Evidence map›Paper›PMID 41193932›Full record

ArticleOTJR : occupation, participation and health2026

Engagement to Identify Health Priorities of People With Intellectual and/or Developmental Disability.

Teal W Benevides, Hoangmai H Pham, May-Lynn Andresen, Madelyn R Bahr, Tim Corey, Joanne Nicholson, Kristen Faughnan, Jennifer E Jaremski, Carolyn Langer, Vincent Siasoco and 2 more

Abstract read
In one paragraph

Article in OTJR : occupation, participation and health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

12 authors.

Teal W BenevidesAugusta University, GA, USA.ORCID 0000-0003-1395-2628
Hoangmai H PhamInstitute for Exceptional Care, Washington, DC, USA.
May-Lynn AndresenInstitute for Exceptional Care, Washington, DC, USA.
Madelyn R BahrInstitute for Exceptional Care, Washington, DC, USA.
Tim CoreyColibri Facilitation, Seattle, WA, USA.
Joanne NicholsonBrandeis University, Waltham, MA, USA.ORCID 0000-0003-4470-378X
Kristen FaughnanBrandeis University, Waltham, MA, USA.
Jennifer E JaremskiAugusta University, GA, USA.ORCID 0000-0002-2968-6152
Carolyn LangerUMass Chan Medical School, Worcester, MA, USA.
Vincent SiasocoMontefiore Medical Center, Bronx, NY, USA.
Alexis Hernandez-HonsAllen-Cochran Enterprises Inc. (4347), Trinity, FL, USA.ORCID 0009-0006-2740-8788
Stephen M ShoreAdelphi University, Garden City, NY, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

People with lived experiences are often excluded from development of solutions and decision-making related to health research and policy. To describe and demonstrate how high-quality engagement supports partner and project outcomes. The ultimate project outcome was to identify health priorities desired by people with intellectual and/or developmental disability (IDD) and the people who support achieving those priorities, including caregivers, clinicians, and payers/regulators. This capacity-building project implemented and evaluated methods of engagement of IDD self-advocates, caregivers/partners, clinicians, payers/regulators, and researchers. Our reliance on a variety of engagement approaches, but particularly graphic illustration and other visual engagement, yielded productive conversations to advance areas of priority. Partners felt satisfied with engagement and continued to participate at multiple points throughout the 2-year project. We identified nine illustrated priority health outcomes useful for research, practice, and policy change. Our engagement and priority-setting approach resulted in findings that partners found compelling personally and professionally.

Indexed as

Developmental DisabilitiesHealth PrioritiesIntellectual DisabilityCapacity BuildingCaregiversHumansengagementgraphic illustrationintellectual and/or developmental disabilitypatient-centered outcomes research

Identifiers

PMID41193932
PMCPMC12988008

What OpenQuestion holds

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LicenceCC BY-NC
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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.