David B Nicholas1, Barbara Muskat2, Lonnie Zwaigenbaum3, Andrea Greenblatt4, Savithiri Ratnapalan5, Christopher Kilmer6, William Craig3, Wendy Roberts2, Justine Cohen-Silver5, Amanda Newton3, Raphael Sharon3. 1. Faculty of Social Work, Central and Northern Alberta Region, University of Calgary, Edmonton, Alberta, Canada; nicholas@ucalgary.ca. 2. Integrated Services for Autism and Neurodevelopmental Disorders, Toronto, Ontario, Canada. 3. Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada. 4. Department of Social Work, Hospital for Sick Children, Toronto, Ontario, Canada; and. 5. Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada. 6. Faculty of Social Work, Central and Northern Alberta Region, University of Calgary, Edmonton, Alberta, Canada.
Abstract
BACKGROUND: Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD. METHODS: Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components. RESULTS: Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care. CONCLUSIONS: Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.
BACKGROUND: Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD. METHODS: Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components. RESULTS: Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care. CONCLUSIONS: Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.
Authors: Adrien A Eshraghi; Crystal Li; Michael Alessandri; Daniel S Messinger; Rebecca S Eshraghi; Rahul Mittal; F Daniel Armstrong Journal: Lancet Psychiatry Date: 2020-05-20 Impact factor: 27.083
Authors: Cristina García-Bravo; Domingo Palacios-Ceña; Sara García-Bravo; Jorge Pérez-Corrales; Marta Pérez-de-Heredia-Torres; Rosa Mª Martínez-Piédrola Journal: Int J Environ Res Public Health Date: 2022-08-24 Impact factor: 4.614