Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities / Dora M. RAYMAKER in Autism, 21-8 (November 2017)  

Public ISBD [article]  inAutism > 21-8 (November 2017) . - p.972-984 Titre : Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities Type de document : Texte imprimé et/ou numérique Auteurs : Dora M. RAYMAKER, Auteur ; Katherine E. MCDONALD, Auteur ; Elesia ASHKENAZY, Auteur ; Martha GERRITY, Auteur ; Amelia M. BAGGS, Auteur ; Clarissa KRIPKE, Auteur ; Sarah HOURSTON, Auteur ; Christina NICOLAIDIS, Auteur Année de publication : 2017 Article en page(s) : p.972-984 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist?Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n=74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n=67)), concern about cost (30% (n=62)), facilities causing sensory issues 30% ((n=62)), and difficulty communicating with providers (29% (n=61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2?0.8, p? En ligne : https://doi.org/10.1177/1362361316661261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=320 [article] Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities [Texte imprimé et/ou numérique] / Dora M. RAYMAKER, Auteur ; Katherine E. MCDONALD, Auteur ; Elesia ASHKENAZY, Auteur ; Martha GERRITY, Auteur ; Amelia M. BAGGS, Auteur ; Clarissa KRIPKE, Auteur ; Sarah HOURSTON, Auteur ; Christina NICOLAIDIS, Auteur . - 2017 . - p.972-984. Langues : Anglais (eng) in Autism > 21-8 (November 2017) . - p.972-984 Index. décimale : PER Périodiques Résumé : Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist?Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n=74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n=67)), concern about cost (30% (n=62)), facilities causing sensory issues 30% ((n=62)), and difficulty communicating with providers (29% (n=61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2?0.8, p? En ligne : https://doi.org/10.1177/1362361316661261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=320

“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum / Christina NICOLAIDIS in Autism, 19-7 (October 2015)  

Public ISBD [article]  inAutism > 19-7 (October 2015) . - p.824-831 Titre : “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Dora M. RAYMAKER, Auteur ; Elesia ASHKENAZY, Auteur ; Katherine E. MCDONALD, Auteur ; Sebastian DERN, Auteur ; Amelia E. V. BAGGS, Auteur ; Steven K. KAPP, Auteur ; Michael WEINER, Auteur ; W. Cody BOISCLAIR, Auteur Année de publication : 2015 Article en page(s) : p.824-831 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  community-based participatory research  health services  qualitative research Index. décimale : PER Périodiques Résumé : Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination. En ligne : http://dx.doi.org/10.1177/1362361315576221 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Dora M. RAYMAKER, Auteur ; Elesia ASHKENAZY, Auteur ; Katherine E. MCDONALD, Auteur ; Sebastian DERN, Auteur ; Amelia E. V. BAGGS, Auteur ; Steven K. KAPP, Auteur ; Michael WEINER, Auteur ; W. Cody BOISCLAIR, Auteur . - 2015 . - p.824-831. Langues : Anglais (eng) in Autism > 19-7 (October 2015) . - p.824-831 Mots-clés : adults  autism spectrum disorders  community-based participatory research  health services  qualitative research Index. décimale : PER Périodiques Résumé : Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination. En ligne : http://dx.doi.org/10.1177/1362361315576221 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants / C. NICOLAIDIS in Autism, 23-8 (November 2019)  

Public ISBD [article]  inAutism > 23-8 (November 2019) . - p.2007-2019 Titre : The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants Type de document : Texte imprimé et/ou numérique Auteurs : C. NICOLAIDIS, Auteur ; D. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; A. BAGGS, Auteur ; Elesia ASHKENAZY, Auteur ; K. MCDONALD, Auteur ; M. WEINER, Auteur ; J. MASLAK, Auteur ; M. HUNTER, Auteur ; A. JOYCE, Auteur Article en page(s) : p.2007-2019 Langues : Anglais (eng) Mots-clés : adults  autism  participatory research  qualitative research  research ethics  survey adaptation Index. décimale : PER Périodiques Résumé : As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research. En ligne : http://dx.doi.org/10.1177/1362361319830523 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 [article] The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants [Texte imprimé et/ou numérique] / C. NICOLAIDIS, Auteur ; D. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; A. BAGGS, Auteur ; Elesia ASHKENAZY, Auteur ; K. MCDONALD, Auteur ; M. WEINER, Auteur ; J. MASLAK, Auteur ; M. HUNTER, Auteur ; A. JOYCE, Auteur . - p.2007-2019. Langues : Anglais (eng) in Autism > 23-8 (November 2019) . - p.2007-2019 Mots-clés : adults  autism  participatory research  qualitative research  research ethics  survey adaptation Index. décimale : PER Périodiques Résumé : As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research. En ligne : http://dx.doi.org/10.1177/1362361319830523 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407

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