Characteristics associated with healthcare independence among autistic adults / Anne LONGO in Research in Autism Spectrum Disorders, 95 (July 2022)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 95 (July 2022) . - 101972 Titre : Characteristics associated with healthcare independence among autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Anne LONGO, Auteur ; Dan GILMORE, Auteur ; Jennifer GARVIN, Auteur ; J. Madison HYER, Auteur ; Daniel COURY, Auteur ; Christopher HANKS, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Amy HESS, Auteur ; Brittany N. HAND, Auteur Article en page(s) : 101972 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Adults  Healthcare independence  Healthcare transition  Autism Index. décimale : PER Périodiques Résumé : Background Healthcare independence refers to someone?s ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults. Method We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n = 19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n = 11), who provided proxy-reports. Results Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence. Conclusions Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence. En ligne : https://doi.org/10.1016/j.rasd.2022.101972 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 [article] Characteristics associated with healthcare independence among autistic adults [Texte imprimé et/ou numérique] / Anne LONGO, Auteur ; Dan GILMORE, Auteur ; Jennifer GARVIN, Auteur ; J. Madison HYER, Auteur ; Daniel COURY, Auteur ; Christopher HANKS, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Amy HESS, Auteur ; Brittany N. HAND, Auteur . - 101972. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 95 (July 2022) . - 101972 Mots-clés : Autism spectrum disorder  Adults  Healthcare independence  Healthcare transition  Autism Index. décimale : PER Périodiques Résumé : Background Healthcare independence refers to someone?s ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults. Method We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n = 19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n = 11), who provided proxy-reports. Results Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence. Conclusions Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence. En ligne : https://doi.org/10.1016/j.rasd.2022.101972 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475

''Giving the patients less work'': A thematic analysis of telehealth use and recommendations to improve usability for autistic adults / Daniel GILMORE in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1132-1141 Titre : ''Giving the patients less work'': A thematic analysis of telehealth use and recommendations to improve usability for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Christopher HANKS, Auteur ; Daniel COURY, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Jennifer H GARVIN, Auteur ; Brittany N HAND, Auteur Article en page(s) : p.1132-1141 Langues : Anglais (eng) Mots-clés : autism,primary care,telehealth,virtual visit Index. décimale : PER Périodiques Résumé : Virtual visits are a telehealth service where patients and providers communicate in real-time using audio and/or video technology. Setting up a virtual visit is complex and may pose challenges for some autistic adults. We conducted semi-structured interviews with autistic adults (n=7), family members of autistic adults (n=12), and clinic personnel (n=6) from one US-based clinic and used thematic analysis to identify factors affecting usability of virtual visits. We found virtual visit preparation involves multiple contacts between clinic personnel and patients or family members via a variety of channels and usability was affected by technology considerations, logistical considerations, and expectations for visits. Participants said technological experience and using the patient portal enhanced usability, but technological issues could increase anxiety. Clinic personnel reported time constraints created logistical barriers to virtual visits; streamlining the process before the visit via the patient portal may improve the usability of virtual visits for autistic adults, family members, and clinic personnel. Participants also reported unclear expectations for virtual visits reduced usability and recommended reminders, instructional videos, and estimated wait-times to clarify expectations. While our findings are based on a single clinic, they may help inform usability improvement efforts in other clinics offering virtual visits for autistic adults.Lay abstractReal-time telehealth visits, called ''virtual visits,'' are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members. En ligne : https://doi.org/10.1177/13623613221132422 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] ''Giving the patients less work'': A thematic analysis of telehealth use and recommendations to improve usability for autistic adults [Texte imprimé et/ou numérique] / Daniel GILMORE, Auteur ; Lauren HARRIS, Auteur ; Christopher HANKS, Auteur ; Daniel COURY, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Jennifer H GARVIN, Auteur ; Brittany N HAND, Auteur . - p.1132-1141. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1132-1141 Mots-clés : autism,primary care,telehealth,virtual visit Index. décimale : PER Périodiques Résumé : Virtual visits are a telehealth service where patients and providers communicate in real-time using audio and/or video technology. Setting up a virtual visit is complex and may pose challenges for some autistic adults. We conducted semi-structured interviews with autistic adults (n=7), family members of autistic adults (n=12), and clinic personnel (n=6) from one US-based clinic and used thematic analysis to identify factors affecting usability of virtual visits. We found virtual visit preparation involves multiple contacts between clinic personnel and patients or family members via a variety of channels and usability was affected by technology considerations, logistical considerations, and expectations for visits. Participants said technological experience and using the patient portal enhanced usability, but technological issues could increase anxiety. Clinic personnel reported time constraints created logistical barriers to virtual visits; streamlining the process before the visit via the patient portal may improve the usability of virtual visits for autistic adults, family members, and clinic personnel. Participants also reported unclear expectations for virtual visits reduced usability and recommended reminders, instructional videos, and estimated wait-times to clarify expectations. While our findings are based on a single clinic, they may help inform usability improvement efforts in other clinics offering virtual visits for autistic adults.Lay abstractReal-time telehealth visits, called ''virtual visits,'' are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members. En ligne : https://doi.org/10.1177/13623613221132422 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Specialized primary care medical home: A positive impact on continuity of care among autistic adults / Brittany N. HAND in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.258-265 Titre : Specialized primary care medical home: A positive impact on continuity of care among autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Brittany N. HAND, Auteur ; Daniel L. COURY, Auteur ; Susan W. WHITE, Auteur ; Amy R. DARRAGH, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Lauren HARRIS, Auteur ; Anne LONGO, Auteur ; Jennifer H. GARVIN, Auteur Article en page(s) : p.258-265 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  continuity of care  health services  primary care Index. décimale : PER Périodiques Résumé : There is a nationally recognized need for innovative healthcare delivery models to improve care continuity for autistic adults as they age out of pediatric and into adult healthcare systems. One possible model of care delivery is called the "medical home". The medical home is not a residential home, but a system where a patient's healthcare is coordinated through a primary care physician to ensure necessary care is received when and where the patient needs it. We compared the continuity of care among autistic adult patients at a specialized primary care medical home designed to remove barriers to care for autistic adults, called the CAST, to matched national samples of autistic adults with private insurance or Medicare. Continuity of primary care among CAST patients was significantly better than that of matched national samples of autistic adult Medicare beneficiaries and similar to that of privately insured autistic adults. Our findings suggest that medical homes, like CAST, are a promising solution to improve healthcare delivery for the growing population of autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320953967 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 [article] Specialized primary care medical home: A positive impact on continuity of care among autistic adults [Texte imprimé et/ou numérique] / Brittany N. HAND, Auteur ; Daniel L. COURY, Auteur ; Susan W. WHITE, Auteur ; Amy R. DARRAGH, Auteur ; Susan MOFFATT-BRUCE, Auteur ; Lauren HARRIS, Auteur ; Anne LONGO, Auteur ; Jennifer H. GARVIN, Auteur . - p.258-265. Langues : Anglais (eng) in Autism > 25-1 (January 2021) . - p.258-265 Mots-clés : adults  autism spectrum disorders  continuity of care  health services  primary care Index. décimale : PER Périodiques Résumé : There is a nationally recognized need for innovative healthcare delivery models to improve care continuity for autistic adults as they age out of pediatric and into adult healthcare systems. One possible model of care delivery is called the "medical home". The medical home is not a residential home, but a system where a patient's healthcare is coordinated through a primary care physician to ensure necessary care is received when and where the patient needs it. We compared the continuity of care among autistic adult patients at a specialized primary care medical home designed to remove barriers to care for autistic adults, called the CAST, to matched national samples of autistic adults with private insurance or Medicare. Continuity of primary care among CAST patients was significantly better than that of matched national samples of autistic adult Medicare beneficiaries and similar to that of privately insured autistic adults. Our findings suggest that medical homes, like CAST, are a promising solution to improve healthcare delivery for the growing population of autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320953967 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437

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