Patient- and Family-Centered Care in the Emergency Department for Children With Autism.

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.

Toward Practice Advancement in Emergency Care for Children With Autism Spectrum Disorder.

BACKGROUND AND OBJECTIVE: There is increasing recognition that children with autism spectrum disorder (ASD) experience challenges in busy clinical environments such as the emergency department (ED). ASD may heighten adverse responses to sensory input or transitions, which can impose greater difficulty for a child to cope with situational demands. These problems can be amplified in the ED because of its busy and unpredictable nature, wait times, and bodily care. There is little literature documenting ED-based needs of children with ASD to inform clinical guidelines. The objective was to identify stakeholder perspectives in determining clinical priorities and recommendations to guide ED service delivery for children with ASD. METHODS: After qualitative interviews with children, parents, and health care providers conducted in a previous phase of this study, focus groups were convened with parents of children with ASD, ED clinicians, and ED administrators (total n = 60). Qualitative data were analyzed based on an interpretive description approach. RESULTS: Participants identified the ED and its delivery of care as insufficient to meet the unique needs of children with ASD. The following clinical priorities were identified: ASD-focused preparedness for ED procedures and processes, wait time management, proactive strategies for sedation and restraint, child-focused support, health care provider capacity building, post-ED follow-up resources, and transition planning to adult care. Heightened child- and family-centered care were strongly recommended.

Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder.

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.

Factors influencing autism spectrum disorder screening by community paediatricians.

BACKGROUND: In most cases, autism spectrum disorders (ASD) can be reliably diagnosed at two to three years of age. However, Canadian data reveal a median age at diagnosis of approximately four years. OBJECTIVE: To examine general paediatricians' practices regarding ASD screening and identify factors that influence decisions regarding the use of ASD screening tools. METHODS: Using a qualitative inquiry-based interpretive description approach, 12 paediatricians from four practice groups participated in four focus groups and one individual interview. These were conducted using semistructured interviews, digitally recorded and transcribed verbatim. RESULTS: Five main domains of themes were identified related to screening tool use: benefits; needs not addressed; elements that limit utility; elements that encourage utility; and implementation challenges. Factors influencing practice included availability of time, comfort with screening tool use, previous use and knowledge about specific tools. Systemic factors included knowledge and access to community resources, as well as the ability to provide support to the child and family. CONCLUSION: The results from the present study identified important factors that influence paediatric practice in ASD screening. As screening tools improve, it will be important to examine the implementation and effectiveness of screening tools and strategies for increased uptake. Future research will also need to attend to the practical needs of physicians and communities in the aim of earlier diagnosis and rapid access to interventional resources.

HISTORIQUE: Dans la plupart des cas, on peut diagnostiquer les troubles du spectre autistique (TSA) en toute fiabilité à l'âge de deux ou trois ans. Cependant, les données canadiennes révèlent un âge médian d'environ quatre ans au diagnostic. OBJECTIF: Examiner les pratiques du pédiatre général à l'égard du dépistage des TSA et déterminer les facteurs influant sur les décisions d'utiliser les outils de dépistage des TSA. MÉTHODOLOGIE: Au moyen d'une description interprétative et qualitative fondée sur des questions, 12 pédiatres issus de quatre groupes de pratique ont participé à quatre groupes de travail et à une entrevue individuelle. Ces rencontres ont pris la forme d'entrevues semi-structurées, conservées sur enregistrement numérique et transcrites textuellement. RÉSULTATS: L'utilisation des outils de dépistage était liée à cinq grands thèmes : les avantages, les limites, les éléments qui en limitent l'utilité, les éléments qui en favorisent l'utilité et les problèmes de mise en œuvre. Certains facteurs influaient sur la pratique : le temps disponible, le fait d'être à l'aise d'utiliser les outils de dépistage, l'utilisation antérieure d'outils particuliers et le fait de les connaître. Les facteurs systémiques incluaient la connaissance des ressources communautaires et leur accès, de même que la capacité de soutenir l'enfant et sa famille. CONCLUSION: Les résultats de la présente étude font ressortir d'importants facteurs qui influent sur le dépistage des TSA en pédiatrie. À mesure que les outils de dépistage s'amélioreront, il faudra en examiner la mise en œuvre et l'efficacité et adopter des stratégies pour en accroître l'utilisation. Il faudra également mener des recherches pour répondre aux besoins pratiques des médecins et des collectivités afin de favoriser un diagnostic plus précoce et un accès rapide aux ressources d'intervention.

Liver involvement in Langerhans cell histiocytosis.

Liver involvement in Langerhans cell histiocytosis (LCH) typically presents with hepatomegaly and other signs of liver dysfunction. We present an 11-month-old child having only minimally elevated liver enzymes as an indication of liver involvement. Using sonography as the initial diagnostic tool followed by MRI, LCH of the liver was revealed. A review of sonographic, CT, MRI and MR cholangiopancreatography findings in liver LCH is presented. We recommend that physicians consider sonography and MRI screening for liver involvement in patients with newly diagnosed LCH, as periportal involvement may be present with little or no liver function abnormality present, as in this patient.