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André TG, Moreira NG, Lucca MD, Dutra HS, Carlos DM, Fernandez-Garcia AO, Nascimento LC. Strategies used by the nursing team in the care of autistic children and adolescents: An integrative review. J Pediatr Nurs 2025:S0882-5963(25)00110-1. [PMID: 40221363 DOI: 10.1016/j.pedn.2025.04.006] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/23/2024] [Revised: 04/04/2025] [Accepted: 04/05/2025] [Indexed: 04/14/2025]
Abstract
PROBLEM Nurses play a crucial role in monitoring children's growth and development and play a vital role in healthcare facilities, where their presence is constant, providing uninterrupted care and support. The aim of this review to identify the strategies used by the nursing team in caring for autistic children and adolescents METHOD: Integrative literature review, developed in stages, which included: identification of the problem, systematic literature search, quality assessment, data analysis, and presentation of the results. The searches were conducted in seven databases: PubMed, CINAHL, Scopus, Scielo, Embase, Lilacs, and Bdenf, and included articles published in English, Portuguese, and Spanish with no restrictions on period. Controlled descriptors from the Medical Subject Headings (MeSH), CINAHL titles, synonyms, and keywords were used, combined with Boolean operators AND and OR. RESULTS The final sample included six articles. Analysis of the studies identified four main strategies adopted by the nursing team in caring for autistic children and adolescents: communication; collaboration with parents and use of sensory objects; preparation of the environment and time management; and, finally, continuing education for professionals FINAL CONSIDERATIONS: This study highlights the importance of including autism in the training of future nurses, emphasizing the need for specific preparation to deal with atypical children and adolescents. The strategies identified provide a practical guide to qualifying the care and support offered to this population IMPLICATIONS FOR PRACTICE: The implementation of these strategies can also help improve the emotional well-being of patients and their families, fostering a holistic approach to care.
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Affiliation(s)
- Tatiane Geralda André
- Department of Maternal-Infant and Public Health Nursing, University of São Paulo at Ribeirão Preto College of Nursing, Ribeirão Preto, Brazil
| | | | - Milena de Lucca
- Department of Maternal-Infant and Public Health Nursing, University of São Paulo at Ribeirão Preto College of Nursing, Ribeirão Preto, Brazil.
| | | | - Diene Monique Carlos
- Department of Maternal-Infant and Public Health Nursing, University of São Paulo at Ribeirão Preto College of Nursing, Ribeirão Preto, Brazil.
| | | | - Lucila Castanheira Nascimento
- Department of Maternal-Infant and Public Health Nursing, University of São Paulo at Ribeirão Preto College of Nursing, Ribeirão Preto, Brazil.
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Litwin S, Sellen K. Designing a Sensory Kit to Improve the Environment for Children with Autism Spectrum Disorder in the Pediatric Emergency Department. J Autism Dev Disord 2023; 53:3369-3379. [PMID: 35834047 DOI: 10.1007/s10803-022-05651-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/15/2022] [Indexed: 11/29/2022]
Abstract
Children with autism spectrum disorder (ASD) have more frequent use of healthcare services, including visits to the emergency department (ED). Medical care for children with ASD can be adversely affected by the highly stimulating environment of the ED. In this study, we gained insights from stakeholders with lived experience (parents of children with ASD, children with ASD, and ED healthcare providers) to create and implement a sensory equipment kit. The kit was evaluated and iteratively improved based on observations of children using the sensory equipment, satisfaction surveys from their parents, and interviews with healthcare providers in the ED. Findings from this study can be used to guide other EDs in creating their own ASD sensory kit.
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Affiliation(s)
- Sasha Litwin
- Division of Emergency Medicine, Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada.
| | - Kate Sellen
- Faculty of Design, Ontario College of Art and Design University, 100 McCaul Street, Toronto, ON, M5T 1W1, Canada
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Pillai J, Dunn K, Efron D. Parent-reported factors associated with the emergency department presentation of children and adolescents with autism spectrum disorder and/or intellectual disability with behaviours of concern: a qualitative study. Arch Dis Child 2023; 108:264-270. [PMID: 36521861 DOI: 10.1136/archdischild-2022-325002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/13/2022] [Accepted: 12/02/2022] [Indexed: 12/23/2022]
Abstract
OBJECTIVE We aimed to examine the parent-reported factors contributing to the emergency department (ED) presentation of children and adolescents with autism spectrum disorder (autism) and/or intellectual disability (ID) with behaviours of concern (BOC). DESIGN Qualitative study using semistructured interviews. Data were analysed phenomenologically using inductive thematic analysis. SETTING The ED of the Royal Children's Hospital, Melbourne, Australia, a tertiary paediatric hospital. PARTICIPANTS 14 parents and/or carers of children and adolescents with autism and/or ID who presented to ED for management of BOC. RESULTS Three themes emerged from the data: (1) Parents and carers had difficulties navigating the healthcare system and accessing appropriate community supports prior to their child's ED presentation; (2) Families presented to ED due to an inability to manage risk and/or contain their child's behaviour, compounded by carer burn-out; (3) Presentation to ED was considered a last resort option for many families. The ED was generally unable to assist families in the ongoing management of their child's BOC, leading to a potential need to re-present in future. CONCLUSIONS This study highlights the need for families of children with autism and ID and associated BOC to have improved access to appropriately skilled community health professionals, allowing their BOC to be addressed as they emerge rather than at crisis point. The findings additionally highlight the need for changes to the delivery of acute care in the management of BOC, to minimise patient distress and maximise safe and satisfactory patient outcomes.
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Affiliation(s)
- Jasmine Pillai
- Department of General Medicine, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia
| | - Karen Dunn
- Department of Emergency Medicine, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia
| | - Daryl Efron
- Department of General Medicine, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia
- Centre for Community Child Health, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
- Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia
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Bilginer Ç, Yıldırım S, Törenek R, Özkaya AK. Patients with autism in the emergency department: cause of admissions and challenges. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2021; 69:710-716. [PMID: 37547546 PMCID: PMC10402859 DOI: 10.1080/20473869.2021.2009996] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/15/2021] [Revised: 11/19/2021] [Accepted: 11/19/2021] [Indexed: 08/08/2023]
Abstract
Objective: This study aims to understand the presentations of autism spectrum disorder (ASD) patients in a tertiary hospital's emergency department (ED) in Turkey, and the difficulties of families face in the ED. Method: Clinical characteristics of ASD patients who presented to the ED between 1 January 2015 and 15 November 2020 were obtained by retrospective file review. The caregivers of the patients who had presented to the ED in 2020 were interviewed by a phone call. Results: There were 740 applications of 224 patients (192 boys, 32 girls). Almost half of the patients were between 0 and 5 years old. Respiratory problems were the most common cause of admissions in all age groups. The second common reasons for ED visits were gastrointestinal problems in 0-5 years old, traumatic injuries/poisoning in 6-12 years old, and epilepsy/syncope in 13-17 years old. Psychiatric problems were less common (2.7%) than other reasons for admission. The most challenging issue for children was "the crowded waiting area, and the long waiting period" and followed by "physical restraint imposed on the child," "noise," and "bright light." Conclusion: As the clinicians' awareness and use of more accurate diagnostic tools have increased, the ASD prevalence has gradually increased. To increase the quality of healthcare services for these patients, awareness studies and new interventions are needed.
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Affiliation(s)
- Çilem Bilginer
- Department of Child and Adolescent Psychiatry, Faculty of Medicine, Karadeniz Technical University, Trabzon, Turkey
| | - Selman Yıldırım
- Department of Child and Adolescent Psychiatry, Faculty of Medicine, Karadeniz Technical University, Trabzon, Turkey
| | - Rümeysa Törenek
- Department of Child and Adolescent Psychiatry, Faculty of Medicine, Karadeniz Technical University, Trabzon, Turkey
| | - Ahmet Kağan Özkaya
- Department of Child Emergency, Faculty of Medicine, Karadeniz Technical University, Trabzon, Turkey
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Mannenbach MS, Passe RL, Lovik KK, Larson EM, Laudon SM, Naeve A, Bellolio MF. Caring for Children With Autism in an Emergency Department Setting. Pediatr Emerg Care 2021; 37:e977-e980. [PMID: 33170575 DOI: 10.1097/pec.0000000000001844] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
OBJECTIVE 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. METHODS This is an observational study of consecutive children (<18 years) with ASD presenting for ED care. Comparisons of interest were evaluated using Wilcoxon rank sum and χ2 tests. Odds ratios (ORs) are reported with 95% confidence intervals (CIs). RESULTS There were 238 ED visits over a 9-month period among 175 children. Median age was 9 years, and 62% were male. Reasons for ED visit were medical (51%), psychiatric (18%), injury/assault/trauma (16%), neurological (11%), and procedure related (4%.)Children with psychiatric complaints had longer lengths of stay than those with other chief complaints (P < 0.0001; OR, 5.8; CI, 2.8-11.9) and were more likely to have urine (OR, 8.5; CI, 3.9-18.3) and blood work ordered (OR, 2.5; CI, 1.2-4.9) and less likely to have x-rays ordered (OR, 0.10; CI, 0.02-0.44).Eighteen (8%) children received sedation. None required physical restraint. A total of 30% were admitted to the hospital. Those with psychiatric complaints were more likely to be admitted (54.8% vs 24.5%; OR, 3.7; CI, 1.9-7.4) than those with other chief complaints. CONCLUSIONS 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.
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Kwolek HA, Bray A, Bunyea AM, DeMaio E, Bray M, Ottone‐Cross K. Assessment of students with autism spectrum disorder for emergency response planning. PSYCHOLOGY IN THE SCHOOLS 2021. [DOI: 10.1002/pits.22625] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Affiliation(s)
- Heather A. Kwolek
- Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
- UConn Center for Excellence in Developmental Disabilities UConn Health Farmington Connecticut USA
| | - Adeline Bray
- Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
| | - Alyssa M. Bunyea
- Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
| | - Erin DeMaio
- Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
- UConn Center for Excellence in Developmental Disabilities UConn Health Farmington Connecticut USA
| | - Melissa Bray
- Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
- UConn Center for Excellence in Developmental Disabilities UConn Health Farmington Connecticut USA
| | - Karen Ottone‐Cross
- Dr. Bonnie G. Metcalf School of Education School Psychology, California Baptist University Riverside California USA
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So P, Wierdsma AI, van Boeijen C, Vermeiren RR, Mulder NC. Gender differences between adolescents with autism in emergency psychiatry. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2021; 25:2331-2340. [PMID: 34080460 DOI: 10.1177/13623613211019855] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
LAY ABSTRACT Among adolescents seen for psychiatric emergency consultation, the percentage of adolescents with autism is increasing over the years. This applies even more to girls than to boys. We collected data of 1378 adolescents aged 12-18 years who were seen for urgent consultation by mobile psychiatric emergency services in the Netherlands. Among these, there were 64 autistic girls and 125 autistic boys. We wanted to know more about differences in problems between autistic and typical developing adolescents in crisis, both to prevent crisis and to improve services. The percentage of adolescents with autism increased over the years studied. Autistic adolescents experienced more severe impairment in functioning compared to typically developing adolescents. Compared to other adolescents, both boys and girls on the autism spectrum were diagnosed less frequently with mood disorders, behavioral disorders, relational problems, and abuse. Autistic girls had a higher suicide risk and suffered more often from anxiety disorders than autistic boys, while autistic boys had a longer history of problems. Outpatient care for children with autism should include easy access to specialized professionals who aim to reduce anxiety and help young people with autism to cope with the challenges of adolescence. Because possibly signs were missed during the emergency consultation, we recommend that as part of the routine procedure in crisis situations adolescents with autism are asked about mood and behavioral problems explicitly, as well as about negative life events.
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Affiliation(s)
- Pety So
- Youz-Center for Youth Mental Healthcare, The Netherlands.,Parnassia Psychiatric Institute, The Netherlands
| | | | | | - Robert Rjm Vermeiren
- Youz-Center for Youth Mental Healthcare, The Netherlands.,Leiden University Medical Center, The Netherlands
| | - Niels Cl Mulder
- Parnassia Psychiatric Institute, The Netherlands.,Erasmus University Medical Center, The Netherlands
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Al-Beltagi M. Autism medical comorbidities. World J Clin Pediatr 2021; 10:15-28. [PMID: 33972922 PMCID: PMC8085719 DOI: 10.5409/wjcp.v10.i3.15] [Citation(s) in RCA: 127] [Impact Index Per Article: 31.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/23/2021] [Revised: 02/12/2021] [Accepted: 03/17/2021] [Indexed: 02/06/2023] Open
Abstract
Medical comorbidities are more common in children with autism spectrum disorders (ASD) than in the general population. Some genetic disorders are more common in children with ASD such as Fragile X syndrome, Down syndrome, Duchenne muscular dystrophy, neurofibromatosis type I, and tuberous sclerosis complex. Children with autism are also more prone to a variety of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headaches, and congenital abnormalities of the nervous system. Besides, sleep disorders are a significant problem in individuals with autism, occurring in about 80% of them. Gastrointestinal (GI) disorders are significantly more common in children with ASD; they occur in 46% to 84% of them. The most common GI problems observed in children with ASD are chronic constipation, chronic diarrhoea, gastroesophageal reflux and/or disease, nausea and/or vomiting, flatulence, chronic bloating, abdominal discomfort, ulcers, colitis, inflammatory bowel disease, food intolerance, and/or failure to thrive. Several categories of inborn-errors of metabolism have been observed in some patients with autism including mitochondrial disorders, disorders of creatine metabolism, selected amino acid disorders, disorders of folate or B12 metabolism, and selected lysosomal storage disorders. A significant proportion of children with ASD have evidence of persistent neuroinflammation, altered inflammatory responses, and immune abnormalities. Anti-brain antibodies may play an important pathoplastic mechanism in autism. Allergic disorders are significantly more common in individuals with ASD from all age groups. They influence the development and severity of symptoms. They could cause problematic behaviours in at least a significant subset of affected children. Therefore, it is important to consider the child with autism as a whole and not overlook possible symptoms as part of autism. The physician should rule out the presence of a medical condition before moving on to other interventions or therapies. Children who enjoy good health have a better chance of learning. This can apply to all children including those with autism.
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Affiliation(s)
- Mohammed Al-Beltagi
- Department of Pediatrics, University Medical Center, King Abdulla Medical City, Arabian Gulf University, Manama P.O. Box 26671, Bahrain, Bahrain
- Department of Pediatrics, Faculty of Medicine, Tanta University, Tanta 0000000, Al Gharbia, Egypt
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9
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Al-Beltagi M. Autism medical comorbidities. World J Clin Pediatr 2021. [PMID: 33972922 DOI: 10.5409/wjcp.v10.i3.15.] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/20/2022] Open
Abstract
Medical comorbidities are more common in children with autism spectrum disorders (ASD) than in the general population. Some genetic disorders are more common in children with ASD such as Fragile X syndrome, Down syndrome, Duchenne muscular dystrophy, neurofibromatosis type I, and tuberous sclerosis complex. Children with autism are also more prone to a variety of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headaches, and congenital abnormalities of the nervous system. Besides, sleep disorders are a significant problem in individuals with autism, occurring in about 80% of them. Gastrointestinal (GI) disorders are significantly more common in children with ASD; they occur in 46% to 84% of them. The most common GI problems observed in children with ASD are chronic constipation, chronic diarrhoea, gastroesophageal reflux and/or disease, nausea and/or vomiting, flatulence, chronic bloating, abdominal discomfort, ulcers, colitis, inflammatory bowel disease, food intolerance, and/or failure to thrive. Several categories of inborn-errors of metabolism have been observed in some patients with autism including mitochondrial disorders, disorders of creatine metabolism, selected amino acid disorders, disorders of folate or B12 metabolism, and selected lysosomal storage disorders. A significant proportion of children with ASD have evidence of persistent neuroinflammation, altered inflammatory responses, and immune abnormalities. Anti-brain antibodies may play an important pathoplastic mechanism in autism. Allergic disorders are significantly more common in individuals with ASD from all age groups. They influence the development and severity of symptoms. They could cause problematic behaviours in at least a significant subset of affected children. Therefore, it is important to consider the child with autism as a whole and not overlook possible symptoms as part of autism. The physician should rule out the presence of a medical condition before moving on to other interventions or therapies. Children who enjoy good health have a better chance of learning. This can apply to all children including those with autism.
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Affiliation(s)
- Mohammed Al-Beltagi
- Department of Pediatrics, University Medical Center, King Abdulla Medical City, Arabian Gulf University, Manama P.O. Box 26671, Bahrain, Bahrain
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10
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Corsano P, Cinotti M, Guidotti L. Paediatric nurses' knowledge and experience of autism spectrum disorders: An Italian survey. J Child Health Care 2020; 24:486-495. [PMID: 31496265 DOI: 10.1177/1367493519875339] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Hospitalization of children with autism spectrum disorders (ASDs) is a challenge for paediatric nurses. The literature reveals a lack of knowledge among the clinical and behavioural characteristics of autism. The aim of the study is to investigate the knowledge of paediatric nurses about ASDs and their experience with children with ASD. Ninety-three nurses completed Knowledge About Childhood Autism Among Healthcare Workers questionnaire, a sociodemographic questionnaire and an open-ended questionnaire to evaluate the experience of nurses. Findings showed that nurses have a basic knowledge of ASD, except for comorbidity and onset of the ASD, in which they obtained lower scores. Older nurses and those who had more experience in a paediatric ward or with children with ASD showed higher scores. Analysis of the content of open-ended questionnaire showed that nurses have difficulties in managing the relationship with children with ASD, and that they wonder about how to improve it, seeking useful strategies for this purpose. During interactions, nurses experience mixed feelings such as sadness, suffering, uneasiness, inadequacy, displeasure, embarrassment and tenderness. They declare the need for more knowledge about ASD. They would like to improve their own capacity for interactions with these children, also through training.
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Affiliation(s)
- Paola Corsano
- Department of Humanities, Social Sciences and Cultural Industries, University of Parma, Parma, Italy
| | | | - Laura Guidotti
- Department of Humanities, Social Sciences and Cultural Industries, University of Parma, Parma, Italy
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Cooke E, Smith V, Brenner M. Parents' experiences of accessing respite care for children with Autism Spectrum Disorder (ASD) at the acute and primary care interface: a systematic review. BMC Pediatr 2020; 20:244. [PMID: 32443974 PMCID: PMC7243332 DOI: 10.1186/s12887-020-02045-5] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/26/2019] [Accepted: 03/24/2020] [Indexed: 11/26/2022] Open
Abstract
BACKGROUND Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care services for children with an ASD can often be a daunting and exhaustive process, with parents sometimes forced to access acute hospital services as an initial point of contact for respite care or in a crisis situation. To gain an in-depth understanding of accessing respite care for children with an ASD, from the perspectives of parents, a systematic review of the evidence on parent's experiences and views of respite care for children with an ASD at the acute and primary interface was undertaken. METHODS Pubmed, Embase, CINAHL and PsycINFO were systematically searched. Studies identified as relevant based on predetermined eligibility criteria were selected for inclusion. The search strategy also targeted unpublished studies and grey literature. Qualitative data and qualitative components of mixed method studies that represented the experiences of parents accessing respite care for children with an ASD were eligible for inclusion. A meta-aggregative approach was used during data synthesis. RESULTS Database searching elicited 430 records of which 291 studies remained after removal of duplicates. These 291 studies were screened for title and abstract by two reviewers resulting in 31 studies to be screened at full text and assessed for eligibility. Six studies met the inclusion criteria and a further additional study also met the inclusion criteria during a manual search. As a result, 7 studies were selected for the review as set out in Fig. 1. CONCLUSION In the absence of appropriate services and defined pathways to support services such as respite care, overwhelmed parents and community providers of mental health resources may not be in a position to meet the specific needs of children with an ASD and their families which may be contributing to a direct increase in hospitalizations. This systematic review identified a number of barriers to respite care, of which the findings can be used to inform future service development and further research. Knowledge of parental experiences in caring for a child with an ASD is vital in addressing the need and type of respite care required for children with an ASD. SYSTEMATIC REVIEW REGISTRATION PROSPERO CRD42018106629.
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Hand BN, Boan AD, Bradley CC, Charles JM, Carpenter LA. Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group. Autism Res 2019; 12:1129-1138. [PMID: 31081200 DOI: 10.1002/aur.2124] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/13/2018] [Revised: 04/23/2019] [Accepted: 04/25/2019] [Indexed: 01/12/2023]
Abstract
Adolescents with autism spectrum disorder (ASD) and/or intellectual disability (ID) may utilize the emergency department (ED) more frequently than individuals in the general population. This study compared ED utilization and charges during adolescence among four groups of individuals: ASD-only, ASD + ID, ID-only, and a population comparison (PC) group. ED visits occurring during age 12-17 years were examined to identify non, low, and high utilizers. Logistic regression was used to compare groups on the odds of having at least one ED visit during adolescence. Generalized linear models were used to compare groups on number of ED visits and total charges, stratified by low and high ED utilization. Descriptive examination of presenting diagnoses was performed. Individuals with ID, with or without co-occurring ASD, were significantly more likely to have at least one ED visit during adolescence. Among high ED utilizers, the ID-only group had the most frequent ED visits but had significantly lower charges than the ASD-only group. Individuals with ASD-only and ASD + ID differed from the ID-only and PC groups in presenting diagnoses. No differences between groups in number of ED visits or charges were observed among low utilizers. ID, with or without ASD, increased the odds of visiting the ED during adolescence. Adolescents with ID-only had the most frequent ED visits, but individuals with ASD-only had the highest ED charges and tended to be seen for psychiatric concerns. Further research is warranted to better characterize and meet the healthcare needs of individuals with ASD and/or ID during adolescence. Autism Res 2019, 12: 1129-1138. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Frequent emergency department (ED) visits strain medical resources and are costlier than primary and urgent care. Our findings show that adolescents with intellectual disability (ID) may use the ED frequently for nonurgent conditions. Adolescents with autism spectrum disorder, without ID, use the ED less frequently but incur higher charges. Further research is needed to understand how to meet the unique needs of these populations in primary care to prevent overuse of the ED.
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Affiliation(s)
| | - Andrea D Boan
- Medical University of South Carolina, Charleston, South Carolina
| | | | - Jane M Charles
- Medical University of South Carolina, Charleston, South Carolina
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13
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See-Hear-Feel-Speak: A Protocol for Improving Outcomes in Emergency Department Interactions With Patients With Autism Spectrum Disorder. Pediatr Emerg Care 2019; 35:157-159. [PMID: 30702545 DOI: 10.1097/pec.0000000000001734] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/03/2023]
Abstract
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.
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Gupta N, Brown C, Deneke J, Maha J, Kong M. Utilization of a Novel Pathway in a Tertiary Pediatric Hospital to Meet the Sensory Needs of Acutely Ill Pediatric Patients. Front Pediatr 2019; 7:367. [PMID: 31555627 PMCID: PMC6742947 DOI: 10.3389/fped.2019.00367] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/13/2019] [Accepted: 08/22/2019] [Indexed: 11/13/2022] Open
Abstract
Objective: To identify pediatric patients with sensory sensitivities during a hospital visit, and to implement a clinical pathway that can meet their sensory needs. The goal is to remove barriers to care delivery that is related to the sensory need for pediatric patients who present with an acute medical illness. Methods: The clinical pathway (identified as 'Sensory Pathway') was developed as a joint effort between key stakeholders within the community and medical providers. The pathway was conducted in a tertiary pediatric hospital from September 2016-April 2019. The main components of this pathway included- 1. Staff training; 2. Provision of sensory toolkits and story board; 3. Early collaboration with allied professionals; and 4. Early and continuous parental involvement. The Sensory Pathway was implemented first in the emergency department, followed by inpatient units. Patients triggered the pathway through caregiver or staff identification. Demographic of patients who triggered the pathway was extracted. A detailed qualitative analysis of any parents' feedback received was performed. Results: A cohort of patients with sensory needs was identified amongst pediatric patients who presented to the hospital with an acute illness. The most common comorbidity associated with sensory sensitivity/need was Autism Spectrum Disorder (48%), followed by cerebral palsy (22.8%) and Attention-Deficit/Hyperactivity Disorder (16%). 1337 patients (51.8%) had a single comorbidity while 45.9% patients had more than one comorbidity. Only 1.3% patients had a known diagnosis of sensory processing disorder. The pathway was triggered in 2,580 patient visits with 1643 patients and 937 repeat visits. The vast majority of patients who triggered the pathway had a medical presenting complaint (vs. behavioral). The following themes emerged from the parents' feedback: 1. Additional help received specific to the child's sensory needs; 2. Feeling of comfort; and 3. Improved overall experience. Conclusion: The Sensory Pathway identified a unique profile of pediatric patients who have sensory needs during their hospital stay. The pathway was successfully implemented for children with sensory need in our hospital across a wide range of demographic and with varied medical illness.
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Affiliation(s)
- Neha Gupta
- Department of Pediatrics, University of Alabama at Birmingham, CPPI Suite, Birmingham, AL, United States
| | - Chelsea Brown
- Children's of Alabama, Birmingham, AL, United States
| | | | | | - Michele Kong
- Department of Pediatrics, University of Alabama at Birmingham, CPPI Suite, Birmingham, AL, United States
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Abstract
OBJECTIVE The purpose of this study was to identify factors that predict parent satisfaction (PS) with their child with autism spectrum disorder (ASD)'s visit to a hospital emergency department (ED) or urgent care (UC) center. METHODS Parents recruited through a national database whose child (3-21 years; N = 378) with ASD had been treated in an ED/UC center within the previous 3 years completed an anonymous on-line questionnaire. They answered questions about whether they were satisfied overall with the visit and the care provided, their demographics, patient characteristics, their expectations and preparation for the visit, and the ED/UC center experience itself, including their observations of staff interpersonal and communication skills (ICSs) and behaviors, and whether the patient was disruptive (D). Multiple correspondence analysis (MCA) was used to demonstrate the relative effects of individual variables on PS. RESULTS Among the 10 most important determinants of PS with the visit were the 9 assessed staff ICS behaviors. These were followed by shorter than expected waiting time and the patient not being disruptive (ND) during the visit. PS was not associated with any of the 3 measures of patient disability severity (ASD subtype, communicative competence, or restrictiveness of educational placement), whether the patient is hyperreactive to sensory stimuli, reason for the visit, or parent's education. CONCLUSION PS with an ED/UC center visit when the patient has autism depends mostly on the quality of staff interactions with the patient and family. It is important for ED/UC center administrators to ensure that staff understand how to interact and communicate effectively with patients with ASD and their families.
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Lunsky Y, Tint A, Weiss JA, Palucka A, Bradley E. A review of emergency department visits made by youth and adults with autism spectrum disorder from the parent perspective. ADVANCES IN AUTISM 2018. [DOI: 10.1108/aia-08-2017-0019] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
Purpose
Past research has shown individuals with autism spectrum disorder (ASD) visit hospital emergency departments (ED) at high rates. In order to assist individuals with ASD, their families and health care providers to improve ED care, it is important to understand these encounters in greater detail. The purpose of this paper is to provide a descriptive summary of the ED experiences of adolescents and adults with ASD, from the perspective of their families.
Design/methodology/approach
A subset of data from a larger prospective cohort study was used. Specifically, 46 parents of adolescents and adults with ASD provided details concerning 49 ED visits over a 12-month period.
Findings
Results suggest a range of presentations requiring ED use, and also diverse profiles of those with ASD who visited the ED, in terms of age, gender, and ASD severity. While overall degree of satisfaction with care received in the ED was high, parents provided recommendations to improve the ED experiences for their family members with ASD.
Originality/value
This is the first study to provide detailed accounts of ED visits from the perspective of parents of adolescents and adults with ASD. Families play an important role in the lives of individuals with ASD across the lifespan and it is important to include their perspective to improve hospital-based care for those with ASD.
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A Profile on Emergency Department Utilization in Adolescents and Young Adults with Autism Spectrum Disorders. J Autism Dev Disord 2017; 47:347-358. [PMID: 27844247 DOI: 10.1007/s10803-016-2953-8] [Citation(s) in RCA: 69] [Impact Index Per Article: 8.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/20/2022]
Abstract
There has been an increase in utilization of the Emergency Department (ED) in individuals with autism spectrum disorder (ASD) which may reflect a deficit of services (Green et al., Journal of the American Academy of Child and Adolescent Psychiatry 40(3):325-332, 2001; Gurney et al., Archives of Pediatric and Adolescent Medicine 160:825-830, 2006; Leichtman et al., American Journal of Orthopsyhciatry 72(2):227-235, 2001). The current study examined the rates of ED utilization between 2005 and 2013 in ASD youth 12- to 21-years-old. Adolescents with ASD accessed ED services four times as often as adolescents without ASD. Older adolescents and those living in rural areas showed a significant increase in ED visits over time. Post hoc analysis revealed increased ED utilization for females and behavioral health ED services over time. Better access to and greater understanding of services for adolescents with ASD is a critical need.
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Epidemiology of Injury-Related Emergency Department Visits in the US Among Youth with Autism Spectrum Disorder. J Autism Dev Disord 2017; 46:2756-2763. [PMID: 27241347 DOI: 10.1007/s10803-016-2820-7] [Citation(s) in RCA: 22] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/21/2022]
Abstract
Several reports suggest children with autism spectrum disorder (ASD) are more likely to be seen for injury-related ED visits; however, no nationally representative study has examined this question. Using data from the 2008 Nationwide Emergency Department Sample, over a quarter of all visits among those with ASD were related to injury. In the multivariate analyses, the odds of an injury-related visit was 54 % greater among those with ASD compared to youth with intellectual disability (ID), but 48 % less compared to youth without ID or ASD. Compared to all other pediatric injury-visits in the US, visits among children with ASD were more likely to be due to self-inflicted injury and poisoning and were more likely to result in hospitalization (all p < 0.001).
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Lunsky Y, Weiss JA, Paquette-Smith M, Durbin A, Tint A, Palucka AM, Bradley E. Predictors of emergency department use by adolescents and adults with autism spectrum disorder: a prospective cohort study. BMJ Open 2017; 7:e017377. [PMID: 28720619 PMCID: PMC5541491 DOI: 10.1136/bmjopen-2017-017377] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023] Open
Abstract
OBJECTIVES To determine predictors of emergency department (ED) visits in a cohort of adolescents and adults with autism spectrum disorder (ASD). DESIGN Prospective cohort study. SETTING Community-based study from Ontario, Canada. PARTICIPANTS Parents reported on their adult sons and daughters with ASD living in the community (n=284). MAIN OUTCOME MEASURES ED visits for any reason, ED visits for medical reasons and ED visits for psychiatric reasons over 1 year. RESULTS Among individuals with ASD, those with ED visits for any reason were reported to have greater family distress at baseline (p<0.01), a history of visiting the ED during the year prior (p<0.01) and experienced two or more negative life events at baseline (p<0.05) as compared with those who did not visit the ED. Unique predictors of medical versus psychiatric ED visits emerged. Low neighbourhood income (p<0.01) and living in a rural neighbourhood (p<0.05) were associated with medical but not psychiatric ED visits, whereas a history of aggression (p<0.05) as well as being from an immigrant family (p<0.05) predicted psychiatric but not medical emergencies. CONCLUSIONS 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.
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Affiliation(s)
- Yona Lunsky
- Centre for Addiction and Mental Health, Toronto, Canada
- Department of Psychiatry, University of Toronto, Toronto, Canada
| | | | - Melissa Paquette-Smith
- Department of Psychology, University of Toronto Mississauga, Mississauga, Ontario, Canada
| | - Anna Durbin
- Centre for Addiction and Mental Health, Toronto, Canada
- Department of Psychiatry, University of Toronto, Toronto, Canada
- Research and Evaluation, Canadian Mental Health Association–Toronto Branch, Toronto, Canada
| | - Ami Tint
- Centre for Addiction and Mental Health, Toronto, Canada
- Department of Psychology, York University, Toronto, Canada
| | - Anna M Palucka
- Centre for Addiction and Mental Health, Toronto, Canada
- Department of Psychiatry, University of Toronto, Toronto, Canada
| | - Elspeth Bradley
- Department of Psychiatry, University of Toronto, Toronto, Canada
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Muskat B, Greenblatt A, Nicholas DB, Ratnapalan S, Cohen-Silver J, Newton AS, Craig WR, Kilmer C, Zwaigenbaum L. Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2016; 20:986-994. [DOI: 10.1177/1362361315621520] [Citation(s) in RCA: 17] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
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.
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Zwaigenbaum L, Nicholas DB, Muskat B, Kilmer C, Newton AS, Craig WR, Ratnapalan S, Cohen-Silver J, Greenblatt A, Roberts W, Sharon R. Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder. J Autism Dev Disord 2016; 46:1725-36. [DOI: 10.1007/s10803-016-2703-y] [Citation(s) in RCA: 29] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/22/2022]
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