Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals / Barbara MUSKAT in Autism, 19-4 (May 2015)  

Public ISBD [article]  inAutism > 19-4 (May 2015) . - p.482-490 Titre : Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals Type de document : Texte imprimé et/ou numérique Auteurs : Barbara MUSKAT, Auteur ; Priscilla BURNHAM RIOSA, Auteur ; David B NICHOLAS, Auteur ; Wendy ROBERTS, Auteur ; Kevin P. STODDART, Auteur ; Lonnie ZWAIGENBAUM, Auteur Article en page(s) : p.482-490 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group. En ligne : http://dx.doi.org/10.1177/1362361314531341 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257 [article] Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals [Texte imprimé et/ou numérique] / Barbara MUSKAT, Auteur ; Priscilla BURNHAM RIOSA, Auteur ; David B NICHOLAS, Auteur ; Wendy ROBERTS, Auteur ; Kevin P. STODDART, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - p.482-490. Langues : Anglais (eng) in Autism > 19-4 (May 2015) . - p.482-490 Index. décimale : PER Périodiques Résumé : Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group. En ligne : http://dx.doi.org/10.1177/1362361314531341 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257

Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists / Amanpreet RANDHAWA ; Barbara MUSKAT in Journal of Autism and Developmental Disorders, 54-1 (January 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-1 (January 2024) . - p.312-325 Titre : Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists Type de document : Texte imprimé et/ou numérique Auteurs : Amanpreet RANDHAWA, Auteur ; Barbara MUSKAT, Auteur Article en page(s) : p.312-325 Index. décimale : PER Périodiques Résumé : The hospital setting may be especially difficult for pediatric patients on the autism spectrum and their families compared to those not on the spectrum. Child life specialists are healthcare professionals specifically trained to support parents and their children and help prepare them for hospital procedures. Because of this specialized skill set, these professionals likely have a wealth of expertise to share relevant to caring for autistic patients. This study aimed to understand 21 child life specialists? experiences working with patients on the spectrum. Our findings highlighted the following themes: Parents are the Experts, Proactive and Individualized Care, Disclosure, and Hospital-Wide Suggestions to Improve Patient Care. We discuss the practice implications of these findings on the healthcare experiences of pediatric patients on the spectrum. En ligne : https://doi.org/10.1007/s10803-022-05776-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520 [article] Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists [Texte imprimé et/ou numérique] / Amanpreet RANDHAWA, Auteur ; Barbara MUSKAT, Auteur . - p.312-325. in Journal of Autism and Developmental Disorders > 54-1 (January 2024) . - p.312-325 Index. décimale : PER Périodiques Résumé : The hospital setting may be especially difficult for pediatric patients on the autism spectrum and their families compared to those not on the spectrum. Child life specialists are healthcare professionals specifically trained to support parents and their children and help prepare them for hospital procedures. Because of this specialized skill set, these professionals likely have a wealth of expertise to share relevant to caring for autistic patients. This study aimed to understand 21 child life specialists? experiences working with patients on the spectrum. Our findings highlighted the following themes: Parents are the Experts, Proactive and Individualized Care, Disclosure, and Hospital-Wide Suggestions to Improve Patient Care. We discuss the practice implications of these findings on the healthcare experiences of pediatric patients on the spectrum. En ligne : https://doi.org/10.1007/s10803-022-05776-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520

Couple relationships among parents of children and adolescents with Autism Spectrum Disorder: Findings from a scoping review of the literature / Michael SAINI in Research in Autism Spectrum Disorders, 17 (September 2015)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 17 (September 2015) . - p.142-157 Titre : Couple relationships among parents of children and adolescents with Autism Spectrum Disorder: Findings from a scoping review of the literature Type de document : Texte imprimé et/ou numérique Auteurs : Michael SAINI, Auteur ; Kevin P. STODDART, Auteur ; Margaret GIBSON, Auteur ; Rae MORRIS, Auteur ; Deborah BARRETT, Auteur ; Barbara MUSKAT, Auteur ; David B NICHOLAS, Auteur ; Glenn RAMPTON, Auteur ; Lonnie ZWAIGENBAUM, Auteur Année de publication : 2015 Article en page(s) : p.142-157 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder (ASD)  Marital relationship  Couple relationship  Co-parenting  Divorce  Scoping review Index. décimale : PER Périodiques Résumé : Abstract To explore commonly-held assumptions regarding the risk of couple breakdown in families of children with Autism Spectrum Disorder (ASD), a scoping review of quantitative (n = 39), qualitative (n = 15), and mixed (n = 5) studies was conducted. Findings include themes related to marriage and divorce rates, relationship satisfaction and conflict, and other significant variables. Parents and service providers of individuals with ASD will benefit from knowing that strategies such as developing common goals, increasing partner respect, securing social support, reducing stress, and instilling hope are all factors which support the development and maintenance of positive couple and co-parenting relationships. En ligne : http://dx.doi.org/10.1016/j.rasd.2015.06.014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=263 [article] Couple relationships among parents of children and adolescents with Autism Spectrum Disorder: Findings from a scoping review of the literature [Texte imprimé et/ou numérique] / Michael SAINI, Auteur ; Kevin P. STODDART, Auteur ; Margaret GIBSON, Auteur ; Rae MORRIS, Auteur ; Deborah BARRETT, Auteur ; Barbara MUSKAT, Auteur ; David B NICHOLAS, Auteur ; Glenn RAMPTON, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - 2015 . - p.142-157. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 17 (September 2015) . - p.142-157 Mots-clés : Autism Spectrum Disorder (ASD)  Marital relationship  Couple relationship  Co-parenting  Divorce  Scoping review Index. décimale : PER Périodiques Résumé : Abstract To explore commonly-held assumptions regarding the risk of couple breakdown in families of children with Autism Spectrum Disorder (ASD), a scoping review of quantitative (n = 39), qualitative (n = 15), and mixed (n = 5) studies was conducted. Findings include themes related to marriage and divorce rates, relationship satisfaction and conflict, and other significant variables. Parents and service providers of individuals with ASD will benefit from knowing that strategies such as developing common goals, increasing partner respect, securing social support, reducing stress, and instilling hope are all factors which support the development and maintenance of positive couple and co-parenting relationships. En ligne : http://dx.doi.org/10.1016/j.rasd.2015.06.014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=263

Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments / Barbara MUSKAT in Autism, 20-8 (November 2016)  

Public ISBD [article]  inAutism > 20-8 (November 2016) . - p.986-994 Titre : Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments Type de document : Texte imprimé et/ou numérique Auteurs : Barbara MUSKAT, Auteur ; Andrea GREENBLATT, Auteur ; David B NICHOLAS, Auteur ; Savithiri RATNAPALAN, Auteur ; Justine COHEN-SILVER, Auteur ; Amanda S NEWTON, Auteur ; William R. CRAIG, Auteur ; Christopher KILMER, Auteur ; Lonnie ZWAIGENBAUM, Auteur Article en page(s) : p.986-994 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  disclosure  emergency department  pediatrics Index. décimale : PER Périodiques Résumé : Children and youth with autism spectrum disorder presenting in emergency departments face potential cognitive, sensory, and behavioral challenges, and it is crucial for providers to be aware of their unique needs. However, disclosure of a child’s autism spectrum disorder can be complex for parental caregivers and is not well understood. This qualitative study utilized a grounded theory approach and analyzed data from 28 parents and 16 health care providers related to autism spectrum disorder disclosure within two Canadian pediatric emergency departments. Study results indicated that participants identified benefits and risks of disclosure. Encouraging understanding, expediting service, and preparing health care providers for working with children with autism spectrum disorder were identified as benefits of disclosure. Risks related to disclosure included potential negative attributions toward the children and parental discomfort in disclosing a diagnosis in front of the children. Parents discussed the health care encounters they experienced following disclosure and provided recommendations for improving the disclosure process in the emergency department. It is recommended that future research explore the experiences of parents who choose not to disclose their child’s autism spectrum disorder. Greater awareness of the disclosure experience and the development of resources and tools to support communication between parents and health care providers are also recommended. En ligne : http://dx.doi.org/10.1177/1362361315621520 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=294 [article] Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments [Texte imprimé et/ou numérique] / Barbara MUSKAT, Auteur ; Andrea GREENBLATT, Auteur ; David B NICHOLAS, Auteur ; Savithiri RATNAPALAN, Auteur ; Justine COHEN-SILVER, Auteur ; Amanda S NEWTON, Auteur ; William R. CRAIG, Auteur ; Christopher KILMER, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - p.986-994. Langues : Anglais (eng) in Autism > 20-8 (November 2016) . - p.986-994 Mots-clés : autism spectrum disorder  disclosure  emergency department  pediatrics Index. décimale : PER Périodiques Résumé : Children and youth with autism spectrum disorder presenting in emergency departments face potential cognitive, sensory, and behavioral challenges, and it is crucial for providers to be aware of their unique needs. However, disclosure of a child’s autism spectrum disorder can be complex for parental caregivers and is not well understood. This qualitative study utilized a grounded theory approach and analyzed data from 28 parents and 16 health care providers related to autism spectrum disorder disclosure within two Canadian pediatric emergency departments. Study results indicated that participants identified benefits and risks of disclosure. Encouraging understanding, expediting service, and preparing health care providers for working with children with autism spectrum disorder were identified as benefits of disclosure. Risks related to disclosure included potential negative attributions toward the children and parental discomfort in disclosing a diagnosis in front of the children. Parents discussed the health care encounters they experienced following disclosure and provided recommendations for improving the disclosure process in the emergency department. It is recommended that future research explore the experiences of parents who choose not to disclose their child’s autism spectrum disorder. Greater awareness of the disclosure experience and the development of resources and tools to support communication between parents and health care providers are also recommended. En ligne : http://dx.doi.org/10.1177/1362361315621520 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=294

Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder / Lonnie ZWAIGENBAUM in Journal of Autism and Developmental Disorders, 46-5 (May 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-5 (May 2016) . - p.1725-1736 Titre : Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Lonnie ZWAIGENBAUM, Auteur ; David B NICHOLAS, Auteur ; Barbara MUSKAT, Auteur ; Christopher KILMER, Auteur ; Amanda S. NEWTON, Auteur ; William R. CRAIG, Auteur ; Savithiri RATNAPALAN, Auteur ; Justine COHEN-SILVER, Auteur ; Andrea GREENBLATT, Auteur ; Wendy ROBERTS, Auteur ; Raphael SHARON, Auteur Article en page(s) : p.1725-1736 Langues : Anglais (eng) Mots-clés : Autism  Emergency care  Health care provider  Pediatrics  Grounded theory Index. décimale : PER Périodiques Résumé : This study aimed to characterize the perspectives of health professionals who care for children with autism spectrum disorder (ASD) in the emergency department (ED) and to determine what strategies could optimize care. Ten physicians and twelve nurses were interviewed individually. Questions related to experiences, processes, clinical decision-making and outcomes of children with ASD recently seen in the ED. Interviews were audio recorded, transcribed, and analyzed using a qualitative framework. Participants identified factors that facilitated effective care, including communication strategies, parental involvement and teamwork. Barriers identified included child characteristics, the ED environment, and competing demands. Recommendations included additional staff training and stakeholder engagement. However, making accommodations was often described as being at odds with how the ED functioned, with implications for future service planning. En ligne : http://dx.doi.org/10.1007/s10803-016-2703-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=288 [article] Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Lonnie ZWAIGENBAUM, Auteur ; David B NICHOLAS, Auteur ; Barbara MUSKAT, Auteur ; Christopher KILMER, Auteur ; Amanda S. NEWTON, Auteur ; William R. CRAIG, Auteur ; Savithiri RATNAPALAN, Auteur ; Justine COHEN-SILVER, Auteur ; Andrea GREENBLATT, Auteur ; Wendy ROBERTS, Auteur ; Raphael SHARON, Auteur . - p.1725-1736. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-5 (May 2016) . - p.1725-1736 Mots-clés : Autism  Emergency care  Health care provider  Pediatrics  Grounded theory Index. décimale : PER Périodiques Résumé : This study aimed to characterize the perspectives of health professionals who care for children with autism spectrum disorder (ASD) in the emergency department (ED) and to determine what strategies could optimize care. Ten physicians and twelve nurses were interviewed individually. Questions related to experiences, processes, clinical decision-making and outcomes of children with ASD recently seen in the ED. Interviews were audio recorded, transcribed, and analyzed using a qualitative framework. Participants identified factors that facilitated effective care, including communication strategies, parental involvement and teamwork. Barriers identified included child characteristics, the ED environment, and competing demands. Recommendations included additional staff training and stakeholder engagement. However, making accommodations was often described as being at odds with how the ED functioned, with implications for future service planning. En ligne : http://dx.doi.org/10.1007/s10803-016-2703-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=288

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