Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum

Introduction: People on the autism spectrum often experience poorer health than the general population despite higher engagement with the health services. This suggests a disparity in the accessibility of appropriate healthcare for autistic individuals. To improve access, barriers the autism communi...

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Autores:
Tipo de recurso:
Article of investigation
Fecha de publicación:
2020
Institución:
Universidad de Bogotá Jorge Tadeo Lozano
Repositorio:
Expeditio: repositorio UTadeo
Idioma:
eng
OAI Identifier:
oai:expeditiorepositorio.utadeo.edu.co:20.500.12010/14574
Acceso en línea:
https://doi.org/10.1016/j.rasd.2020.101680
http://hdl.handle.net/20.500.12010/14574
Palabra clave:
Autism spectrum disorder
Healthcare access
Reasonable adjustments
Healthcare equity
Healthcare disparities
Health
Síndrome respiratorio agudo grave
COVID-19
SARS-CoV-2
Coronavirus
Rights
License
Abierto (Texto Completo)
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network_name_str Expeditio: repositorio UTadeo
repository_id_str
dc.title.spa.fl_str_mv Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
title Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
spellingShingle Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
Autism spectrum disorder
Healthcare access
Reasonable adjustments
Healthcare equity
Healthcare disparities
Health
Síndrome respiratorio agudo grave
COVID-19
SARS-CoV-2
Coronavirus
title_short Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
title_full Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
title_fullStr Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
title_full_unstemmed Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
title_sort Development and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrum
dc.subject.spa.fl_str_mv Autism spectrum disorder
Healthcare access
Reasonable adjustments
Healthcare equity
Healthcare disparities
Health
topic Autism spectrum disorder
Healthcare access
Reasonable adjustments
Healthcare equity
Healthcare disparities
Health
Síndrome respiratorio agudo grave
COVID-19
SARS-CoV-2
Coronavirus
dc.subject.lemb.spa.fl_str_mv Síndrome respiratorio agudo grave
COVID-19
SARS-CoV-2
Coronavirus
description Introduction: People on the autism spectrum often experience poorer health than the general population despite higher engagement with the health services. This suggests a disparity in the accessibility of appropriate healthcare for autistic individuals. To improve access, barriers the autism community experience in healthcare first need to be identified. This paper aimed to: 1) develop and evaluate a caregiver-report tool; 2) identify barriers to physical healthcare for autistic individuals; and 3) identify potential contributing factors. Methods: A previously established taxonomy of barriers to healthcare for autistic individuals informed the development of the tool; this was then distributed to caregivers of autistic adults and children. Exploratory factor analysis (EFA) assessed validity and reliability of the tool. Multiple Regressions were performed to identify predictors of barriers. Results: In total, caregivers of 194 autistic children or adults participated in the study. The EFA produced four factors: 1) patient-level barriers; 2) healthcare provider-level (HCP) barriers; 3) healthcare system-level barriers; and 4) barriers related to managing healthcare. The greatest barriers included difficulties with identifying/reporting symptoms (endorsed by 62.4% of participants); difficulties handling the waiting area (60.3% of participants); and a lack of HCP knowledge regarding autism (52.1% of participants). Autism severity, general adjustment problems, anxiety, age and having unmet needs predicted the frequency and/or severity of barriers. Conclusions: A tool that allows assessment of patient-, HCP-, and system-level barriers to healthcare was developed and evaluated. Patient-level barriers appear to occur frequently and pose substantial challenges. This tool will help identify areas most in need of intervention and support intervention evaluation.
publishDate 2020
dc.date.accessioned.none.fl_str_mv 2020-10-19T16:17:17Z
dc.date.available.none.fl_str_mv 2020-10-19T16:17:17Z
dc.date.created.none.fl_str_mv 2020
dc.type.local.spa.fl_str_mv Artículo
dc.type.coar.spa.fl_str_mv http://purl.org/coar/resource_type/c_2df8fbb1
format http://purl.org/coar/resource_type/c_2df8fbb1
dc.identifier.issn.spa.fl_str_mv 1750-9467
dc.identifier.other.spa.fl_str_mv https://doi.org/10.1016/j.rasd.2020.101680
dc.identifier.uri.none.fl_str_mv http://hdl.handle.net/20.500.12010/14574
dc.identifier.doi.spa.fl_str_mv https://doi.org/10.1016/j.rasd.2020.101680
identifier_str_mv 1750-9467
url https://doi.org/10.1016/j.rasd.2020.101680
http://hdl.handle.net/20.500.12010/14574
dc.language.iso.spa.fl_str_mv eng
language eng
dc.rights.coar.fl_str_mv http://purl.org/coar/access_right/c_abf2
dc.rights.local.spa.fl_str_mv Abierto (Texto Completo)
rights_invalid_str_mv Abierto (Texto Completo)
http://purl.org/coar/access_right/c_abf2
dc.format.extent.spa.fl_str_mv 15 páginas
dc.format.mimetype.spa.fl_str_mv application/pdf
dc.publisher.spa.fl_str_mv Research in Autism Spectrum Disorders
dc.source.spa.fl_str_mv reponame:Expeditio Repositorio Institucional UJTL
instname:Universidad de Bogotá Jorge Tadeo Lozano
instname_str Universidad de Bogotá Jorge Tadeo Lozano
institution Universidad de Bogotá Jorge Tadeo Lozano
reponame_str Expeditio Repositorio Institucional UJTL
collection Expeditio Repositorio Institucional UJTL
bitstream.url.fl_str_mv https://expeditiorepositorio.utadeo.edu.co/bitstream/20.500.12010/14574/3/Development-and-evaluation-of-a-novel-caregiver-report-_2020_Research-in-Aut.pdf.jpg
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spelling 2020-10-19T16:17:17Z2020-10-19T16:17:17Z20201750-9467https://doi.org/10.1016/j.rasd.2020.101680http://hdl.handle.net/20.500.12010/14574https://doi.org/10.1016/j.rasd.2020.101680Introduction: People on the autism spectrum often experience poorer health than the general population despite higher engagement with the health services. This suggests a disparity in the accessibility of appropriate healthcare for autistic individuals. To improve access, barriers the autism community experience in healthcare first need to be identified. This paper aimed to: 1) develop and evaluate a caregiver-report tool; 2) identify barriers to physical healthcare for autistic individuals; and 3) identify potential contributing factors. Methods: A previously established taxonomy of barriers to healthcare for autistic individuals informed the development of the tool; this was then distributed to caregivers of autistic adults and children. Exploratory factor analysis (EFA) assessed validity and reliability of the tool. Multiple Regressions were performed to identify predictors of barriers. Results: In total, caregivers of 194 autistic children or adults participated in the study. The EFA produced four factors: 1) patient-level barriers; 2) healthcare provider-level (HCP) barriers; 3) healthcare system-level barriers; and 4) barriers related to managing healthcare. The greatest barriers included difficulties with identifying/reporting symptoms (endorsed by 62.4% of participants); difficulties handling the waiting area (60.3% of participants); and a lack of HCP knowledge regarding autism (52.1% of participants). Autism severity, general adjustment problems, anxiety, age and having unmet needs predicted the frequency and/or severity of barriers. Conclusions: A tool that allows assessment of patient-, HCP-, and system-level barriers to healthcare was developed and evaluated. Patient-level barriers appear to occur frequently and pose substantial challenges. This tool will help identify areas most in need of intervention and support intervention evaluation.15 páginasapplication/pdfengResearch in Autism Spectrum Disordersreponame:Expeditio Repositorio Institucional UJTLinstname:Universidad de Bogotá Jorge Tadeo LozanoAutism spectrum disorderHealthcare accessReasonable adjustmentsHealthcare equityHealthcare disparitiesHealthSíndrome respiratorio agudo graveCOVID-19SARS-CoV-2CoronavirusDevelopment and evaluation of a novel caregiver-report tool to assess barriers to physical healthcare for people on the autism spectrumArtículohttp://purl.org/coar/resource_type/c_2df8fbb1Abierto (Texto Completo)http://purl.org/coar/access_right/c_abf2Walsh, C.Lydon, S.Hehir, A.O’Connor, P.THUMBNAILDevelopment-and-evaluation-of-a-novel-caregiver-report-_2020_Research-in-Aut.pdf.jpgDevelopment-and-evaluation-of-a-novel-caregiver-report-_2020_Research-in-Aut.pdf.jpgIM Thumbnailimage/jpeg14231https://expeditiorepositorio.utadeo.edu.co/bitstream/20.500.12010/14574/3/Development-and-evaluation-of-a-novel-caregiver-report-_2020_Research-in-Aut.pdf.jpge4fc0811c5713865007ff9319fb0ed78MD53open accessLICENSElicense.txtlicense.txttext/plain; charset=utf-82938https://expeditiorepositorio.utadeo.edu.co/bitstream/20.500.12010/14574/2/license.txtabceeb1c943c50d3343516f9dbfc110fMD52open access20.500.12010/14574oai:expeditiorepositorio.utadeo.edu.co:20.500.12010/145742021-03-12 18:35:27.851metadata only accessRepositorio Institucional - Universidad Jorge Tadeo Lozanoexpeditio@utadeo.edu.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