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Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care / Jennifer L. KOUO in Journal of Autism and Developmental Disorders, 52-9 (September 2022)
[article]
Titre : Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care Type de document : Texte imprimé et/ou numérique Auteurs : Jennifer L. KOUO, Auteur ; Theodore S. KOUO, Auteur ; Jillian GALLOGLY, Auteur Article en page(s) : p.4172-4180 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy Child Delivery of Health Care Health Personnel Humans Patient-Centered Care Acute care settings Autism spectrum disorder Families Healthcare Patient- and family-centered care Perspectives Index. décimale : PER Périodiques Résumé : Patient-and family-centered care (PFCC) is a partnership among healthcare professionals, patients, and families that is grounded in mutual respect and is an approach that impacts delivery of care, decision-making, and information sharing. PFCC should be implemented for all, including individuals with Autism Spectrum Disorders (ASD), who experience adverse medical encounters despite increased prevalence and healthcare utilization. Insights into the experiences of families during medical experiences can inform clinical practice by increasing healthcare professionals' understanding of the population. Using a mixed-methods approach, the perspectives of 40 families were analyzed. The themes include barriers and opportunities to improve upon the delivery of PFCC, which help to advance healthcare interactions and inform solution-based initiatives to facilitate medical visits that may benefit all patients. En ligne : http://dx.doi.org/10.1007/s10803-021-05272-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486
in Journal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4172-4180[article] Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care [Texte imprimé et/ou numérique] / Jennifer L. KOUO, Auteur ; Theodore S. KOUO, Auteur ; Jillian GALLOGLY, Auteur . - p.4172-4180.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4172-4180
Mots-clés : Autism Spectrum Disorder/therapy Child Delivery of Health Care Health Personnel Humans Patient-Centered Care Acute care settings Autism spectrum disorder Families Healthcare Patient- and family-centered care Perspectives Index. décimale : PER Périodiques Résumé : Patient-and family-centered care (PFCC) is a partnership among healthcare professionals, patients, and families that is grounded in mutual respect and is an approach that impacts delivery of care, decision-making, and information sharing. PFCC should be implemented for all, including individuals with Autism Spectrum Disorders (ASD), who experience adverse medical encounters despite increased prevalence and healthcare utilization. Insights into the experiences of families during medical experiences can inform clinical practice by increasing healthcare professionals' understanding of the population. Using a mixed-methods approach, the perspectives of 40 families were analyzed. The themes include barriers and opportunities to improve upon the delivery of PFCC, which help to advance healthcare interactions and inform solution-based initiatives to facilitate medical visits that may benefit all patients. En ligne : http://dx.doi.org/10.1007/s10803-021-05272-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486 The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders / Nancy C. CHEAK-ZAMORA in Journal of Autism and Developmental Disorders, 45-3 (March 2015)
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Titre : The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Nancy C. CHEAK-ZAMORA, Auteur ; Janet E. FARMER, Auteur Article en page(s) : p.636-644 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder Delivery of health care Unmet needs Medical home Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009–2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home. Logistic regression models explored the individual impact of demographic, condition-specific and medical home variables on unmet need. Parents reported that nearly all children had a need for specialty services, 36 % had an unmet need, and 23.9 % had a medical home. Children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home, and this relationship remained significant even when demographic and condition-specific variables were taken into account. These findings suggest ways to improve access to care for children with ASD through enhanced family-centered and coordinated care within the medical home. En ligne : http://dx.doi.org/10.1007/s10803-014-2218-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=258
in Journal of Autism and Developmental Disorders > 45-3 (March 2015) . - p.636-644[article] The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders [Texte imprimé et/ou numérique] / Nancy C. CHEAK-ZAMORA, Auteur ; Janet E. FARMER, Auteur . - p.636-644.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 45-3 (March 2015) . - p.636-644
Mots-clés : Autism spectrum disorder Delivery of health care Unmet needs Medical home Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009–2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home. Logistic regression models explored the individual impact of demographic, condition-specific and medical home variables on unmet need. Parents reported that nearly all children had a need for specialty services, 36 % had an unmet need, and 23.9 % had a medical home. Children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home, and this relationship remained significant even when demographic and condition-specific variables were taken into account. These findings suggest ways to improve access to care for children with ASD through enhanced family-centered and coordinated care within the medical home. En ligne : http://dx.doi.org/10.1007/s10803-014-2218-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=258 Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability / M. MENEZES in Autism, 25-8 (November 2021)
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Titre : Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability Type de document : Texte imprimé et/ou numérique Auteurs : M. MENEZES, Auteur ; M. F. ROBINSON, Auteur ; C. HARKINS, Auteur ; E. SADIKOVA, Auteur ; M. O. MAZUREK, Auteur Article en page(s) : p.2199-2208 Langues : Anglais (eng) Mots-clés : Adolescent Autism Spectrum Disorder/complications/epidemiology/therapy Autistic Disorder Child Comorbidity Delivery of Health Care Humans Intellectual Disability/epidemiology/therapy adolescents autism spectrum disorders health services school-age children Index. décimale : PER Périodiques Résumé : The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population. En ligne : http://dx.doi.org/10.1177/13623613211014721 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451
in Autism > 25-8 (November 2021) . - p.2199-2208[article] Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability [Texte imprimé et/ou numérique] / M. MENEZES, Auteur ; M. F. ROBINSON, Auteur ; C. HARKINS, Auteur ; E. SADIKOVA, Auteur ; M. O. MAZUREK, Auteur . - p.2199-2208.
Langues : Anglais (eng)
in Autism > 25-8 (November 2021) . - p.2199-2208
Mots-clés : Adolescent Autism Spectrum Disorder/complications/epidemiology/therapy Autistic Disorder Child Comorbidity Delivery of Health Care Humans Intellectual Disability/epidemiology/therapy adolescents autism spectrum disorders health services school-age children Index. décimale : PER Périodiques Résumé : The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population. En ligne : http://dx.doi.org/10.1177/13623613211014721 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version / Nancy C. CHEAK-ZAMORA in Journal of Autism and Developmental Disorders, 51-6 (June 2021)
[article]
Titre : Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version Type de document : Texte imprimé et/ou numérique Auteurs : Nancy C. CHEAK-ZAMORA, Auteur ; G. PETROSKI, Auteur ; A. LA MANNA, Auteur ; David Q. BEVERSDORF, Auteur ; J. FARMER, Auteur Article en page(s) : p.2036-2046 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/psychology Caregivers Delivery of Health Care Factor Analysis, Statistical Humans Male Psychometrics/methods Transition to Adult Care Young Adult Autism spectrum disorders (ASD) Health care transition Independence Measurement Young adults Index. décimale : PER Périodiques Résumé : Little is known about Young adults with Autism Spectrum Disorder (YA-ASD) health, healthcare and safety needs. This study describes the validation of a health care transition measure for YA-ASD, the Health-Related Independence (HRI). We collected data from caregivers (n?=?490) at five Autism Treatment Network sites and compared the psychometric properties of HRI to the gold standard (STAR(x)) and other validated measures. A Confirmatory Factor Analysis and item culling resulted in 30 items addressing six subscales. Content, criterion, and construct validity and internal consistency indicated high validity and reliability for the scale and subscales. HRI is a validated caregiver-report measure of YA-ASD's self-management, safety, and transition skills. This novel measure will be a useful tool in clinics, intervention development, and research. En ligne : http://dx.doi.org/10.1007/s10803-020-04690-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452
in Journal of Autism and Developmental Disorders > 51-6 (June 2021) . - p.2036-2046[article] Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version [Texte imprimé et/ou numérique] / Nancy C. CHEAK-ZAMORA, Auteur ; G. PETROSKI, Auteur ; A. LA MANNA, Auteur ; David Q. BEVERSDORF, Auteur ; J. FARMER, Auteur . - p.2036-2046.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 51-6 (June 2021) . - p.2036-2046
Mots-clés : Autism Spectrum Disorder/psychology Caregivers Delivery of Health Care Factor Analysis, Statistical Humans Male Psychometrics/methods Transition to Adult Care Young Adult Autism spectrum disorders (ASD) Health care transition Independence Measurement Young adults Index. décimale : PER Périodiques Résumé : Little is known about Young adults with Autism Spectrum Disorder (YA-ASD) health, healthcare and safety needs. This study describes the validation of a health care transition measure for YA-ASD, the Health-Related Independence (HRI). We collected data from caregivers (n?=?490) at five Autism Treatment Network sites and compared the psychometric properties of HRI to the gold standard (STAR(x)) and other validated measures. A Confirmatory Factor Analysis and item culling resulted in 30 items addressing six subscales. Content, criterion, and construct validity and internal consistency indicated high validity and reliability for the scale and subscales. HRI is a validated caregiver-report measure of YA-ASD's self-management, safety, and transition skills. This novel measure will be a useful tool in clinics, intervention development, and research. En ligne : http://dx.doi.org/10.1007/s10803-020-04690-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452 Autistic adults have poorer quality healthcare and worse health based on self-report data / Elizabeth WEIR in Molecular Autism, 13 (2022)
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Titre : Autistic adults have poorer quality healthcare and worse health based on self-report data Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth WEIR, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : 23 p. Langues : Anglais (eng) Mots-clés : Adult Autistic Disorder/diagnosis/epidemiology Cross-Sectional Studies Delivery of Health Care Female Health Status Disparities Humans Infant, Newborn Self Report Index. décimale : PER Périodiques Résumé : BACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n=4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n=2649 participants (n=1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic. En ligne : http://dx.doi.org/10.1186/s13229-022-00501-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491
in Molecular Autism > 13 (2022) . - 23 p.[article] Autistic adults have poorer quality healthcare and worse health based on self-report data [Texte imprimé et/ou numérique] / Elizabeth WEIR, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur . - 23 p.
Langues : Anglais (eng)
in Molecular Autism > 13 (2022) . - 23 p.
Mots-clés : Adult Autistic Disorder/diagnosis/epidemiology Cross-Sectional Studies Delivery of Health Care Female Health Status Disparities Humans Infant, Newborn Self Report Index. décimale : PER Périodiques Résumé : BACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n=4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n=2649 participants (n=1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic. En ligne : http://dx.doi.org/10.1186/s13229-022-00501-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491 COVID-19 Pandemic and Impact on Patients with Autism Spectrum Disorder / R. BAWEJA in Journal of Autism and Developmental Disorders, 52-1 (January 2022)
Permalink'It's not that they don't want to access the support . . . it's the impact of the autism': The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals / Charli BABB in Autism, 25-5 (July 2021)
Permalink'It's not that they don't want to access the support . . . it's the impact of the autism': The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals / Charli BABB in Autism, 26-5 (July 2022)
PermalinkService Use Among Transition-Age Youth with Autism Spectrum Disorder / K. J. ISHLER in Journal of Autism and Developmental Disorders, 52-3 (March 2022)
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