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

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 +5 more·2020·BJGP Open
DOI 10.3399/bjgpopen20x101030PMC PMC7465578
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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.

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.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.3399/bjgpopen20x101030

Cites

83 of 83 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

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

  • Findingown data

    Sixty-three studies met the eligibility criteria for inclusion in the review.

    “Sixty-three studies met the eligibility criteria for inclusion in the review.”
    Quote in the paperNot a substantial claim
  • Findingcitation

    Studies found a lack of awareness by healthcare providers about the range of communication issues faced by people with intellectual disabilities and/or autism when accessing and attending primary and acute healthcare settings.

    “Studies found a lack of awareness by healthcare providers about the range of communication issues faced by people with intellectual disabilities and/or autism when accessing and attending primary and acute healthcare settings.23,45–47”
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  • Findingcitation

    Healthcare providers recognise the importance of specialist training for people with intellectual disabilities and for others with communication challenges.

    “Despite this, healthcare providers recognise the importance of such specialist training for people with intellectual disabilities and for others with communication challenges.23”
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  • Findingcitation

    Poor attitudes held by both healthcare professionals and non-health professionals, across both primary and acute healthcare provider settings, is a recurring theme in the review's identified studies.

    “Poor attitudes held by both healthcare professionals and non-health professionals, across both primary and acute healthcare provider settings, is a recurring theme in the review’s identified studies.22,31–33”
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  • Findingown data

    Participants perceived barriers and facilitators within each theme as being integrated in an opposing fashion.

    “Participants perceived of barriers and facilitators within each of these themes as being integrated in an opposing fashion”
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  • May combine two claims. 24
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    Findingown data

    The review identified 53 qualitative studies, five mixed-methods studies, four quantitative studies, and one randomised controlled trial.

    “The review identified 53 qualitative studies, five mixed-methods studies, four quantitative studies, and one randomised controlled trial.”
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  • May combine two claims.

    Findingcitation

    Some healthcare information may be incomprehensible and/or difficult to obtain.

    “Some healthcare information may be incomprehensible and/or difficult to obtain.25,34,50,51”
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    Findingcitation

    The use of easy-read information, sign language, non-face-to-face communication, such as via the telephone, not overloading the service user with verbal information, and use of virtual reality have been suggested as preferred methods of communication for this population.

    “The use of easy-read information, sign language, non-face-to-face communication, such as via the telephone, not overloading the service user with verbal information, and use of virtual reality have been suggested as preferred methods of communication for this population.26,52”
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  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingown data

    Six common themes were identified by the thematic analysis.

    “Six common themes were identified by the thematic analysis.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    If these patients find health care stressful because of poor communication then they may lower their expectations, lower their attendance, and feel disaffected, and this may lead to ineffective health care.

    “If these patients find health care stressful because of poor communication then they may lower their expectations, lower their attendance, and feel disaffected, and this may lead to ineffective health care.23”
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  • May combine two claims.

    Findingown data

    Of the 63 eligible studies, 46 (73%) were rated as high quality, two were rated as good quality, seven were rated as being either satisfactory, poor, or very poor, and eight were not rated owing to their lack of reported information.

    “Of the 63 eligible studies, 46 (73%) were rated as high quality, two were rated as good quality, seven were rated as being either satisfactory, poor, or very poor, and eight were not rated owing to their lack of reported information.”
    Quote in the paperNot a substantial claim

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    Findingcitation

    Barriers to training include time constraints, knowledge gaps, and uncertainties over specialist help.

    “Barriers to their training include time constraints, knowledge gaps, and uncertainties over specialist help.23”
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    Findingcitation

    A warm, friendly, and caring attitude from healthcare providers enables service users to access healthcare facilities and discuss sensitive health concerns.

    “A warm, friendly, and caring attitude from healthcare providers enables service users to access healthcare facilities and discuss sensitive health concerns.22,34–37”
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  • May combine two claims.

    Findingown data

    Forty-nine studies explored the views and experiences of participants with intellectual disabilities, 13 studies explored the views and experiences of participants with autism, and one study explored the views and experiences of participants with both intellectual disabilities and autism.

    “Forty-nine studies explored the views and experiences of participants with intellectual disabilities, 13 studies explored the views and experiences of participants with autism, and one study explored the views and experiences of participants with both intellectual disabilities and autism.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Carers do not always allow the service user to speak for themselves or carers might try to protect them from perceived harmful communication, thereby preventing service users from exerting control over their own healthcare needs.

    “Carers do not always allow the service user to speak for themselves or carers might try to protect them from perceived harmful communication,28 thereby preventing service users from exerting control over their own healthcare needs.32”
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    Findingown data

    Twenty-four studies were conducted between 2003 and 2010, and 39 studies were conducted between 2011 and 2018.

    “Twenty-four studies were conducted between the years 2003 and 2010, and 39 studies were conducted between 2011 and 2018.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    Inadequate communication can result in the wrong diagnosis and inappropriate medication, and it can prevent a person's access to receiving adequate health care.

    “It causes problems in primary care as inadequate communication can result in the wrong diagnosis and inappropriate medication, and it can prevent a person’s access to receiving adequate health care.23,43,44”
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    • cites [43] Beange, 1990, Caring for the developmentally disabled in the community, Aust Fam Physician

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  • May combine two claims.

    Findingcitation

    People with intellectual disabilities and/or autism can make choices about their everyday lives, yet decisions about their health care may be made by their families, carers, and healthcare providers instead.

    “People with intellectual disabilities and/or autism can make choices about their everyday lives, yet decisions about their health care may be made by their families, carers, and healthcare providers instead.25”
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    Findingcitation

    Fears include fears of being judged over lifestyle choices, of blood tests and vaccinations, of medical instruments, and fears associated with a lack of understanding about screening procedures.

    “These include fears of being judged over lifestyle choices, of blood tests and vaccinations,38 of medical instruments,31 and fears associated with a lack of understanding about screening procedures.59”
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    Findingcitation

    They feel empowered when they are involved in the decision-making process and gain a better understanding of their treatment and diagnosis.

    “They feel empowered when they are involved in the decision-making process and gain a better understanding of their treatment and diagnosis.28,66”
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    Findingcitation

    Prolonged times waiting to be seen and limited time spent with a healthcare professional during an appointment act as barriers.

    “Prolonged times waiting to be seen and limited time spent with a healthcare professional during an appointment act as barriers.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingcitation

    Being treated with dignity and respect and being valued by healthcare providers are key facilitators, and are important in forming good relationships.

    “Being treated with dignity and respect and being valued by healthcare providers are key facilitators,47,53 and are important in forming good relationships.54”
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    Study design and conductnone given

    A third reviewer was involved where necessary.

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    Premisecitation

    Death occurs at a younger age for people with intellectual disabilities and/or autism than in the general population.

    “Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population.2”
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    Study design and conductown data

    Three researchers independently read and assessed the full texts of relevant citations using pre-specified eligibility criteria.

    “Three researchers independently read and assessed the full texts of relevant citations, using the pre-specified eligibility criteria.”
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    Premisecitation

    There may be overlap between these groups, but their needs may be unique and nuanced.

    “There may be overlap between these groups, but their needs may be unique and nuanced.11”
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    Study design and conductnone given

    Data were extracted using a data extraction tool specifically designed and piloted by the research team.

    “Data were extracted from the included studies using a data extraction tool, which was specifically designed and piloted by the research team.”
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    Study design and conductcitation

    Study quality was assessed independently by two researchers using the Mixed Methods Analysis Tool (MMAT).

    “Study quality was assessed independently by two researchers using the Mixed Methods Analysis Tool (MMAT).16,17”
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    Premisecitation

    UK guidance outlines the necessity of tailoring healthcare services to meet the needs of people with intellectual disabilities and/or autism.

    “UK guidance outlines the necessity of tailoring healthcare services to meet their needs.3”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [3] Royal College of General Practitioners Care of people with intellectual disability. 24 Jun 2020. https://www.gponline.com/rcgp-curriculum/care-of-people-with-learning-disabilities.

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    Study design and conductnone given

    Titles and abstracts were screened for relevance independently by two researchers.

    “Titles and abstracts were first screened for relevance independently by two researchers.”
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    Study design and conductown data

    The integrative review was conducted according to a pre-specified protocol.

    “The integrative review (utilising systematic review methodology) was conducted according to a pre-specified protocol”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductcitation

    The two researchers independently assessed the number of criteria met by each study in each MMAT domain and provided each study with a score.

    “The two researchers independently assessed the number of criteria met by each study in each of the MMAT’s domains of assessment17 and provided each study with a score.”
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  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    Two researchers independently developed the themes.

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    Study design and conductcitation

    The review was written in accordance with the PRISMA 2009 checklist and reporting standards.

    “written in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2009 checklist and reporting standards (Figure 1).12”
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    • cites [12] Higgins J Green S (2019) Cochrane Handbook for Systematic Reviews of Interventions. 17 Jun 2020. https://training.cochrane.org/handbook. source

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    The researchers' independent appraisal findings were compared and agreed.

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    Study design and conductnone given

    Themes were compared, key themes agreed, and narratively synthesised by the two researchers.

    “These themes were compared, key themes agreed, and narratively synthesised by the two researchers.”
    Quote in the paperNot a substantial claim

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    Premisecitation

    The prevalence of long-term morbidities is higher in people with intellectual disabilities and/or autism than in the general population.

    “Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population.2”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [2] source

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  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

    Interpretationreasoning

    Improving these issues could help alleviate some of the fears reported by service users, which represent another reported barrier.

    “Improving these issues could help alleviate some of the fears reported by service users, which represent another reported barrier.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Interpretationreasoning

    This may be associated with poor communication between such healthcare providers and service users, and a lack of involvement in healthcare decision-making processes for these service users.

    “This may be associated with poor communication between such healthcare providers and service users, and a lack of involvement in healthcare decision-making processes for these service users.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationnone given

    A lack of specialist training in both primary and acute health care is an important barrier, which may mean that healthcare providers lack knowledge and awareness of the healthcare needs of people with intellectual disabilities and/or autism.

    “A lack of specialist training in both primary and acute health care is an important barrier, which may mean that healthcare providers lack knowledge and awareness of the healthcare needs of people with intellectual disabilities and/or autism.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductreasoning

    Searches of grey literature and checking reference lists and citations for included studies were not undertaken, as originally stated in the study protocol, owing to staffing resource constraints.

    “Searches of grey literature and the checking of reference lists and citations for included studies were not undertaken, as originally stated in the study protocol, owing to staffing resource constraints.”
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    Study design and conductreasoning

    A search of other relevant databases, such as PsycINFO, grey literature, and checking references and citations of included studies, may have yielded additional results.

    “However, a search of other relevant databases, such as PsycINFO, grey literature (including guidance and policy documents), and checking the references and citations of included studies, may have yielded additional results.”
    Quote in the paperNot a substantial claim

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    Interpretationown data

    Most of the identified studies were conducted in high-income countries (HICs) and may not reflect the views and experiences of people with intellectual disabilities and/or autism from low- and middle-income countries.

    “Most of the identified studies were conducted in high-income countries (HICs) and may not reflect the views and experiences of people with intellectual disabilities and/or autism from low- and middle-income countries.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Study design and conductcitation

    Some studies were limited to urban areas as opposed to rural areas, which may pose different healthcare barriers.

    “Some studies were limited to urban areas as opposed to rural areas, which may pose different healthcare barriers.81,82”
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    Study design and conductcitation

    The use of convenience samples and self-selection may also bias the results.

    “The use of convenience samples23,56 and self-selection20 may also bias the results.”
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    Study design and conductnone given

    The review was limited to studies involving individuals with intellectual disabilities and/or autism who were aged ≥14 years.

    “The review was limited to studies involving individuals with intellectual disabilities and/or autism who were aged ≥14 years.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    There may be transferable evidence from studies involving children and younger people from this population and other cognitive disability populations (for example, patients with dementia, cerebral palsy, stroke, or acquired brain injury).

    “There may be transferable evidence from studies involving children and younger people from this population and other cognitive disability populations (for example, patients with dementia, cerebral palsy, stroke, or acquired brain injury).”
    Quote in the paperNot a substantial claim
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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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
ORCID
Venue
BJGP Open
Publisher
Royal College of General Practitioners
Published
2020-06-30
Volume
4
Issue
3
Pages
bjgpopen20X101030
ISSN
2398-3795 (ISSN-L)
DOI
10.3399/bjgpopen20x101030
PMC
PMC7465578
OpenAlex
W2989625113
Semantic Scholar
27ff004a1ff06e326effe8c1f50dd64b05a31357
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 › Sociology and Political Science › Inclusion and Disability in Education and Sport
  • Social Sciences › Safety Research › 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

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

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