Caregivers' voices: From the world of autism spectrum disorder.

BACKGROUND:  Caring for a child with autism spectrum disorder (ASD) is a challenging and stressful task, especially in countries with limited resources. Additional research is necessary, considering the increasing prevalence of children with ASD, to gain increased knowledge of the complex difficulties faced by caregivers of ASD children and to offer insights into the coping strategies and support networks that parents utilise. OBJECTIVES:  The objective of this study was to explore and describe the experiences and coping mechanisms of caregivers of children with ASD in Dr Kenneth Kaunda district, North West province, South Africa. METHOD:  Qualitative explorative, contextual and descriptive design with purposive sampling technique and semi-structured interviews were conducted. Data were analysed following the six steps of reflexive thematic analysis. RESULTS:  Two themes were identified: Caregivers' experiences in raising a child with autism, and caregivers' coping in raising a child with autism. CONCLUSION:  The research established caregivers' experiences and coping mechanisms in raising a child with ASD and the effects on different aspects of their lives including emotional, social and financial aspects, which contribute negatively to their holistic well-being. These impediments warrant the establishment of emotional support groups, empowerment of caregivers and awareness-raising through campaigns to educate the family and the community on the diverse challenges.Contribution: The findings of this study contribute to a deeper understanding of the multifaceted challenges faced by caregivers of children with ASD and provide insights into the support systems and coping mechanisms employed by these caregivers within the socio-ecological context.

What is in a Day? Investigating the Relationship Between Sleep Quality and Quality of Life Among Caregivers of Children With Autism.

OBJECTIVE: The purpose of this study was to investigate the relationship between sleep quality and quality of life (QOL), or overall level of well-being, in caregivers of children with autism spectrum disorder (ASD) on the daily level. METHOD: This study utilizes mobile ecological momentary assessment (mEMA) to capture daily experiences of caregivers of children with ASD over a period of 14 days. Utilizing mEMA, this study examines relations between sleep quality and QOL and the role of mood and physical health as mediators on the daily level, specifically for caregivers of children with ASD (n = 51). The data were analyzed using multilevel modeling by MLMed macro. RESULTS: The results suggest that there is a significant positive relation between sleep quality and QOL across individuals. Surprisingly, there was a negative relation between sleep quality and QOL within individuals. The positive relationship between sleep quality and QOL across participants was explained through positive mood across individuals. Furthermore, this relationship also occurred through better physical health across and within individuals. CONCLUSION: For caregivers of children with ASD, daily positive mood and better physical health explain the relationship between daily sleep quality and QOL. Understanding daily experiences of caregivers of children with ASD may inform interventions and practices aimed at improving sleep and its associated outcomes to ultimately improve caregiver well-being.

Neurodiversity & nursing: Reflection of a final year general nursing student.

Autism Spectrum Disorder is neurodevelopmental disorder, the manifestations of which and levels of support individuals may require vary greatly. Although there is a plethora of information regarding supporting autistic individuals in higher education and the workplace, there is a paucity of information regarding both autistic nurses and nursing students. This paper presents an overview of autism spectrum disorder, the particular features of which are relevant in nursing professions and in the context of higher education; and highlights issues surrounding disclosure and implementing reasonable accommodations. It concludes with a reflection of the author's experience as an autistic nursing student.

Relationship Between Mindfulness and Affiliate Stigma in Parents of Children with Autism Spectrum Disorder in China: The Mediating Role of Coping Styles.

PURPOSE: This study aims to investigate the current status of affiliate stigma among parents of autistic children, analyze the influencing factors, explore the relationship among mindfulness, coping styles, and affiliate stigma, and verify the mediating role of coping styles between mindfulness and affiliate stigma in parents of children with autism in China. METHOD: Between February and April 2023, the Child Development Behaviour Centre of a public hospital in China recruited 345 parents of children with autism. These parents completed the general information questionnaire, the Mindful Attention Awareness Scale, the Affiliate Stigma Scale, and the Simple Coping Style Questionnaire. We then adapted the Hayes Process Macro and Bootstrap methods to examine the mediating effects of coping styles between mindfulness and affiliate stigma. RESULTS: (1) The total affiliate stigma score of parents of children with autism was 48.53 (standard deviation:: 10.74). Parents' age, monthly family income, duration of care, mindfulness, and coping styles were the influencing factors of parental affiliate stigma. (2) Mindfulness was positively correlated with positive coping style (r = 0.33, p < .01) and negatively correlated with negative coping style, affiliate stigma (r = -0.38, -0.39, p < .01), whereas affiliate stigma was negatively correlated with positive coping style (r = -0.34, p < .01) and positively correlated with negative coping style (r = 0.41, p < .01). (3) Positive coping style and negative coping style play a parallel mediating role between mindfulness and affiliate stigma of parents of autistic children. CONCLUSIONS: Parents of children with autism experience significant levels of affiliate stigma. Mindfulness has a direct impact on associated stigma in parents of children with autism and also indirectly predicts associated stigma through the intermediary influence of positive and negative coping styles. Healthcare professionals could perform mindfulness interventions from an optimistic psychology viewpoint to boost parents' mindfulness and coping abilities, thereby accomplishing the objective of mitigating affiliate stigma.

Management of Procedural Pain and Anxiety in Youth With Autism Spectrum Disorder: A Scoping Review.

BACKGROUND: Although there is a body of literature on the implementation of interventions to manage procedural pain and anxiety in youth with autism spectrum disorders (ASD), we found no literature presenting the current state of knowledge on this topic. OBJECTIVES: To review the state of knowledge on interventions for the management of procedural pain and anxiety in children and adolescents with ASD. METHOD: A scoping review using PRISMA-ScR was conducted. DATA SOURCES: PubMed, MEDLINE, all EBM reviews, Embase, APA PsychInfo, EBSCO CINAHL, and ProQuest Dissertations and Theses Global databases were searched. Gray literature was also searched. ANALYSIS METHOD: Braun and Clarke's (2006) model for thematic analysis in psychology was used to synthesize the search results. RESULTS: Thirty articles were selected. Analysis of the extracted data revealed four elements of intervention for better management of procedural pain and anxiety in the study population: 1) characteristics of the procedure and the immediate environment; 2) parent-child interactions; 3) health care provider-child interactions; and 4) direct pharmacological and nonpharmacological interventions. IMPLICATIONS FOR NURSING PRACTICE: Nurses must be able to implement appropriate interventions for the management of procedural pain and anxiety in youth with an autism spectrum disorder.

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.

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.

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.