SynthesisBMJ quality & safety2024
Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review.
Synthesis in BMJ quality & safety, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 38 citations in OpenAlex.
- Hysterectomy in women with disabilities: a systematic review.Epidemiologic reviews · 2026Pooled it
- Improving School Vaccinations for Adolescents With Intellectual and Developmental Disabilities: A Person-Centred Approach.Journal of advanced nursing · 2026Review
- Ethical Complexities and Concerns Surrounding Magnetic Resonance Imaging and the Open-Access Scientific Framework in Autism Research.Autism in adulthood · 2026Article
- Holistic management of epilepsy in adults with intellectual development disorders.Epileptic disorders : international epilepsy journal with videotape · 2026Article
- Article
- Supported Decision-Making Inventory: Psychometric Validation of the Catalan and Spanish Versions.Journal of applied research in intellectual disabilities : JARID · 2026Article
- Does Disability Bias Exist in Pediatric Orthopaedic Surgery?Journal of the Pediatric Orthopaedic Society of North America · 2026Article
- "It was up to me to be curious": perceptions and experiences of students with intellectual disability on genetics and health education.European journal of human genetics : EJHG · 2026Article
- 'Give People More Time and Take the Time to Explain Things Properly': Cervical Screening Experiences of People With Intellectual Disability.Journal of applied research in intellectual disabilities : JARID · 2026Article
- A Rapid Mapping Review of Medication Burden in Adults with an Intellectual Disability: What We Know and What We Do Not Know.Drug, healthcare and patient safety · 2026Review
- Shared decision-making in Cervical Cancer Care at Tikur Anbessa Specialized Hospital, Addis Ababa, Ethiopia: A mixed-methods study.PloS one · 2026Article
- Navigating care together: developing a collaborative checklist to improve care for children with intellectual disabilities.Research involvement and engagement · 2025Article
- Using a Technology Acceptance Model to Explore the Intention to Use Digital Health Technologies Among People With Disabilities: Cross-Sectional Survey Study.Journal of medical Internet research · 2025Article
- Health From the Perspective of Adolescents With Intellectual Disabilities-Report From Poland.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Exploring the experience of communication in healthcare settings with parents of children with a rare genetic condition: "It's the more negative ones that you remember".Journal of genetic counseling · 2025Article
- Valid consent in the acute hospital setting: perspectives of nursing and medical professionals from a survey-based study.Irish journal of medical science · 2025Article
- Addressing Stigma-Related Health Disparities for Autistic Individuals Through Cultural Competemility: Insights from Research and Lived Experience.Current psychiatry reports · 2024Review
- Working together with people with intellectual disability to make a difference: a protocol for a mixed-method co-production study to address inequities in cervical screening participation.Frontiers in public health · 2024Article
- Principles for Service Delivery: Best Practices for Cervical Screening for Women with Disabilities.International journal of women's health · 2024Review
- The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability.Frontiers in psychiatry · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible. DATA SOURCES: Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals. ELIGIBILITY CRITERIA: Peer-reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability. SYNTHESIS OF
resultsInductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co-researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created.
resultsTwenty-three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed-methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals' attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person-centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3).
conclusionsMultiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals' attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability. PROSPERO REGISTRATION: CRD42021290548.
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Registered trials
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.