Centre d'Information et de documentation du CRA Rhône-Alpes
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Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home / Jill F HARRIS in Autism, 25-3 (April 2021)
[article]
Titre : Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home Type de document : Texte imprimé et/ou numérique Auteurs : Jill F HARRIS, Auteur ; Leigh P. GORMAN, Auteur ; Aditi DOSHI, Auteur ; Shannon SWOPE, Auteur ; Shayleigh D. PAGE, Auteur Article en page(s) : p.753-766 Langues : Anglais (eng) Mots-clés : adolescents autism spectrum disorder health care transition young adults Index. décimale : PER Périodiques Résumé : As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions. En ligne : http://dx.doi.org/10.1177/1362361320974491 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444
in Autism > 25-3 (April 2021) . - p.753-766[article] Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home [Texte imprimé et/ou numérique] / Jill F HARRIS, Auteur ; Leigh P. GORMAN, Auteur ; Aditi DOSHI, Auteur ; Shannon SWOPE, Auteur ; Shayleigh D. PAGE, Auteur . - p.753-766.
Langues : Anglais (eng)
in Autism > 25-3 (April 2021) . - p.753-766
Mots-clés : adolescents autism spectrum disorder health care transition young adults Index. décimale : PER Périodiques Résumé : As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions. En ligne : http://dx.doi.org/10.1177/1362361320974491 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 “You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services / Nancy C. CHEAK-ZAMORA in Autism, 19-8 (November 2015)
[article]
Titre : “You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services Type de document : Texte imprimé et/ou numérique Auteurs : Nancy C. CHEAK-ZAMORA, Auteur ; Michelle TETI, Auteur Article en page(s) : p.992-1001 Langues : Anglais (eng) Mots-clés : adolescence/youth autism caregiving health care transition Index. décimale : PER Périodiques Résumé : Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n?=?13) and their caregivers (n?=?19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder. En ligne : http://dx.doi.org/10.1177/1362361314558279 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269
in Autism > 19-8 (November 2015) . - p.992-1001[article] “You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services [Texte imprimé et/ou numérique] / Nancy C. CHEAK-ZAMORA, Auteur ; Michelle TETI, Auteur . - p.992-1001.
Langues : Anglais (eng)
in Autism > 19-8 (November 2015) . - p.992-1001
Mots-clés : adolescence/youth autism caregiving health care transition Index. décimale : PER Périodiques Résumé : Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n?=?13) and their caregivers (n?=?19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder. En ligne : http://dx.doi.org/10.1177/1362361314558279 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 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