Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale / Christina NICOLAIDIS in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.767-773 Titre : Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Gavin SCHNIDER, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur Article en page(s) : p.767-773 Langues : Anglais (eng) Mots-clés : accommodations  adult  autism  community-based participatory research  healthcare providers Index. décimale : PER Périodiques Résumé : The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively. En ligne : http://dx.doi.org/10.1177/1362361320949734 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Gavin SCHNIDER, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur . - p.767-773. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.767-773 Mots-clés : accommodations  adult  autism  community-based participatory research  healthcare providers Index. décimale : PER Périodiques Résumé : The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively. En ligne : http://dx.doi.org/10.1177/1362361320949734 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

œ[I] don’t wanna just be like a cog in the machine �: Narratives of autism and skilled employment / Dora M. RAYMAKER in Autism, 27-1 (January 2023)  

Public ISBD [article]  inAutism > 27-1 (January 2023) . - p.65-75 Titre : œ[I] don’t wanna just be like a cog in the machine �: Narratives of autism and skilled employment Type de document : Texte imprimé et/ou numérique Auteurs : Dora M. RAYMAKER, Auteur ; Mirah SHARER, Auteur ; Joelle MASLAK, Auteur ; Laurie E. POWERS, Auteur ; Katherine E. MCDONALD, Auteur ; Steven K. KAPP, Auteur ; Ian MOURA, Auteur ; Anna WALLINGTON, Auteur ; Christina NICOLAIDIS, Auteur Article en page(s) : p.65-75 Langues : Anglais (eng) Mots-clés : adults  autism  community based participatory research  employment  employment services  qualitative research  vocational/labor force participation Index. décimale : PER Périodiques Résumé : Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace. Lay abstract Autistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work. En ligne : http://dx.doi.org/10.1177/13623613221080813 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491 [article]  œ[I] don’t wanna just be like a cog in the machine �: Narratives of autism and skilled employment [Texte imprimé et/ou numérique] / Dora M. RAYMAKER, Auteur ; Mirah SHARER, Auteur ; Joelle MASLAK, Auteur ; Laurie E. POWERS, Auteur ; Katherine E. MCDONALD, Auteur ; Steven K. KAPP, Auteur ; Ian MOURA, Auteur ; Anna WALLINGTON, Auteur ; Christina NICOLAIDIS, Auteur . - p.65-75. Langues : Anglais (eng) in Autism > 27-1 (January 2023) . - p.65-75 Mots-clés : adults  autism  community based participatory research  employment  employment services  qualitative research  vocational/labor force participation Index. décimale : PER Périodiques Résumé : Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace. Lay abstract Autistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work. En ligne : http://dx.doi.org/10.1177/13623613221080813 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491

Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults / Christina NICOLAIDIS in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.786-799 Titre : Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Kelly Y ZHEN, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur ; Mirah SCHARER, Auteur Article en page(s) : p.786-799 Langues : Anglais (eng) Mots-clés : adults  autism  community-based participatory research  healthcare  patient-reported outcome measures  psychometrics Index. décimale : PER Périodiques Résumé : Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient-provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320967178 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Kelly Y ZHEN, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur ; Mirah SCHARER, Auteur . - p.786-799. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.786-799 Mots-clés : adults  autism  community-based participatory research  healthcare  patient-reported outcome measures  psychometrics Index. décimale : PER Périodiques Résumé : Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient-provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320967178 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

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