Cited by 244Down syndrome and intellectual disability researchInclusion and Disability in Education and SportDisability Rights and Representation

The DOI matches its Crossref record; 83 of the 83 references it cites were found in a registry or an index; none of the 127 sources its claims cite is checked for support yet.

Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Open access
Doherty, Alison Jayne, Atherton, Helen, Boland, Paul, Hastings, Richard, Hives, Lucy, Hood, Kerry, James-Jenkinson, Lynn, Leavey, Ralph, Randell, Elizabeth, Reed, Janet, Taggart, Laurence, Wilson, Neil, Chauhan, Umesh·2020·BJGP Open

Abstract

Background: Globally, people with intellectual disabilities and/or autism experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower than the general population, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy, and practice. Aim: To investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism, or both, and/or their carers, to accessing and utilising primary health care for their physical and mental health needs. Design & setting: An integrative review was undertaken, which used systematic review methodology. Method: Electronic databases MEDLINE, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of the studies. Results: Sixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The main themes were: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes. Conclusion: Adolescents and adults with intellectual disabilities and/or autism experience several barriers to accessing and utilising primary health care. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary health care.

Overview

AI snapshot

Written from the paper’s full text.

TL;DR

This integrative review synthesised 63 international studies on barriers and facilitators to primary health care for adolescents and adults with intellectual disabilities and/or autism, identifying six themes: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. It reports that barriers and facilitators often oppose each other within themes, underpinned by needs for greater care, dignity, respect, collaborative relationships, and reasonable adjustments.

Key findings

  • Sixty-three studies met eligibility: 53 qualitative, 5 mixed-methods, 4 quantitative, and 1 randomised controlled trial; most were from the UK (n = 33), US (n = 13), and Australia (n = 8); 49 explored intellectual disabilities, 13 explored autism, and 1 explored both.
  • Six main themes emerged: training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All were underpinned by the need for greater care, dignity, respect, collaborative relationships, and reasonable adjustments.
  • Opposing barriers and facilitators were identified within each theme; examples include lack of specialist training/knowledge and poor communication versus training, accessible information, continuity of professional, dignity/respect, and involvement in decisions.
  • Quality appraisal rated 46 of 63 studies (73%) as high quality, 2 as good quality, 7 as satisfactory, poor, or very poor, and 8 were not rated; none were excluded from the review.

Methods

  • Integrative review using systematic review methodology, reported per PRISMA 2009; searched Ovid MEDLINE, Embase, CINAHL Complete, and Cochrane up to 22 August 2018 for studies published 2001–2018 in all languages.
  • Eligible studies were any design, included people aged ≥14 years formally or self-identified as having intellectual disability and/or autism, and/or their family members, carers, support workers, or healthcare professionals, and explored access to primary health care for physical and/or mental health needs.
  • Two researchers independently screened titles/abstracts; three independently assessed full texts; two independently assessed quality using the Mixed Methods Analysis Tool (MMAT); data were extracted with a piloted tool and analysed using thematic analysis, with two researchers developing themes and narratively synthesising them.

Limitations

  • The paper states that searches of other relevant databases such as PsycINFO, grey literature, and reference/citation checking were not undertaken owing to staffing resource constraints; most identified studies were from high-income countries and may not reflect low- and middle-income countries or all high-income countries; the review was limited to individuals aged ≥14 years; convenience samples and self-selection may bias results; and some studies were limited to urban rather than rural areas.
  • The paper states that the publication dates 2001–2018 were not stated in the study protocol.
  • The text makes evident that the review excluded systematic reviews, book reviews, editorials, commentaries, epidemiological studies, and prevalence studies, so such sources could not contribute to the synthesis.

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Integrity signals

Registry

Crossref · 10.3399/bjgpopen20x101030

Cites

83 of 83 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Verification

Claims the paper makes

0 of 127 cited sources checked · 0 supported · 0 flagged

Show all 37 claims

  • It may state two separate claims as one. 24
  • Probably not a substantial claim. 22
42 of 42
  • The paper relies on this without support.

    This is the first integrative review of barriers and facilitators to accessing and utilising primary health care experienced by adolescents and adults with intellectual disabilities and/or autism.

    “To the authors’ knowledge, this is the first integrative review of barriers and facilitators to accessing and utilising primary health care experienced by adolescents and adults with intellectual disabilities and/or autism.”
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Metadata

Authors
Doherty, A. J., Atherton, H., Boland, P., Hastings, R., Hives, L., Hood, K., James-Jenkinson, L., Leavey, R., Randell, E., Reed, J., Taggart, L., Wilson, N., & Chauhan, U.
Affiliations
  • University of Lancashire (GB)
  • University of Warwick (GB)
  • Cardiff University (GB)
  • University of Ulster (GB)
Corresponding author
Doherty, Alison Jayne
Venue
BJGP Open
Published
2020-06-30
Volume
4
Issue
3
Pages
bjgpopen20X101030
ISSN
2398-3795 (ISSN-L)
OpenAlex
W2989625113
Cited by
244
References
83
Citations by year
2026: 48 · 2025: 55 · 2024: 53 · 2023: 42 · 2022: 31 · 2021: 13 · 2020: 2
FWCI
16.50
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • BJGP Open (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Ulster University Research Portal (Ulster University) (publishedVersion, cc-by)
  • ORCA Online Research @Cardiff (Cardiff University) (acceptedVersion)
  • Warwick Research Archive Portal (University of Warwick) (acceptedVersion)
  • CLOK (University of Central Lancashire) (acceptedVersion)
  • ePrints Soton (University of Southampton) (submittedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • University of Birmingham Research Portal (University of Birmingham) (submittedVersion, other-oa)
  • Research Portal (Queen's University Belfast) (submittedVersion, cc-by)
Funders
  • University of Central Lancashire
  • National Institute for Health and Care Research
  • Department of Health and Social Care
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
  • Social Sciences › Education › Inclusion and Disability in Education and Sport
  • Social Sciences › Sociology and Political Science › Disability Rights and Representation
Keywords
intellectual disability, autism spectrum disorder, primary care access, barriers to care, facilitators of care, health disparities, caregivers, healthcare communication, reasonable accommodation, patient involvement in treatment decisions, health professions education, mental health needs, physical health needs

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