A qualitative enquiry into the challenging roles of caregivers caring for children with Autism Spectrum Disorders in Ghana.

BACKGROUND: Autism Spectrum Disorder (ASD) is a condition commonly characterized by challenges with social interaction, repetitive atypical behaviour, and restricted interest. It is estimated that about 1 in 160 children has ASD. Caring for children with ASD is challenging for many parents or caregivers. OBJECTIVES: The study aims at exploring the challenges experienced by caregivers of children with ASD. METHODS: A qualitative phenomenological study was employed using an exploratory descriptive research design. A total of 10 participants were recruited in this study using a purposive sampling technique. Data were analysed using content analysis procedures. RESULT: Caregivers of children with ASD face social, financial, and emotional challenges, challenges in accessing health care, education and training of their children in mainstream school settings. CONCLUSION: The numerous challenges have implications for the quality of life of the caregivers and their children. The financial challenges and inaccessibility of specialist health services have serious implications for the continuous medical care and monitoring of children with ASD. The challenges in education and training of children with ASD has negative consequences for enrolment and retention of children with ASD in mainstream school settings.

Diagnósticos e intervenções de enfermagem em crianças com transtorno do espectro autista: perspectiva para o autocuidado / Diagnósticos e intervenciones de enfermería en niños con trastorno del espectro autista: perspectiva para el autocuidado / Nursing diagnoses and interventions in children with autism spectrum disorder: perspective for self-care

Objetivo: descrever os diagnósticos e as intervenções de enfermagem em crianças com transtorno do espectro autista fundamentados em taxonomias de enfermagem e na teoria do autocuidado. Método: estudo exploratório e descritivo, com abordagem qualitativa com 11 crianças e embasado na aplicação do processo de enfermagem. Utilizou-se taxonomia International Nursing Diagnoses: definitions and classification, para definição dos diagnósticos de enfermagem, a teoria do autocuidado e as recomendações da Nursing Interventions Classification para planejamento das intervenções. Resultados: isolamento social, falta de motivação e dependência para execução de atividades constituíram os principais problemas levantados. As afirmativas diagnósticas que possibilitaram a estruturação de 27 intervenções de enfermagem, compreenderam o déficit no autocuidado para alimentação, banho e higiene íntima; o isolamento social; e a disposição para melhora do autocuidado. Considerações finais: a capacidade para o autocuidado esteve comprometida, requerendo estratégias de enfermagem efetivas voltadas para a criança e para os familiares.

Objetivo: describir diagnósticos e intervenciones de enfermería en niños con trastorno del espectro autista basados en taxonomías de enfermería y teoría del autocuidado. Método: estudio exploratorio y descriptivo, con abordaje cualitativo con 11 niños y basado en la aplicación del proceso de enfermería. International Nursing Diagnoses: se utilizó la taxonomía de definitions and classification para definir los diagnósticos de enfermería, la teoría del autocuidado y las recomendaciones de Nursing Interventions Classification para la planificación de la intervención. Resultados: el aislamiento social, la falta de motivación y la dependencia para realizar actividades fueron los principales problemas planteados. Las declaraciones diagnósticas que permitieron la estructuración de 27 intervenciones de enfermería comprendieron el déficit en el autocuidado de la alimentación, el baño y la higiene íntima; aislamiento social; y la voluntad de mejorar el autocuidado. Consideraciones finales: la capacidad de autocuidado se vio comprometida, requiriendo estrategias de enfermería efectivas dirigidas al niño y a los miembros de la familia.

Objective: to describe nursing diagnoses and interventions in children with autism spectrum disorder based on nursing taxonomies and self-care theory. Method: exploratory and descriptive study, with a qualitative approach with 11 children and based on the application of the nursing process. International Nursing Diagnoses: definitions and classification taxonomy was used to define nursing diagnoses, self-care theory and nursing interventions classification recommendations for intervention planning. Results: social isolation, lack of motivation and dependence to perform activities were the main problems raised. The diagnostic statements that allowed the structuring of 27 nursing interventions comprised the deficit in self-care for food, bathing and intimate hygiene; social isolation; and the willingness to improve self-care. Final considerations: the capacity for self-care was compromised, requiring effective nursing strategies aimed at the child and family members.

Comparing the initial impact of COVID-19 on burden and psychological distress among family caregivers of children with and without developmental disabilities.

The current COVID-19 pandemic is presenting challenges for families (Cluver et al., The Lancet, 2020), which may be exacerbated for caregivers of children with developmental disabilities (DDs; Center on the Developing Child, Stress, hope, and the role of science: Responding to the coronavirus pandemic, 2020). The purpose of this study was to explore caregiver burden and psychological distress among caregivers of children with DD as compared to caregivers of typically developing children across the United States as a result of COVID-19. Between 2 weeks and 1 month following COVID-19-related school closures, a total of 460 caregivers from across the U.S. completed an online survey via Qualtrics; recruitment and initial survey completion occurred simultaneously. Of the total sample of eligible participants (N = 407), 225 were the primary caregiver of a child with autism spectrum disorder (ASD)/attention-deficit/hyperactivity disorder (ADHD) and 182 were the primary caregiver of a child without ASD/ADHD. Participants across groups indicated varying levels of exposure to COVID-19 and an impact of COVID-19 at the community and individual or family levels. However, caregivers of children with ASD/ADHD reported significantly higher levels of burden, depression, anxiety, and stress. Overall, findings are consistent with anecdotal and preliminary reports that all caregivers are experiencing COVID-19-related challenges, with caregivers of children with ASD/ADHD experiencing even greater challenges, particularly with regard to burden and psychological distress. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Capacitação Análise do Comportamento Aplicada (ABA) voltada ao Transtorno do Espectro Autismo (TEA)

O Transtorno do espectro do autismo é considerado um transtorno do neurodesenvolvimento com início na infância, que afeta a capacidade de se comunicar e interagir, onde a gravidade dos sintomas pode variar, sendo os mais comuns: dificuldades de comunicação, dificuldade nas interações sociais, interesses obsessivos e comportamentos repetitivos. Por se tratar de um agravo crônico, requer tratamento longitudinal, envolvendo terapias, dentre elas, comportamentais, educacionais e familiares com vistas à redução dos sintomas e melhora no desenvolvimento social e educacional. O cuidado em saúde das pessoas com Transtorno do espectro do autismo envolvem diversos especialistas, dentre eles fonoaudiólogo, terapeuta ocupacional, psicólogo, médico neurologista e psiquiatra. Evidências científicas que indicam melhoras nos sintomas do autismo a partir do tratamento na metodologia Análise do Comportamento Aplicada (ABA) que proporciona a pessoa com Transtorno do espectro do autismo o desenvolvimento de sua autonomia por meio da aprendizagem de importantes habilidades sociais e motoras nas áreas de comunicação e autocuidado, bem como na redução de comportamentos não adaptativos, como estereotipias, agressividade e controle de raiva. Desta forma, a Capacitação multiprofissional em Análise do Comportamento Aplicada voltado ao Transtorno do espectro do autismo, em parceria com The Scott Center for Autism Treatment/Florida Institute of Technology, tem como proposta capacitar profissionais (Médicos, psicólogos, fonoaudiólogos, fisioterapeutas, Terapeutas ocupacionais, enfermeiros, técnicos de enfermagem, assistentes sociais, cirurgiões-dentistas) e gestores da Rede SUS do Estado do Paraná em Análise do Comportamento Aplicada voltado ao Transtorno do espectro do autismo, visando qualificar o atendimento dos usuários com suspeita e/ou diagnóstico de Transtorno do espectro do autismo, impactando na melhora da qualidade de vida e possibilidade de desenvolvimento de autonomia de milhares de pessoas. Além desta capacitação na modalidade a distância, a Escola de Saúde Pública do Paraná – ESPP da Secretaria de Estado de Saúde do Paraná – SESA, em parceria com The Scott Center for Autism Treatment/Florida Institute of Technology, ofertará o módulo presencial para formação de multiplicadores em análise do comportamento aplicada (ABA) voltado ao Transtorno do Espectro Autista (TEA) no período letivo do ano de 2021. Para este módulo presencial será publicado um Edital próprio para seleção dos candidatos, onde o desempenho do alunos no módulo EaD também será pontuado. SAIBA MAIS! http://www.escoladesaude.pr.gov.br/mo...

Childhood Schizophrenia.

Editor's note: From its first issue in 1900 through to the present day, AJN has unparalleled archives detailing nurses' work and lives over more than a century. These articles not only chronicle nursing's growth as a profession within the context of the events of the day, but they also reveal prevailing societal attitudes about women, health care, and human rights. Today's nursing school curricula rarely include nursing's history, but it's a history worth knowing. To this end, From the AJN Archives highlights articles selected to fit today's topics and times.For many years, autism was thought to be a type of childhood schizophrenia. In AJN's May 1958 issue, an article entitled "Childhood Schizophrenia" describes the inpatient treatment of children with autism. Some parts of it are difficult to read, not because the actual treatment was painful or torturous, but because experts decided that children needed to be away from their parents in order for treatment to be successful. The authors of this article, a pediatric psychiatrist and a psychiatric nurse educator, write, "Because the mother's role is so significant in the child's development . . . in almost every instance, the schizophrenic [autistic] child must be removed from its 'sick' mother in order that adequate remedial measures may be instituted." To read the full article, go to http://links.lww.com/AJN/A175.Today, autism spectrum disorder (ASD) is recognized as a neurodevelopmental condition that probably begins during the prenatal to early postnatal period. In this issue, authors Deborah Christensen and Jennifer Zubler provide an update on ASD risk factors, epidemiology, diagnosis, and treatment in "From the CDC: Understanding Autism Spectrum Disorder."

An Exploration of Health Behaviors in a Mind-Body Resilience Intervention for Parents of Children with Developmental Disabilities.

OBJECTIVE: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention. METHODS: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated. RESULTS: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81). CONCLUSION: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism.

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers' quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.

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

Paediatric nurses' knowledge and experience of autism spectrum disorders: An Italian survey.

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.

School Nurses on the Front Lines of Health Care: How to Help Students With Autism Spectrum Disorder Navigate a Meltdown in School.

Through a presented case scenario, this article describes the assessment and management of behaviors associated with autism spectrum disorder (ASD) in the pediatric population, with mnemonics as a memory tool. Although students present mainly to the school nurses' office with physical complaints, there are many mental health concerns in the school-age population with emotional and physical consequences, particularly among students with ASD. Typically considered a developmental disorder, ASD affects communication and behavior with a wide range of symptoms that can vary in severity from person to person. It is important to understand the presentation and management of common pediatric mental health issues at school to be on the front line of your students' health.

Health-related quality of life amongst primary caregivers of children with intellectual disability.

BACKGROUND: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population. METHODS: Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ-5D-5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties. RESULTS: Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ-5D-5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ-5D-5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age-equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co-morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL. CONCLUSIONS: This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost-effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers.

Addressing Needs of Hospitalized Patients With Autism: Partnership With Parents.

Evidence suggests that improved health outcomes and reducing the hospital length of stay of individuals with autism require working in partnership between parents and health care professionals. Parents' ability to cope in their daily caregiving responsibilities to their child with autism and assessment of their hospital experience can have an impact on their participation with the care team. Nurses working in the inpatient setting can provide support to parents during their encounter with them. This article presented some of the helpful approaches that can help in building positive relationships with parents that may help facilitate addressing the needs of their child with autism. Suggestions that nurses can implement to support the parents cope with their daily challenges are presented. The approaches were discussed in relation to literature and suggestions from parents of individuals with autism spectrum disorder.

The promise of autism genetics: Still waiting.

The condition presently known as autism spectrum disorder was first described in the literature nearly 80 years ago. Since then, the research community has mounted a quest to discover the etiology of the condition in hopes of discovering prevention, treatment, and cures for this developmental disorder. The field of autism genetics has made progress in understanding what genes are and what are not associated with autism. This article provides a brief overview of the evolution of autism genetics and describes the current state of science in realizing genetically informed prevention and treatments.

Managing health changes for people with a learning disability in a residential care home setting.

BACKGROUND: People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging. AIM: To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD. METHODS: Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents. FINDINGS: The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline. CONCLUSIONS: The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.

Quality of Life in Families of Young Children With Autism Spectrum Disorder.

The present study investigated family quality of life (FQOL) as experienced by 493 mothers and fathers (295 families) of young children with autism spectrum disorder (ASD) prior to receiving early intervention services in the province of Québec. These families were most satisfied with their physical and material well-being and least satisfied with their family interactions. Children's level of functioning across various standardized and subjective measures were positively associated with parents' FQOL. In both parents, family characteristics associated with financial and personal resources were also linked to FQOL. The child's age and the number of children were associated with mothers' FQOL. Overall, these findings provide a portrait of ASD-related stressors and resources relevant to both parents during the early childhood period.

Affiliate stigma, perceived social support and perceived stress in caregivers of children with autism spectrum disorder: A multiple mediation study.

BACKGROUND: Affiliate stigma negatively predicts social support, and positively predicts psychological distress, in caregivers of children with ASD. Whether the affiliate stigma-distress relationship occurs indirectly via social support however has not been explored. METHODS: A correlational design was used. A sample of n = 124 caregivers of children with ASD completed an online survey assessing affiliate stigma, perceived support from family, friends and significant others, and perceived stress. RESULTS: The relationship between greater affiliate stigma and increased perceived stress occurred indirectly via lower perceived support from family, but not from friends or significant others. CONCLUSIONS: These findings underscore the importance of increasing caregivers' perceived family support. Whether interventions that alleviate affiliate stigma are beneficial for reducing perceived stress, and whether this effect is mediated by increased perceived availability of support, might be the subject of future research.

Quality of life interventions for primary caregivers of children with autism spectrum disorder: a scoping review.

Background: Raising a child with autism spectrum disorder is associated with high levels of stress. Primary caregivers are a group at risk of mental illness and reduced quality of life. Although interventions for the child with autism spectrum disorder exist, there are few or no interventions focusing on the physical, emotional and psychological needs of the primary caregivers. Objectives: The aim of this scoping review paper was to identify and describe quality of life interventions offered to primary caregivers of children with autism spectrum disorder. The content, structure, and mechanism of delivery of these interventions, including their contribution to improving the quality of life of these caregivers, are discussed. Method: A scoping review protocol and methodology was developed and implemented according to a five-step process; namely, identification of the research question including the PICo, identification of suitable studies using selected search strings, selection of studies using PRISMA guidelines, charting of the results, and collation and summarising of the information. Reviewers where active at various stages to maintain the rigour of the study. Twenty one studies were reviewed and eligible for analysis. Results: The content and trends in structure and mechanism of delivery are described. Three themes emanated from the interventions' content. The studies were analysed according to quality of life domains addressed in the interventions. Conclusion: The scoping review highlights current practices informing interventions for primary caregivers of children with autism spectrum disorder and may serve as a guide by practitioners and researchers for developing future evidence-based interventions for this population.

Maintaining Safety and Planning for the Future.

CASE: Kevin is a 12-year-old boy with autism spectrum disorder, intellectual disability (nonverbal IQ scores in mid-40s), and attention-deficit/hyperactivity disorder who has been followed up by a developmental-behavioral pediatrician (DBP) and a child psychologist for medication and behavioral management since he was 4 years old. Kevin was placed in the care of his great-great-aunt shortly after he turned 2 years of age because of concerns of neglect. She is now his legal guardian.Kevin is predominately nonverbal but does use a few single words to make requests or label items. He attends a public school and receives full-time special education support. He has a personal care assistant (PCA) who provides in-home support 5 to 6 days/wk for 3 to 4 hours at a time. The PCA is working on toilet training, using a "clock-training" approach, and also takes Kevin outdoors to play or on short outings during her visits. In his free time, Kevin prefers to watch cooking shows on television.Over the past year, Kevin's behaviors have become more concerning. There have been several episodes of Kevin waking up during the early morning hours and going to the kitchen to "cook." After one of these episodes, his guardian was not aware that Kevin had woken up until the next morning when she found a concoction of corn starch, coffee grounds, cottage cheese, and powdered drink mix in the blender. Kevin had also woken up during the night and ventured out of the house into the back yard. His guardian had woken up immediately as the alarm system sounded when he opened the outer door from the house to the yard.A door alarm was added to Kevin's bedroom door so that his guardian would be alerted when he leaves his bedroom; however, the alarm is not used consistently because there are times when the alarm cannot be found at bedtime. Kevin's guardian was able to obtain a GPS device for him to wear on his shoe from the local police department. He wears this without resistance every day.Kevin's guardian is in her mid-70s, and she has had several health issues over the past 2 to 3 years. There are no other family members who are willing or able to care for Kevin if his guardian were no longer able to. The DBP and child psychologist have encouraged Kevin's guardian to explore long-term residential care options with the state agency that provides support for individuals with intellectual disabilities and with Kevin's insurance provider, but the guardian is very reluctant to do this. She fears that Kevin will be removed from her care or placed in a "home" where someone will "do bad things to him."What else would you recommend or actions would you take to support Kevin's guardian in ensuring Kevin's safety and planning for his future care?

Examination of Care Burden and Stress Coping Styles of Parents of Children with Autism Spectrum Disorder.

OBJECTIVE: The study was conducted to examine the caregiver burden and stress coping styles of parents of children with Autism Spectrum Disorder (ASD). DESIGN AND METHODS: This descriptive cross-sectional study was conducted with parents of 131 children with ASD who were enrolled in a private education practice center in Istanbul between August 2015 and August 2016. The data were collected using a questionnaire prepared by the researchers, and the "Caregiver Strain Index" and "Ways of Coping Questionnaire." RESULTS: The mean age of the children in the sample group was 4.83 ±â€¯0.99 years; 63.4% were boys. Nearly 40% (38.2%) were diagnosed as having ASD at the age of 2 years. It was determined that the parents of children with ASD had a higher burden of care (CSI mean score: 7.68 ±â€¯4.30). The caregiver burden was significantly higher (p < 0.05) for parents of one child as compared to parents with more children, and parents with daughters compared to parents with sons. In addition, the mothers were found to have higher scores of 'submissive approach' and 'seeking social support' than fathers. CONCLUSION: Parents of children with ASD had a higher caregiver burden. Scores of approach types of self-confident, helpless, optimistic, and seeking social support were significant predictors of caregiver burden. PRACTICE IMPLICATIONS: Nurses are encouraged to take a more active role to improve the health of children with autism and families should contribute to mitigating the burden care of parents by informing families about social support systems.

Comparing parental stress of children with neurodevelopmental disorders: The case of Williams syndrome, Down syndrome and autism spectrum disorders.

BACKGROUND: Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors was also explored. METHOD: Parents of children with WS (n = 107), DS (n = 79) and ASD (n = 79) completed a background questionnaire, a parental stress questionnaire and a satisfaction with life questionnaire. RESULTS: Although all groups displayed similar levels of parental stress, the factors that influenced this stress differed between the groups. There were also differences for life satisfaction and relationships between parental stress and individual and contextual factors. CONCLUSIONS: Although parents of children with NDs are not at an increased risk of parental stress, the results suggest that interventions should be syndrome-specific.