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BMJ quality & safety
Apr 24, 2024;33 (5): 328-339.

Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review.

Manjekah Dunn, Iva Strnadová, Jackie Leach Scully, Jennifer Hansen, Julie Loblinzk, Skie Sarfaraz, Chloe Molnar, Elizabeth Emma Palmer
Author Information
  1. Manjekah Dunn: Faculty of Medicine & Health, University of New South Wales, Sydney, New South Wales, Australia manjekah.dunn@unsw.edu.au. ORCID
  2. Iva Strnadová: School of Education, University of New South Wales, Sydney, New South Wales, Australia.
  3. Jackie Leach Scully: Disability Innovation Institute, University of New South Wales, Sydney, New South Wales, Australia.
  4. Jennifer Hansen: School of Education, University of New South Wales, Sydney, New South Wales, Australia.
  5. Julie Loblinzk: School of Education, University of New South Wales, Sydney, New South Wales, Australia.
  6. Skie Sarfaraz: Self Advocacy Sydney, Sydney, New South Wales, Australia.
  7. Chloe Molnar: Faculty of Medicine & Health, University of New South Wales, Sydney, New South Wales, Australia.
  8. Elizabeth Emma Palmer: Faculty of Medicine & Health, University of New South Wales, Sydney, New South Wales, Australia.
PMID: 38071590 DOI: 10.1136/bmjqs-2023-016113

Abstract

OBJECTIVE: To 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 RESULTS: Inductive 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.
RESULTS: Twenty-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).
CONCLUSIONS: Multiple 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.

Keywords

Decision making Healthcare quality improvement Patient-centred care Quality improvement Standards of care

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MeSH Term

Humans
Intellectual Disability
Informed Consent
Attitude of Health Personnel
Journal Article Systematic Review Research Support, Non-U.S. Gov't
Article has an altmetric score of 14

Word Cloud

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