Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions / Karen A. KUHLTHAU in Autism, 19-3 (April 2015)  

Public ISBD [article]  inAutism > 19-3 (April 2015) . - p.262-271 Titre : Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Marji E. WARFIELD, Auteur ; Jill HURSON, Auteur ; Jennifer DELAHAYE, Auteur ; Morgan K. CROSSMAN, Auteur Article en page(s) : p.262-271 Langues : Anglais (eng) Mots-clés : autism  transition  youth  healthcare  pediatrics Index. décimale : PER Périodiques Résumé : Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement. En ligne : http://dx.doi.org/10.1177/1362361313518125 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257 [article] Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Marji E. WARFIELD, Auteur ; Jill HURSON, Auteur ; Jennifer DELAHAYE, Auteur ; Morgan K. CROSSMAN, Auteur . - p.262-271. Langues : Anglais (eng) in Autism > 19-3 (April 2015) . - p.262-271 Mots-clés : autism  transition  youth  healthcare  pediatrics Index. décimale : PER Périodiques Résumé : Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement. En ligne : http://dx.doi.org/10.1177/1362361313518125 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257

Quality of life for parents of children with autism spectrum disorders / Karen A. KUHLTHAU in Research in Autism Spectrum Disorders, 8-10 (October 2014)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 8-10 (October 2014) . - p.1339-1350 Titre : Quality of life for parents of children with autism spectrum disorders Type de document : Texte imprimé et/ou numérique Auteurs : Karen A. KUHLTHAU, Auteur ; Nalin PAYAKACHAT, Auteur ; Jennifer DELAHAYE, Auteur ; Jill HURSON, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; J. Mick TILFORD, Auteur Article en page(s) : p.1339-1350 Langues : Anglais (eng) Mots-clés : Health-related quality of life  Parent  Parent well-being  Depression Index. décimale : PER Périodiques Résumé : This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. En ligne : http://dx.doi.org/10.1016/j.rasd.2014.07.002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=239 [article] Quality of life for parents of children with autism spectrum disorders [Texte imprimé et/ou numérique] / Karen A. KUHLTHAU, Auteur ; Nalin PAYAKACHAT, Auteur ; Jennifer DELAHAYE, Auteur ; Jill HURSON, Auteur ; Jeffrey M. PYNE, Auteur ; Erica KOVACS, Auteur ; J. Mick TILFORD, Auteur . - p.1339-1350. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 8-10 (October 2014) . - p.1339-1350 Mots-clés : Health-related quality of life  Parent  Parent well-being  Depression Index. décimale : PER Périodiques Résumé : This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. En ligne : http://dx.doi.org/10.1016/j.rasd.2014.07.002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=239

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