Evidence map›Paper›PMID 41846499›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2026

Distributed Health Literacy Among People With Intellectual Disability, Their Supporters and Healthcare Professionals: A Scoping Review.

Maryann Barrington, Karen R Fisher, Ben Harris-Roxas, Julian N Trollor, Catherine Spooner, Julie M Christensen, Janelle Weise

Abstract readScoping Review
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 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

7 authors.

Maryann BarringtonNational Centre of Excellence in Intellectual Disability Health, UNSW Sydney, Sydney, Australia.ORCID 0000-0002-5666-0716
Karen R FisherSocial Research Policy Centre, UNSW Sydney, Sydney, Australia.ORCID 0000-0002-0828-6395
Ben Harris-RoxasSchool of Population Health, UNSW Sydney, Sydney, Australia.ORCID 0000-0003-1716-2009
Julian N TrollorNational Centre of Excellence in Intellectual Disability Health, UNSW Sydney, Sydney, Australia.ORCID 0000-0002-7685-2977
Catherine SpoonerInternational Centre for Future Health Systems, UNSW Sydney, Sydney, Australia.ORCID 0000-0002-6741-5644
Julie M ChristensenNational Centre of Excellence in Intellectual Disability Health, UNSW Sydney, Sydney, Australia.
Janelle WeiseFaculty of Medicine and Health, University of Sydney, Sydney, Australia.

Funding

National Health and Medical Research Council 2006240National Health and Medical Research Council GNT1123033
6 · The paper itself

Abstract

backgroundHealth literacy is associated with improved healthcare experiences and health outcomes and is influenced by the social context in which it occurs. People with intellectual disability face stark health inequalities, yet the health literacy concept is underexplored for this group. Little is known about how health literacy is co-constructed between people with intellectual disability, supporters and healthcare professionals.

objectiveThe aim is to understand the experiences of people with intellectual disability accessing, understanding, appraising and applying health information together with their supporters and healthcare professionals. SEARCH STRATEGY: This scoping review followed Joanna Briggs Institute guidelines. Articles were identified and retrieved from CINAHL, PsycINFO, PubMed and EMBASE. Articles were included if they were published between 2000 and the present and focussed on aspects of how people with intellectual disability accessed, understood, appraised or used information or the role that socio-environmental influences, including support networks and healthcare professionals, have in this process. DATA EXTRACTION AND SYNTHESIS: Two reviewers completed abstract and full-text screening, addressing any conflicts at each stage. Data were extracted and coded deductively, according to the integrated model of health literacy. MAIN

resultFollowing search and screening, 90 articles were included for review. Interpretation of the evidence suggests that health literacy is a relational process between people with intellectual disability, support networks and healthcare professionals. Each group experiences particular barriers and facilitators to this process and is impacted by its wider social and environmental contexts. There was limited evidence about how personal characteristics might shape health literacy, particularly intersectional experiences. DISCUSSION AND

conclusionsHealth literacy is a social practice, with roles and responsibilities shared among people and systems. Healthcare and disability sectors can facilitate health literacy by creating environments that support shared access and use of health information, as well as facilitate choice and decision-making. PATIENT OR PUBLIC CONTRIBUTION: Collaboration with people with intellectual disability in scoping reviews is an emerging area. We gained the perspectives and feedback of colleagues with lived experience of intellectual disability for the design of the review and interpretation of the evidence. This included meeting with a Lived Experience Reference Group of seven people with intellectual disability to discuss our process and findings and receive their guidance. Their contributions supported how we interpreted the findings and reported the review.

Indexed as

Health LiteracyHealth PersonnelIntellectual DisabilityHumansdecision‐makinghealth informationhealth literacyhealth promotionintellectual disability

Identifiers

PMID41846499
PMCPMC13080893

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.