course for researchers and family members championing family engagement in neurodevelopmental disability and child health research. The Leadership Academy consists of weekly 2-hour online synchronous sessions, small group mentorship, an individual Leadership Learning Plan, and a 3-minute 'pitch' presentation about a proposed project or personal vision for family engagement leadership. Throughout the Leadership Academy, learners build knowledge in five core competencies of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship) and the skills to apply these competencies at organizational and community levels. The primary aim of this qualitative study was to identify learners' perceptions of the Leadership Academy, and to explore how they were applying family engagement leadership at organizational or community levels.

methodsTen out of 21 learners of the second and third Leadership Academy cohorts (2022-2023) agreed to participate in this study. We conducted semi-structured interviews after completing each course cohort. We analyzed qualitative data inductively using thematic analysis.

resultsThemes were generated related to learners' perceptions of the course and satisfaction: diverse means of learning; sense of community; and positive and supportive learning environment. Learners also reported that they were planning to or were actively applying course learnings to their leadership roles and career development. Learners indicated a desire to stay connected and continue to collaborate after the course.

conclusionsThe Leadership Academy is a learning experience that has potential to build capacity for family engagement in neurodevelopmental disability and child health research at organization and community levels by training champions in family engagement leadership core competencies and practices and creating a network of leaders. CLINICAL TRIAL NUMBER: Not applicable.

Indexed as

Child health researchFamily engagement in researchFamily membersLeadership AcademyNeurodevelopmental disabilityOnline educationPatient-oriented researchQualitative researchResearchers

Identifiers

PMID42638146
PMCPMC13501760

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.