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

Barriers and facilitators to primary healthcare for people with intellectual disabilities and/or autism: an integrative review
Barriers and facilitators to primary healthcare for people with intellectual disabilities and/or autism: an integrative review
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.
2398-3795
Doherty, Alison Jayne
a31196c0-a68d-4078-ba15-03fb907f81a1
Atherton, Helen
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Boland, Paul
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Hastings, Richard
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Hives, Lucy
f1ec59f0-e5ad-4218-8c61-1cae34e8edff
Hood, Kerry
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James-Jenkinson, Lynn
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Leavey, Ralph
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Randell, Elizabeth
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Reed, Janet
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Taggart, Laurence
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Wilson, Neil
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Chauhan, Umesh
61bc8745-c1e9-4cc7-a8e4-bb26012e4e66
Doherty, Alison Jayne
a31196c0-a68d-4078-ba15-03fb907f81a1
Atherton, Helen
9bb8932e-7bb7-4781-ab97-114613de99b1
Boland, Paul
32260051-ceec-4976-84ea-a3a2b07b4de9
Hastings, Richard
4fd1ea2a-233f-461b-94c0-769e7d9e2c3c
Hives, Lucy
f1ec59f0-e5ad-4218-8c61-1cae34e8edff
Hood, Kerry
12e14eb3-2c75-409f-a69d-add733644d89
James-Jenkinson, Lynn
f69d56a2-41e7-4999-a1a1-d148954678fc
Leavey, Ralph
256435cb-23cb-4c90-a021-0fe063ece598
Randell, Elizabeth
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Reed, Janet
f23de801-80a4-4067-89df-14ed112e79a2
Taggart, Laurence
24f118a4-8224-46a5-a6ef-12ec7952e25f
Wilson, Neil
0a51cef6-4cae-48d5-b561-a099a33537d6
Chauhan, Umesh
61bc8745-c1e9-4cc7-a8e4-bb26012e4e66

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 and Chauhan, Umesh (2020) Barriers and facilitators to primary healthcare for people with intellectual disabilities and/or autism: an integrative review. BJGP Open, 4 (3). (doi:10.3399/bjgpopen20X101030).

Record type: Article

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.

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Accepted/In Press date: 23 October 2019
e-pub ahead of print date: 25 August 2020

Identifiers

Local EPrints ID: 486606
URI: http://eprints.soton.ac.uk/id/eprint/486606
ISSN: 2398-3795
PURE UUID: 02b44b34-a24c-4522-a794-07cc77365f49
ORCID for Helen Atherton: ORCID iD orcid.org/0000-0002-7072-1925

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Date deposited: 26 Jan 2024 18:00
Last modified: 18 Mar 2024 04:18

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Contributors

Author: Alison Jayne Doherty
Author: Helen Atherton ORCID iD
Author: Paul Boland
Author: Richard Hastings
Author: Lucy Hives
Author: Kerry Hood
Author: Lynn James-Jenkinson
Author: Ralph Leavey
Author: Elizabeth Randell
Author: Janet Reed
Author: Laurence Taggart
Author: Neil Wilson
Author: Umesh Chauhan

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