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A realist review of health passports for Autistic adults

Rebecca Ellis Orcid Logo, Kathryn Williams Orcid Logo, Amy Brown Orcid Logo, Eleanor Healer, Aimee Grant Orcid Logo

PLOS ONE, Volume: 18, Issue: 9, Start page: e0279214

Swansea University Authors: Rebecca Ellis Orcid Logo, Amy Brown Orcid Logo, Eleanor Healer, Aimee Grant Orcid Logo

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DOI (Published version): 10.1371/journal.pone.0279214

Abstract

Background: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical...

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Published in: PLOS ONE
ISSN: 1932-6203
Published: Public Library of Science (PLoS) 2023
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URI: https://cronfa.swan.ac.uk/Record/cronfa64505
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Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. Findings: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. Conclusion: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.</abstract><type>Journal Article</type><journal>PLOS ONE</journal><volume>18</volume><journalNumber>9</journalNumber><paginationStart>e0279214</paginationStart><paginationEnd/><publisher>Public Library of Science (PLoS)</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>1932-6203</issnElectronic><keywords>Autism, Autistic adults, Autism Health Passports, AHPs, cognitive diversity, neurodivergent, systematic literature search</keywords><publishedDay>8</publishedDay><publishedMonth>9</publishedMonth><publishedYear>2023</publishedYear><publishedDate>2023-09-08</publishedDate><doi>10.1371/journal.pone.0279214</doi><url>http://dx.doi.org/10.1371/journal.pone.0279214</url><notes/><college>COLLEGE NANME</college><department>Health and Social Care School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>HSOC</DepartmentCode><institution>Swansea University</institution><apcterm>SU Library paid the OA fee (TA Institutional Deal)</apcterm><funders>AG, KW, AB and EH received funding for this research from the Swansea University Accelerate Health Tech Centre. 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spelling 2024-02-01T15:24:40.1035753 v2 64505 2023-09-11 A realist review of health passports for Autistic adults 8ea1fbb848d05d2f0262c6d03cfc9698 0000-0002-7761-468X Rebecca Ellis Rebecca Ellis true false 37aea6965461cb0510473d109411a0c3 0000-0002-0438-0157 Amy Brown Amy Brown true false c9d763c0465e5c951f7db564a16ea739 Eleanor Healer Eleanor Healer true false 6a1ce3bc54c692c804e858b70d2e4bd2 0000-0001-7205-5869 Aimee Grant Aimee Grant true false 2023-09-11 HSOC Background: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. Findings: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. Conclusion: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes. Journal Article PLOS ONE 18 9 e0279214 Public Library of Science (PLoS) 1932-6203 Autism, Autistic adults, Autism Health Passports, AHPs, cognitive diversity, neurodivergent, systematic literature search 8 9 2023 2023-09-08 10.1371/journal.pone.0279214 http://dx.doi.org/10.1371/journal.pone.0279214 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University SU Library paid the OA fee (TA Institutional Deal) AG, KW, AB and EH received funding for this research from the Swansea University Accelerate Health Tech Centre. Reference: 07/09/21. RE's time was funded by this grant. 2024-02-01T15:24:40.1035753 2023-09-11T14:27:12.3813960 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Rebecca Ellis 0000-0002-7761-468X 1 Kathryn Williams 0000-0001-7274-3493 2 Amy Brown 0000-0002-0438-0157 3 Eleanor Healer 4 Aimee Grant 0000-0001-7205-5869 5 64505__28703__5b110c4b684b45d3b4f2bd0b50c1a796.pdf 64505.VOR.pdf 2023-10-04T14:50:30.6068085 Output 1413741 application/pdf Version of Record true © 2023 Ellis et al. Distributed under the terms of a Creative Commons Attribution 4.0 License (CC BY 4.0). true eng https://creativecommons.org/licenses/by/4.0/
title A realist review of health passports for Autistic adults
spellingShingle A realist review of health passports for Autistic adults
Rebecca Ellis
Amy Brown
Eleanor Healer
Aimee Grant
title_short A realist review of health passports for Autistic adults
title_full A realist review of health passports for Autistic adults
title_fullStr A realist review of health passports for Autistic adults
title_full_unstemmed A realist review of health passports for Autistic adults
title_sort A realist review of health passports for Autistic adults
author_id_str_mv 8ea1fbb848d05d2f0262c6d03cfc9698
37aea6965461cb0510473d109411a0c3
c9d763c0465e5c951f7db564a16ea739
6a1ce3bc54c692c804e858b70d2e4bd2
author_id_fullname_str_mv 8ea1fbb848d05d2f0262c6d03cfc9698_***_Rebecca Ellis
37aea6965461cb0510473d109411a0c3_***_Amy Brown
c9d763c0465e5c951f7db564a16ea739_***_Eleanor Healer
6a1ce3bc54c692c804e858b70d2e4bd2_***_Aimee Grant
author Rebecca Ellis
Amy Brown
Eleanor Healer
Aimee Grant
author2 Rebecca Ellis
Kathryn Williams
Amy Brown
Eleanor Healer
Aimee Grant
format Journal article
container_title PLOS ONE
container_volume 18
container_issue 9
container_start_page e0279214
publishDate 2023
institution Swansea University
issn 1932-6203
doi_str_mv 10.1371/journal.pone.0279214
publisher Public Library of Science (PLoS)
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
url http://dx.doi.org/10.1371/journal.pone.0279214
document_store_str 1
active_str 0
description Background: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. Findings: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. Conclusion: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.
published_date 2023-09-08T02:57:39Z
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