Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review / Jamil JIVRAJ in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.782-793 Titre : Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review Type de document : texte imprimé Auteurs : Jamil JIVRAJ, Auteur ; Lori-Ann R. SACREY, Auteur ; Amanda S. NEWTON, Auteur ; David B. NICHOLAS, Auteur ; Lonnie ZWAIGENBAUM, Auteur Article en page(s) : p.782-793 Langues : Anglais (eng) Mots-clés : autism  neurodevelopmental disorders  participatory research partnerships Index. décimale : PER Périodiques Résumé : Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify and characterize published participatory research partnerships between researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders and examine the influence of participatory research partnerships on the research process and reported study outcomes. A search of databases and review of gray literature identified seven studies that described participatory research partnerships between academic researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders. A comparative analysis of the studies revealed two key themes: (1) variations in the participatory research design and (2) limitations during the reporting of the depth of the partner’s involvement. Both themes potentially limit the application and generalizability of the findings. The results of the review are discussed in relation to the use of evaluative frameworks for such participatory research studies to determine the potential benefits of participatory research partnerships within the neurodevelopmental and autism spectrum disorder populations. En ligne : http://dx.doi.org/10.1177/1362361314539858 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review [texte imprimé] / Jamil JIVRAJ, Auteur ; Lori-Ann R. SACREY, Auteur ; Amanda S. NEWTON, Auteur ; David B. NICHOLAS, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - p.782-793. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.782-793 Mots-clés : autism  neurodevelopmental disorders  participatory research partnerships Index. décimale : PER Périodiques Résumé : Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify and characterize published participatory research partnerships between researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders and examine the influence of participatory research partnerships on the research process and reported study outcomes. A search of databases and review of gray literature identified seven studies that described participatory research partnerships between academic researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders. A comparative analysis of the studies revealed two key themes: (1) variations in the participatory research design and (2) limitations during the reporting of the depth of the partner’s involvement. Both themes potentially limit the application and generalizability of the findings. The results of the review are discussed in relation to the use of evaluative frameworks for such participatory research studies to determine the potential benefits of participatory research partnerships within the neurodevelopmental and autism spectrum disorder populations. En ligne : http://dx.doi.org/10.1177/1362361314539858 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

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 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] / 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 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] / 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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