10 recherche sur le mot-clé 'Delivery of Health Care'

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)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4172-4180 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 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 [article] Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care [texte imprimé] / 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)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-3 (March 2015) . - p.636-644 Titre : The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders Type de document : texte imprimé 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 [article] The Impact of the Medical Home on Access to Care for Children with Autism Spectrum Disorders [texte imprimé] / 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 / Michelle MENEZES in Autism, 25-8 (November 2021)  

Public ISBD [article]  inAutism > 25-8 (November 2021) . - p.2199-2208 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 Auteurs : Michelle MENEZES, Auteur ; Melissa F. ROBINSON, Auteur ; Christina HARKINS, Auteur ; Eleonora SADIKOVA, Auteur ; Micah 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 [article] Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability [texte imprimé] / Michelle MENEZES, Auteur ; Melissa F. ROBINSON, Auteur ; Christina HARKINS, Auteur ; Eleonora SADIKOVA, Auteur ; Micah 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)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-6 (June 2021) . - p.2036-2046 Titre : Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version Type de document : texte imprimé Auteurs : Nancy C. CHEAK-ZAMORA, Auteur ; Greg PETROSKI, Auteur ; Anna LA MANNA, Auteur ; David Q. BEVERSDORF, Auteur ; Janet E. 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 [article] Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version [texte imprimé] / Nancy C. CHEAK-ZAMORA, Auteur ; Greg PETROSKI, Auteur ; Anna LA MANNA, Auteur ; David Q. BEVERSDORF, Auteur ; Janet E. 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 and transgender/gender diverse people's experiences of health and healthcare / Elizabeth WEIR ; Lily WRIGHT ; Carrie ALLISON ; Simon BARON-COHEN in Molecular Autism, 16 (2025)  

Public ISBD [article]  inMolecular Autism > 16 (2025) . - 4 Titre : Autistic and transgender/gender diverse people's experiences of health and healthcare Type de document : texte imprimé Auteurs : Elizabeth WEIR, Auteur ; Lily WRIGHT, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : 4 Langues : Anglais (eng) Mots-clés : Humans  Male  Female  Transgender Persons/psychology  Adult  Autistic Disorder/psychology/epidemiology  Middle Aged  Young Adult  Delivery of Health Care  Adolescent  Surveys and Questionnaires  Autism  Healthcare  Healthcare quality  Mental health  Physical health  Self-harm  Transgender/gender diverse  provided by the Psychology Research Ethics Committee of the University of  Cambridge (PRE.2019.049). Competing interests: Prof. Sir Simon Baron-Cohen was a  founding Co-Editor-in-Chief of Molecular Autism. Index. décimale : PER Périodiques Résumé : BACKGROUND: Autistic people and transgender/gender diverse people experience poorer healthcare experiences and greater risk of diagnosed, suspected, and assessment recommended health conditions, compared to non-autistic and cisgender individuals, respectively. Despite this, there is a paucity of studies on the healthcare experiences and health outcomes of transgender/gender diverse autistic individuals. METHODS: We compared the healthcare experiences and health outcomes of cisgender autistic (n = 1094), transgender/gender diverse autistic (n = 174), and cisgender non-autistic adults (n = 1295) via an anonymous, self-report survey. All individuals whose sex assigned at birth did not match their current gender identity were categorized as transgender/gender diverse; this was possible to determine, as the survey asked about sex assigned at birth and gender in separate questions. Unfortunately, n = 57 transgender/gender diverse non-autistic participants were excluded from these analyses a priori, due to low power. Unadjusted and adjusted binomial logistic regression models with FDR correction were employed to assess healthcare experiences and rates of co-occurring mental and physical health conditions. RESULTS: Both transgender/gender diverse and cisgender autistic adults had higher rates of all health conditions (including conditions that are formally diagnosed, suspected, or recommended for assessment), compared to cisgender non-autistic adults. Transgender/gender diverse autistic adults were 2.3 times more likely to report a physical health condition, 10.9 times more likely to report a mental health condition, and 5.8 times more likely to report self-harm than cisgender non-autistic adults. Both autistic groups also reported significantly poorer healthcare experiences across 50/51 items. LIMITATIONS: These data were not originally collected to understand the experiences of transgender/gender diverse individuals. In addition, our recruitment strategies, use of a convenience sampling method, and the use of a self-report survey limit the generalizability of the study. As our sample was biased towards white individuals, UK residents, relatively highly educated individuals, those assigned female at birth, and those who currently identify as female, our findings may be less applicable to individuals of differing demographics. Finally, the present study does not include information on the experiences of transgender/gender diverse non-autistic people. CONCLUSIONS: Autistic people have poorer self-reported health and healthcare; however, being gender diverse is associated with further risk for certain adverse experiences and outcomes. Future research on the health and healthcare experiences of transgender/gender diverse autistic people is urgently needed. In particular, forthcoming studies in this area should aim to recruit large-scale and representative studies and should compare the experiences of transgender/gender diverse autistic people to those of transgender/gender diverse non-autistic people. Greater recognition of challenges and reasonable adjustments are essential for people with marginalized, intersectional identities in clinical practice. En ligne : https://dx.doi.org/10.1186/s13229-024-00634-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555 [article] Autistic and transgender/gender diverse people's experiences of health and healthcare [texte imprimé] / Elizabeth WEIR, Auteur ; Lily WRIGHT, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur . - 4. Langues : Anglais (eng) in Molecular Autism > 16 (2025) . - 4 Mots-clés : Humans  Male  Female  Transgender Persons/psychology  Adult  Autistic Disorder/psychology/epidemiology  Middle Aged  Young Adult  Delivery of Health Care  Adolescent  Surveys and Questionnaires  Autism  Healthcare  Healthcare quality  Mental health  Physical health  Self-harm  Transgender/gender diverse  provided by the Psychology Research Ethics Committee of the University of  Cambridge (PRE.2019.049). Competing interests: Prof. Sir Simon Baron-Cohen was a  founding Co-Editor-in-Chief of Molecular Autism. Index. décimale : PER Périodiques Résumé : BACKGROUND: Autistic people and transgender/gender diverse people experience poorer healthcare experiences and greater risk of diagnosed, suspected, and assessment recommended health conditions, compared to non-autistic and cisgender individuals, respectively. Despite this, there is a paucity of studies on the healthcare experiences and health outcomes of transgender/gender diverse autistic individuals. METHODS: We compared the healthcare experiences and health outcomes of cisgender autistic (n = 1094), transgender/gender diverse autistic (n = 174), and cisgender non-autistic adults (n = 1295) via an anonymous, self-report survey. All individuals whose sex assigned at birth did not match their current gender identity were categorized as transgender/gender diverse; this was possible to determine, as the survey asked about sex assigned at birth and gender in separate questions. Unfortunately, n = 57 transgender/gender diverse non-autistic participants were excluded from these analyses a priori, due to low power. Unadjusted and adjusted binomial logistic regression models with FDR correction were employed to assess healthcare experiences and rates of co-occurring mental and physical health conditions. RESULTS: Both transgender/gender diverse and cisgender autistic adults had higher rates of all health conditions (including conditions that are formally diagnosed, suspected, or recommended for assessment), compared to cisgender non-autistic adults. Transgender/gender diverse autistic adults were 2.3 times more likely to report a physical health condition, 10.9 times more likely to report a mental health condition, and 5.8 times more likely to report self-harm than cisgender non-autistic adults. Both autistic groups also reported significantly poorer healthcare experiences across 50/51 items. LIMITATIONS: These data were not originally collected to understand the experiences of transgender/gender diverse individuals. In addition, our recruitment strategies, use of a convenience sampling method, and the use of a self-report survey limit the generalizability of the study. As our sample was biased towards white individuals, UK residents, relatively highly educated individuals, those assigned female at birth, and those who currently identify as female, our findings may be less applicable to individuals of differing demographics. Finally, the present study does not include information on the experiences of transgender/gender diverse non-autistic people. CONCLUSIONS: Autistic people have poorer self-reported health and healthcare; however, being gender diverse is associated with further risk for certain adverse experiences and outcomes. Future research on the health and healthcare experiences of transgender/gender diverse autistic people is urgently needed. In particular, forthcoming studies in this area should aim to recruit large-scale and representative studies and should compare the experiences of transgender/gender diverse autistic people to those of transgender/gender diverse non-autistic people. Greater recognition of challenges and reasonable adjustments are essential for people with marginalized, intersectional identities in clinical practice. En ligne : https://dx.doi.org/10.1186/s13229-024-00634-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555

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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COVID-19 Pandemic and Impact on Patients with Autism Spectrum Disorder / Raman BAWEJA in Journal of Autism and Developmental Disorders, 52-1 (January 2022)  

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'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)  

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'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)  

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Service Use Among Transition-Age Youth with Autism Spectrum Disorder / Karen J. ISHLER in Journal of Autism and Developmental Disorders, 52-3 (March 2022)  

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