Caring for Children with Developmental and Intellectual Disabilities

Bottom line recommendations for caring for children with developmental and intellectual disabilities in the ED. Published online: Feb 2020, v 1.1

A practical guide for health professionals to meet the needs of individuals with Autism Spectrum Disorder.

Bottom line recommendations for caring for children with developmental and intellectual disabilities in the ED. Published online: Feb 2020, v 1.1

Bottom line recommendations for caring for children with developmental and intellectual disabilities in the ED. Published online: Feb 2020, v 1.1

This executive summary is an overview of the common clinical challenges pediatric caregivers face when a child or adolescent presents with a psychiatric chief complaint or emergency.

This executive summary is an overview of the common clinical challenges pediatric caregivers face when a mental health condition may be an unclear or complicating factor in a non-mental health ED presentation.

Information for paramedics and emergency room staff on providing services to a person on the autism spectrum.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder affecting one in 59 children in the United States and other industrialized nations. In addition to behavior issues, ASD is associated with seizures, gastrointestinal concerns, sleep difficulties, and mental health issues that can profoundly impact the quality of life of children and their families. The American Academy of Pediatrics (AAP) has published updated guidelines for diagnosis and treatment of ASD.

Paediatricians and other primary care providers are well positioned to provide or coordinate ongoing medical and psychosocial care and support services for children with autism spectrum disorder (ASD). This statement provides recommendations and information on a range of interventions and resources, to help paediatric care providers optimize care for children with ASD and support their families. The management of ASD includes treating medical and psychiatric co-morbidities, behavioural and developmental interventions, and providing supportive social care services to enhance quality of life for affected children and families.

These guidelines have been framed after an amalgamation of expert guidelines across the globe, and existing practices in India, as outlined by experts in the field. Due to the lack of systematic research in the field of autism in India, the evidence of the said practices is not documented, which becomes a limitation of these guidelines. The good part is that India has an indigenous tool for assessment, which has been recommended by the Government of India, which we have attached as an Appendix 1.

Part 1 of the report discusses the common clinical issues that may be encountered in caring for children and adolescents presenting to the emergency department or primary care setting with a mental health condition or emergency.

Part 2 of the report discusses the challenges a pediatric clinician may face when evaluating patients with a mental health condition, which may be contributing to or a complicating factor for a medical or indeterminate clinical presentation.

The aim of this guideline is to provide clinical practice tips for the inpatient management of anxiety, and agitation in young people with developmental disabilities (including autism) who may require medical or surgical care.

Guideline based on a review of the existing literature & review of expert opinions for the management of agitated children in an emergency department setting.

These guidelines outline ways to optimize the clinical encounter, provide a framework for understanding & assessing the complex medical and mental health issues that arise for persons with intellectual disabilities, and provide a systematic way to evaluate the best approach to treatment and triage.

Individuals with an autism spectrum disorder (ASD) have a greater number of healthcare provider interactions than individuals without ASD. The obstacles to patient-centered care for this population, which include inflexibility of hospital environments, limited resources, and inadequate training, has been documented. However, there is little knowledge on efforts to address such concerns. A scoping review was conducted and the systematic search of the literature resulted in 23 relevant studies. The predominant themes include the use of data collection instruments, application of evidence-based practices and resources, and training of providers. The results of this review have implications for practitioners and future research to adapt and improve upon the provision of medical care for individuals with ASD across the lifespan.

Approximately 1 in 59 youth are currently diagnosed with autism spectrum disorder (ASD), a neurodevelopmental disorder. In comparison to typically developing peers, youth with ASD encounter hospitalization at higher rates due to their heightened health care needs. While visiting the hospital is a stressor for youth with neurotypical needs, the experience contains unique challenges for those with ASD. This systematic literature review highlights research that considers the psychosocial impact of the hospital environment on the coping and adjustment of youth with ASD. Specifically, the review focuses on recommendations and interventions that may be used by health care professionals while supporting this population as they encounter the health care system. Ninety-six articles were identified as meeting inclusion and exclusion criteria. The findings suggest that practicing clinicians should implement a wide variety of interventions for youth with ASD including diversion techniques, comfort positions, and picture schedules. Although there are published evidence-based interventions for supporting youth with ASD in the hospital, most clinicians lack ASD-specific training. This article concludes with recommendations for future research.

The presentation of children and adolescents with autism in the emergency department (ED) poses a unique set of challenges to clinicians and their teams, which have not yet been met. Children and adolescents with autism spectrum disorder (ASD) are more likely than their age and ethnically matched counterparts to visit both pediatric and general EDs and are more likely to use it for primary care complaints and dental care and to present for psychiatric concerns including suicidality. Despite the higher relative frequency, individuals with ASD demonstrate lower patient satisfaction, lower healthcare self-efficacy, and higher odds of unmet healthcare needs related to physical health, mental health, health maintenance, and vaccination. This can be ameliorated by simple strategies regarding communication, sensory and environmental modification, and distraction. After performing a literature review of existing evidence-based recommendations via PubMed as well as resources from autism advocacy and self-advocacy groups, we compiled a 4-step system: "See-Hear-Feel-Speak" an approach conducive to learning with the goal of enabling clinicians and their teams to facilitate patient-centered encounters with pediatric patients with ASD. The protocol meets the practicality requirements defined by published research.

Youth (aged 0-17 years) with ASD were up to 30 times more likely to present to the ED than youth without ASD. Individuals with ASD who visited the ED were older, more likely to have public insurance, and more likely to have nonurgent ED visits. For youth with ASD, up to 13% of visits were for behavioral or psychiatric problems, whereas for youth without ASD less than 2% were for psychiatric problems. ASD youth were more likely to present for externalizing problems or psychotic symptoms. Youth with ASD were also likely to have repeat visits to the ED and more likely to be admitted to a psychiatric unit or medical floor than youth without ASD.

The aim of this review was to provide an overview of existing research on patterns and predictors of emergency department use among persons with intellectual and developmental disabilities, to summarize what is known about the care received and to describe interventions to improve emergency care.

This article describes the challenges that inidividuals with autism spectrum disorder face when receiving treatment in crisis and emergency settings.

This review describes the behaviors of hospitalized children with autism spectrum disorder that health care providers find challenging.

This article explores the challenges that patients with autism spectrum disorders face when hospitalized and provides assessment strategies and plan-of-care suggestions for nursing caregivers.

This review developed strategies for providing nursing care for children with autism or autistic spectrum disorders that incorporated theories and knowledge from disciplines of nursing, child development, psychology, applied behavior analysis, and pain management.

Children with developmental disabilities require more medical experiences than typically-developing children and struggle to cooperate with healthcare encounters. Adaptive care plans, delivered by child life specialists, are individualized patient-centered plans created to address the challenges that children with developmental disabilities experience. The current study evaluated if adaptive care plans affect the psychosocial outcomes of children with ASD compared to those with other developmental disabilities. One-hundred and sixty children between 3 and 18 years of age (child's Mage = 8.10, SD = 3.75) participated. Although children with developmental disabilities who had adaptive care plans did not generally experience less psychosocial distress; children with ASD who had adaptive care plans experienced fewer challenges with anxiety and coping compared to children with ASD who did not have adaptive care plans.

Parents of children with ASD who had attended an Australian emergency department (ED; n = 421) completed a questionnaire relating to their experiences in the ED, including (1) child's reason for presentation and existing comorbidities, (2) quality of care during the visit (3) child's behaviour during visit, e.g. sensory responses to the ED environment, and disruptive behaviours. Children with comorbid ASD and intellectual disability were more likely to present with gastrointestinal issues and seizures, while those with comorbid ASD and oppositional defiant disorder were more likely to present with self-injury. ED staff awareness of ASD-related issues, including communication and expression of pain, were common difficulties for parents. The ED environment (e.g. lights, sounds, waiting areas), exacerbated child anxiety and led to disruptive behaviour.

The aim of this study was to develop a method for objectively assessing the delivery of care to children with autism spectrum disorder (ASD) in the emergency department (ED). The TCI reflects difficulty accomplishing core tasks necessary to complete an ED visit. Children with ASD have higher TCIs than neurotypical controls, which puts them at higher risk for care disruptions. Evaluation of initiatives to improve quality of care for children with ASD should focus not only on metrics of overall experience and satisfaction but also how these initiatives affect the ability to effectively administer care.

To characterise the key features and management of young people presenting to the emergency department (ED) with a mental health (MH) complaint and a known diagnosis of autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD).

Autism spectrum disorder (ASD) affects more than 1% of children in the United States, with the rate of new diagnoses climbing significantly in the last 15 years. Emergent conditions and subsequent visits to the emergency department (ED) can be particularly challenging for children with ASD, most of whom also have comorbidities in addition to their deficits in social communication and interaction. In the emergency setting, these conditions can cause a range of behaviors that result in challenges for health care providers and may result in suboptimal experiences for children with ASD and their families. We present the ED course of 3 children with ASD to illustrate these challenges, emphasize successful strategies, and highlight opportunities for improvement.

Patients with autism spectrum disorder (ASD) and other developmental delays represent a unique patient population. We described a cohort of children with ASD cared for in an emergency department (ED) setting and the specific health care resources used for their care. The care for children with ASD varied with age and health care issues. There was a high prevalence of psychiatric complaints, and many of these children were boarded in the ED waiting for an inpatient psychiatric bed. Those with psychiatric complaints were more likely to have multiple tests ordered and were more likely to be admitted.

Current childhood injury prevention guidance is anchored by a child's age. For example, children are considered at high risk for falls at ages 4 years and less, and guidance for prevention focuses on these ages. However, these guidelines may not be adequate for children with autism spectrum disorders (ASD). Analyses suggest that unintentional home injury prevention for children with ASD may require prevention guidance extended through older ages.

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. 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.

In order to best respond to an emergency situation, professionals need to have an understanding about Autism Spectrum Disorder (ASD) and techniques that will ensure proper care. The purpose of this study was to determine the knowledge and confidence of EMS personnel on interacting and treating an individual with ASD. Emergency Medical Technicians (EMT), and Paramedics were surveyed on their knowledge of ASD; familiarity or experience with ASD, and level of comfort responding to emergencies involving an individual with ASD. The results found that autism-specific training and resources were associated with higher comfort levels, but not knowledge. It was also determined that newer and younger professionals had higher knowledge and comfort when compared to the more experienced and older professionals.

To determine predictors of emergency department (ED) visits in a cohort of adolescents and adults with autism spectrum disorder (ASD). A combination of individual and contextual variables may be important for targeting preventative community-based supports for individuals with ASD and their families. In particular, attention should be paid to how caregiver supports, integrative crisis planning and community-based services may assist in preventing or minimising ED use for this vulnerable population.

This study aims to use nationally-representative emergency department data to characterize injury-related ED visits among youth with autism spectrum disorder.

This qualitative study utilized a grounded theory approach and analyzed data from parents and health care providers related to autism spectrum disorder disclosure within two Canadian pediatric emergency departments.

The objective of this study was to identify stakeholder perspectives in determining clinical priorities and recommendations to guide emergency department service delivery for children with autism spectrum disorder.

In this study, parents and their children with autism spectrum disorder shared their perspectives on emergency department care.

This study aimed to characterize the perspectives of health professionals who care for children with autism spectrum disorder in the emergency department, and to determine what strategies could optimize care.

The purpose of this study was to understand the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers, in order to inform hospital-based care.

The aim of this study was to identify parent and provider perspectives on barriers and facilitators to procedural care for children with autism spectrum disorders.

This study describes the development of education materials on ASD and the results of training of emergency medical services and emergency department personnel.

This study aimed to examine the prevalence and characteristics of psychiatry-related emergency department visits among children with autism spectrum disorder, including the specific reason for visit, as well as the influence of insurance type.

This study examined the difference in the frequency and type of injury for children with autism and pervasive developmental disorder compared with typically developing peers.