The knowledge of the nursing team about autistic disorders in children in the light of the human caring theory / O conhecimento da equipe de enfermagem acerca dos transtornos autísticos em crianças à luz da teoria do cuidado humano

INTRODUCTION: Autistic Spectrum Disorders (ASD) or Autistic Disorders (AD) are complex neurodevelopmental disorders characterized by social communication deficits, social interaction, and nonverbal behavior in multiple contexts. OBJECTIVE: To analyze the knowledge of the nursing team about ASD and the approach to the subject during professional training based on the principles addressed in the Human Caring Theory. METHODS: Descriptive study with a qualitative approach, adopting the Human Caring Theory by Jean Watson as a theoretical reference. Ten semi-structured interviews were conducted with professionals from the nursing team of a Primary Health Center in the ABC Region from São Paulo State, Brazil, in May 2019. Their knowledge about ASD in children was assessed by a 7-question guiding script. Data analysis was performed using Content Analysis Method. RESULTS: Four main categories were elaborated: the care based on humanistic-altruistic values, the cultivation of sensitivity for self and the other, the valorization of the feelings expression and the interpersonal relationship, the promotion of intra and interpersonal teaching-learning process. CONCLUSION: The nursing team professionals are not prepared to work in the care of children with ASD. During their training, the subject's approach is poor, making professionals feel insecure and unable to provide care to this child and his family.

INTRODUÇÃO: Os Transtornos do Espectro Autista (TEA) ou Transtornos Autísticos (TA) são desordens do neurodesenvolvimento complexas caracterizadas por déficits na comunicação social, interação social e no comportamento não verbal em múltiplos contextos. OBJETIVO: Analisar, com base nos princípios abordados na Teoria do Cuidado Humano, o conhecimento da equipe de enfermagem acerca dos TEA e a abordagem do tema durante a formação profissional. MÉTODOS: Estudo descritivo, de abordagem qualitativa, que adotou a Teoria do Cuidado Humano de Jean Watson como referencial teórico. Foram realizadas dez entrevistas semiestruturadas com os profissionais da equipe de enfermagem de uma Unidade Básica de Saúde-Escola da Região do ABC Paulista em maio de 2019. Seu conhecimento sobre o conhecimento acerca dos TEA em crianças foi avaliado com o auxílio de um roteiro norteador composto por 7 questões. A análise dos dados foi realizada por meio do método de Análise de Conteúdo. RESULTADOS: Foram elaboradas quatro categorias principais: o cuidado baseado em valores humanístico-altruístas, o cultivo da sensibilidade para si e para o outro, a valorização da expressão de sentimentos e a relação interpessoal, a promoção do ensino-aprendizagem intrapessoal e interpessoal. CONCLUSÃO: Os profissionais de enfermagem não estão preparados para atuar na assistência da criança com TEA. O tema é pouco abordado durante sua formação, fazendo com que os profissionais se sintam inseguros e incapazes de prestar assistência a essa criança e sua família.

Asistencia de enfermería al niño autista: revisión integrativa / Nursing care to the autistic child: an integrative review / Assistência de enfermagem à criança autista: revisão integrativa

INTRODUCCIÓN: El Trastorno del Espectro Autista (TEA) conFigura un trastorno del neurodesarrollo que compromete la interacción social, comunicación y comportamiento, identificado generalmente, en el niño preescolar. Los profesionales de enfermería deben realizar el manejo y acompañamiento del niño autista. OBJETIVO: Analizar las evidencias científicas sobre la asistencia de Enfermería al niño autista. METODOLOGÍA: Revisión integradora de la literatura realizada en la base de datos: CINAHL, Web of Science e LILACS, se utilizó como descriptores: Nursing Care/Cuidados de Enfermagem", "Child/Criança", "Child, Preschool/Pré-escolar", "Autism Disorder/Transtorno Autístico" y "Autism Spectrum Disorder/Transtorno do Espectro Autista". Se incluyeron artículos publicados entre el período de 2013 a 2017 en portugués, español e inglés. RESULTADOS: Los artículos incluidos fueron presentados en cuadro sinóptico y el análisis de los resultados fue realizado de forma descriptiva presentando la síntesis de los estudios por medio de comparaciones y destaque de diferencias y / o semejanzas. Se identificó que es fundamental que la enfermería tenga empatía, visión holística y conocimiento para realizar asistencia singular y de calidad para el niño y la familia. CONCLUSIÓN: La enfermería utiliza la empatía, visión holística y diferentes estrategias para el cuidado del niño autista, sin embargo, los profesionales refieren dificultades en la práctica clínica. Las publicaciones sobre la temática son escasas siendo necesario el desarrollo de investigaciones clínicas

INTRODUCTION: The Autistic Spectrum Disorder (ASD) conFigures a neurodevelopmental disorder that involves social interaction, communication and behavior identified generally in pre-school children. The nursing professionals must perform the management and monitoring of the autistic child. OBJECTIVE: To examine the scientific evidence about nursing care to the autistic child. METHODOLOGY: An integrative review of the literature, held in databases: CINAHL, Web of Science and LILACS databases using the search terms: "Nursing Care", "Child", "Child, Preschool", "Autistic Disorder" and "Autism Spectrum Disorder". There were included articles published between the period of 2013 to 2017 in Portuguese, Spanish and English. RESULTED: The articles included were presented in summary Table and the analysis of the results was performed descriptively presenting the synthesis of studies through comparisons and highlight of differences and/or similarities. It was identified that is basic to nursing to have empathy, holistic vision and knowledge to perform singular assistance and of quality for the child and family. CONCLUSION: Nursing uses the empathy, holistic view and different strategies for the care to the autistic child; however, the professionals refer difficulties in clinical practice. The publications on the subject are scarce being necessary the development of clinical research

INTRODUÇÃO: O Transtorno do Espectro Autista (TEA) conFigura uma perturbação do neurodesenvolvimento que compromete a interação social, comunicação e comportamento identificado geralmente na criança pré-escolar. Os profissionais de enfermagem devem realizar o manejo e acompanhamento da criança autista. OBJETIVO: Analisar as evidências científicas sobre a assistência de Enfermagem à criança autista. METODOLOGIA: Revisão integrativa da literatura, realizada nas bases de dados: CINAHL, Web of Science e LILACS utilizando os termos de busca: "Nursing Care/Cuidados de Enfermagem", "Child/Criança", "Child, Preschool/Pré-escolar", "Autism Disorder/Transtorno Autístico" e "Autism Spectrum Disorder/Transtorno do Espectro Autista". Foram incluídos artigos publicados entre o período de 2013 a 2017 nos idiomas português, espanhol e inglês. RESULTADOS: Os artigos incluídos foram apresentados em quadro sinóptico e a análise dos resultados foi realizada de forma descritiva apresentando a síntese dos estudos por meio de comparações e destaque de diferenças e/ou semelhanças. Identificou-se que é fundamental à enfermagem ter empatia, visão holística e conhecimento para realizar assistência singular e de qualidade para a criança e família. CONCLUSÃO: A enfermagem utiliza a empatia, visão holística e diferentes estratégias para o cuidado a criança autista, no entanto os profissionais referem dificuldades na pratica clínica. As publicações sobre a temática são escassas sendo necessário o desenvolvimento de pesquisas clínicas

Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns.

AIM: The first aim of this study was to explore the lived experiences of parents caring for their autistic children and their experiences with safety for these children. The second aim was to elicit safety recommendations from the parents of autistic children. DESIGN: Hermeneutic phenomenology. METHODS: Fifteen participants who self-reported they were parents of children with autism were recruited via snowball sampling. Data were collected from September 2017-December 2018 in audiotaped interviews using semi-structured questions. Interviews were held with four participants to determine if the findings represented their experiences and concerns accurately. RESULTS: Two underlying structures which demonstrated the trajectory of the experience caring for autistic children were lost/finding our way and battle ready/battle weary. The phenomenological themes within battle weary included living with fear, living with uncertainty and living with disappointment. Resilience was a fourth phenomenological theme which supported the experience of being battle ready. The participants provided recommendations for other parents and healthcare professionals to help keep autistic children safe. CONCLUSION: This study illustrates the unique perspective of parents of autistic children concerning autism and safety. IMPACT: Most parents in this sample reported they faced substantial issues with safety for their child. Study results demonstrated that parents received little to no information about safety from healthcare professionals. Parents of autistic children and healthcare professionals need to be educated about safety issues to prevent injuries and death.

Development of Parental Competence Scale in Parents of Children with Autism.

PURPOSE: The purpose of this study is to develop and psychometrically of parental competence scale in parents of children with autism. DESIGN & METHODS: This mixed-methods design with a sequential exploratory approach was conducted in May 2017 until June 2018 in the south of Iran. In the first phase, a conventional content analysis method was performed with the participation of 16 parents of children with autism. Interviews were held in the autism association offices in an urban area of Iran. In the second phase, validity and reliability of this instrument were assessed with 300 parents of children with autism. RESULTS: During content validity testing, 12 items were deleted. Content validity ratio and index were 0.75 and 0.85, respectively. In face validity, impact scores for all items were reported as >1.5. Factor analysis led to the development of a 2-factor solution accounting for 71.4% of the observed variance. Reliability of the instrument using the calculation of the Cronbach's alpha coefficient was reported as 0.98 for the entire instrument. No statistically significant difference was reported between the pre and post-test scores of parental competence (p = 0.46). The parental competence scale demonstrated acceptable psychometric properties. CONCLUSION: The parental competence scale demonstrated acceptable psychometric properties. Therefore, this scale can be used for assessing parental competence in parents of children with autism. PRACTICE IMPLICATIONS: This scale can be used in future research and for educational and practical purposes with the aim of identifying parents' issues and improving the quality of life of parents of children with autism.

Caring for Adult Patients With Autism in the Critical Care Setting.

Many adults with autism spectrum disorders (ASDs) are admitted as an inpatient, and much has been reported on their ASD-related characteristics and aggressive behaviors that complicate their care during hospitalizations. A variety of surgical and medical clinical conditions have required their admissions in the critical care unit. A limited number of case studies are present for hospitalized adults with ASD; most literature about young children was on how to provide care for them. An interdisciplinary approach with a focus on determining information specific to adult patients with ASD, medical problems or common causes of challenging behaviors, and medication history, as well as nutritional needs, is essential in meeting the care needs of autistic adults. Suggestions informed by multiple sources of evidence are presented to assist critical care nurses on how to provide support to care needs of adult patients with ASD during their hospital stay and transition to home.

A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability.

BACKGROUND: Parents of children with chronic illness have reported decreased psychological and physical quality of life (QoL) relative to parents of children without such illness, which may be associated with the extent of complexity involved in the caregiving role. Given that coping strategies have been reported to influence QoL, our goal was to synthesize existing research about the association between coping strategies and QoL in caregivers of children with chronic illness. We were particularly interested in whether coping strategies may mediate the association between caregiving complexity and QoL, or may modify the association. METHODS: We developed an electronic search strategy to identify relevant citations in Medline, EMBASE, PsycINFO and CINAHL. Two reviewers independently assessed retrieved citations against pre-specified inclusion criteria in two stages of screening. One reviewer abstracted data on study characteristics, methods to address confounding, measurement tools, risk of bias, and results with respect to associations of interest. A second reviewer validated extracted data. We summarized results narratively. RESULTS: 2602 citations were screened and 185 full-text articles reviewed. The 11 articles that met inclusion criteria addressed 5 diseases and included a total of 2155 caregivers. Ten of the 11 included studies were cross-sectional. We identified some evidence that coping was associated with QoL: in three studies, coping strategies considered to be adaptive were positively associated with psychological QoL while in one study, maladaptive strategies were negatively associated with psychological QoL. Only two studies considered coping as a potential mediating variable in the association between caregiving complexity and parental QoL, with inconsistent findings and challenges in interpreting cross-sectional associations. No studies considered coping as a moderating variable. The variability among instruments used to measure key constructs, particularly coping strategies, made it difficult to synthesize results. CONCLUSIONS: We found that coping strategies may be associated with psychological QoL among parents of children with chronic illness. We also identified important research gaps related to the consistent and clear measurement of coping strategies and their prospective association with QoL. Understanding how coping strategies are associated with QoL is important to inform the development of interventions to support families of children with chronic illness.

Living a tormented life: Caregivers' experiences of caring for a child with autism in Northeastern Thailand.

Caring for children with autism spectrum disorder (ASD) can be a demanding challenge to caregivers. The aim of this study was to learn what caring for children with ASD means to caregivers who live in rural Thailand. A hermeneutic phenomenological approach was used to analyze narrative data from interviews of five caregivers. Three themes emerged: (a) being sensitive to the word autism, (b) being trapped in a tunnel of distress, and (c) being the universe for the child. Healthcare professionals need to be sensitive to the caregivers' cultural customs in order to meet their expectations in a respectful way.

Improving the care of children with learning disabilities in hospital.

Emeritus Professor Alan Glasper, from the University of Southampton, discusses care delivery for children with learning disabilities or autism who require a hospital stay, prompted by the recent Lenehan report.

Parenting self-efficacy beliefs in parents of children with autism: Perspectives from Singapore.

Substantial empirical evidence has highlighted the psychological stress and negative well-being of parents whose children are diagnosed with autism. It has further indicated a need for understanding the mechanisms through which these parents come to successfully meet the challenges of caregiving for these children whose condition are often characterized by persistent behavioral, social, and communication problems. This qualitative study aims to bridge the research gap in 3 ways. First, we sought to understand the ways in which mothers of children having autism foster their parenting self-efficacy (PSE) when caring for their child. Second, we sought to identify additional PSE sources. Third, we attempted to understand how these mothers successfully manage negative experiences that were often in the way of their parenting efforts. Ten mothers with children between 7 and 9 years of age were interviewed. Bandura's social-cognitive framework guided the analyses of the sources of PSE (Bandura, 1997). Mastery experiences were identified as the most critical PSE source, and the physiological and affective states of the mothers were second most important in shaping their PSE. Vicarious experiences and verbal persuasion did not emerge as salient sources. "Support in parenting" was also found to be significant in fostering the mothers' perceived capability. Furthermore, we noted that while multiple negative experiences were encountered, these mothers tended to frame their experiences in adaptive ways to allow them to use these as feedback for subsequent parenting endeavors to booster their perceived capability. Implications for future research were discussed in the light of these findings. (PsycINFO Database Record

Developmental Screening and Follow-up by Nurses.

OBJECTIVE: The Ages and Stages Questionnaire (ASQ) and Modified Checklist for Autism in Toddlers (M-CHAT) are commonly used screening tools for developmental delay and autism, respectively. This study aimed to evaluate the effectiveness of implementing 18-month developmental and autism screening by mail, with a standardized follow-up process for abnormal screen results. METHODS: Within a prospective cohort study design, parents of 892 children received by mail the 18-month ASQ and M-CHAT questionnaires between December 2008 and September 2009. A registered nurse scored the questionnaires and, if needed, administered follow-up screening or set up a referral to Early Intervention or subspecialty pediatrics. Medical record reviews determined clinical outcomes of children who required intervention after initial screening through September 2010. Additionally, demographic factors were evaluated for association with responding to the questionnaires. RESULTS: The ASQ and M-CHAT questionnaires were returned by 529 (59.3%) of the parents. Parents of White children (390/575 [67.8%]) and those with private insurance (457/660 [69.2%]) were significantly more likely to return screening questionnaires than parents of non-White (64/171 [37.4%]; P < .001) and government-insured children (58/169 [34.3%]; P < .001), respectively. Of the 529 children with returned surveys, 109 (20.6%) did not pass at least 1 of the initial screens and 12 (2.3%) were referred after not passing the follow-up screening process. CONCLUSIONS: Developmental and autism screening by mail is not a sufficient method to comprehensively screen a general pediatric population. A nurse-completed, standardized follow-up process after an initial failed developmental screen may increase the yield of appropriate Early Intervention or subspecialty referrals.

Prática e conhecimento dos enfermeiros sobre o autismo infantil / La práctica y el conocimiento de las enfermeras acerca del autismo infantil / Practice and knowledge of nurses about child autism

Objective: assessing the knowledge and practice of nurses of the Family Health Strategy about autisticdisorder. Method: an exploratory research of a qualitative approach consisting of 15 nurses. There was used a semistructured interview. Data analysis was made by the representational analysis. It was approvedby the Committee of Ethics in Research of the University of Rio Grande do Norte (CEP/UERN nº 124/11). Results: it became evident insecurity and fragility in nurses' knowledge about autistic disorder, because they have failed to define autism or demonstrated experience with autistic people and report the lack of training turned to the above topic. Conclusion: there was knowledge deficit by the nurses about infantil autism and the inextencence of practical interventions with autistic people and their families, besides not offering capabilities that address the subject.

Objetivo: analisar a prática e o conhecimento dos enfermeiros da Estratégia Saúde da Família acerca do transtorno autístico. Método: pesquisa exploratória, com abordagem qualitativa, composta por 15 enfermeiros. Utilizou-se a entrevista semiestruturada. A análise de dados deu-se através da análise representacional, aprovada pelo Comitê de Ética em Pesquisa da Universidade do Estado do Rio Grande do Norte (CEP/UERN nº 124/11). Resultados: evidenciou-se insegurança e fragilidade no conhecimento dos enfermeiros sobre transtorno autístico em virtude de não terem conseguido definir autismo nem demonstrado vivência com pessoas autistas e relataram a inexistência de capacitações voltadas para o tema exposto. Conclusão: constatou-se déficit de conhecimento dos enfermeiros acerca do autismo infantil e inexistência de intervenções práticas realizadas com pessoas autistas e seus familiares, além da não oferta de capacitações que abordem o assunto.

Objetivo: evaluar el conocimiento y la práctica de las enfermeras de la Estrategia de Salud de la Familia sobre el trastorno autista. Método: investigación exploratoria, con el enfoque cualitativo, que consta de 15 enfermeras. Se utilizó una entrevista semiestructurada. El análisis de datos se realizó mediante el análisis representacional, aprobada por el Comité de Ética en la Investigación de la Universidad del Rio Grande do Norte (CEP/UERN nº 124/11). Resultados: se hizo evidente la inseguridad y la fragilidad en el conocimiento de las enfermeras acerca del trastorno autista porque no han logrado definir el autismo o la experiencia demostrada con las personas autistas y reportaron la falta de formación centrado en el tema. Conclusión: se observó un déficit de conocimiento de las enfermeras acerca del autismo infantil y la falta de intervenciones prácticas con las personas con autismo y sus famílias, además de no ofrecer capacidades que abordan el tema.

Feeding problems among children with autism in a clinical population in India.

OBJECTIVES: To compare the prevalence and profile of feeding problems (FP) and their relationship with sensory processing in children with autism and intellectual disability (ID). METHODS: Children between ages 3 to 10 y with autism (N = 41) and ID (N = 56) were recruited and assessed with Brief Autism Mealtime Behavior Inventory, Sensory Profile Questionnaire, Childhood Autism Rating Scale and Binet-Kamat Scale of Intelligence or Gesell's Developmental Schedule. Assessments were done by independent raters. Bivariate and multivariate analyses were used appropriately. RESULTS: The prevalence of FP were 61 and 46.4% among children with autism and ID respectively. Feeding problems were severe among children with autism (P 0.001), especially in young children with autism (P 0.05), and gender was not related to FP. Disruptive meal-time behaviors (P 0.001) and food over-selectivity (P 0.02) were significantly more among children with autism in the bivariate and multivariate analysis. Feeding problems and various dimensions of sensory processing were significantly associated after controlling the confounders. CONCLUSIONS: These findings underscore the need for mandatory assessment of FP in children with developmental disabilities, and if present, they need to be addressed with multimodal-multidisciplinary interventions.

Comparison of burden among primary care-givers of children with autism and intellectual disability against children with intellectual disability only in a hospital population in India.

OBJECTIVE: To compare the burden among the primary caregivers (PCG) of children with autism and intellectual disability (ASD + ID) against intellectual disability (ID) only, and identify the factors that predict high caregiver burden. METHODS: Children with either ASD + ID (N = 41) or ID (N = 56) and their PCG were recruited and assessed using the Family Burden Interview Schedule, Binet Kamat Scale of Intelligence or Gesell's Developmental Schedule and Vineland Social Maturity Scale, Childhood Autism Rating Scale, Sensory Profile and Brief Autism Mealtime Behavior Inventory after collecting the socio-demographic details. Appropriate bivariate and multivariate statistical test were used. RESULTS: The total burden and level of burden was similar among PCG of children with ASD + ID and ID (P = 0.8). However, financial burden (P = 0.03) and burden due to the effects on the physical health of other family members (P = 0.03) was more among the ID group. The burden due to the effects on family interaction was more (P = 0.009) in the ASD + ID group. The socio-economic status (OR = 3.60; P = 0.03) and the kinship of the primary care-giver (OR = 0.37; P = 0.008) were significantly associated with high level of burden. In addition, the diagnosis, and gender of the child contributed to the prediction model for high level of burden. CONCLUSIONS: The interventions for children with ASD + ID and ID should have modules to address burden among PCG. Disability specific burden alleviating strategies should be used among PCG who are at risk of having high burden.

Autism.

Essential facts Autism is a lifelong developmental disability that affects how individuals communicate with and relate to other people and the world around them. Autism is known as a spectrum condition because the symptoms vary from person to person and range from mild to severe. According to the National Autistic Society, autism affects around one in 100 people.