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.

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.

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.

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.

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.

Identifying Language for People on the Autism Spectrum: A Scoping Review.

Person-first language is considered a central component to recovery oriented person-centred care; however, there is a growing adoption of identify-first language among autistic advocates. Mental health nurses require awareness of critical autism issues given the high prevalence of comorbid psychopathology. This scoping review of literature from 2010 to 2018 regarding identifying language for people on the autism spectrum identified a paucity of research that systematically explored and considered antagonisms, representation, and potential consequences of either of the current modes of identifying language becoming dominant. Mental health nurses should appreciate the complexity within identifying language and adopt context dependent language.

Creating a Sensory-Friendly Pediatric Emergency Department.

INTRODUCTION: For children with autism spectrum disorder (ASD) and sensory-processing disorder (SPD), an unexpected visit to the emergency department can be an overwhelming experience that creates intensifying behaviors and an unsafe clinical interaction for the child, nurses, and providers. Although resources exist to help nurses work with this specialized group, there are limited examples of the challenges and opportunities of modifying an emergency department to be a place where nurses can provide sensory-informed care. METHODS: Guided by Watson's Theory of Caring, nurses and child life specialists in our pediatric emergency department initiated a practice improvement (PI) project to create a sensory-friendly emergency department. The nurses (1) engaged with community members and families, (2) examined current practices, (3) modified the patient care environment, (4) collaborated in an interprofessional educational session, and (5) created a shared vision for the modified patient-care environment. RESULTS: This article describes the nurse-initiated PI process and the journey to create an evidence-based sensory-friendly pediatric emergency department. A model is presented so that other facilities can embark on their own initiative, and case studies are used to evaluate project outcomes. DISCUSSION: Integrating current evidence, staff suggestions, community input, and expert advice allowed us to find creative solutions to the unique sensory needs of children who visit our emergency department. Modifying both the patient-care environment and the patient-flow process to accommodate for the needs of children with ASD/SPD created a more peaceful and healing environment for children and their families and gave nurses the support they needed to provide sensory-informed care.

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.

Factors that affect the physical and mental health of caregivers of school-age children and transitioning young adults with autism spectrum disorder.

BACKGROUND: Although studies have examined quality of life (QOL) among family caregivers of individuals with autism spectrum disorder (ASD), little is known about potential differences in QOL based on the age of the individual with ASD, particularly in relation to caregivers' needs, beliefs and coping mechanisms. METHOD: This study investigated 132 caregivers of school-age children and 61 caregivers of transitioning young adults with ASD on measures of caregiving, strain, coping, family needs and QOL. RESULTS: The results indicated that there were no significant differences in QOL based on the age of the individuals with ASD, although parents of children reported significantly more caregiving behaviours, with coping, internalized strain and health information needs predicted mental health QOL. DISCUSSION: Age of the individual with ASD was not significantly related to caregivers' QOL. More research is needed to determine independent predictors of caregiver QOL across the lifespan.

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.

The psychometric properties of the mindful attention awareness scale among Arab parents of children with autism spectrum disorder.

AIM: The purpose of this study was to examine the psychometric properties and the theoretical structure of the mindful attention awareness scale (MAAS) with parents of children with autism spectrum disorder (ASD) in Jordan. METHOD: A sample of 104 parents of children with ASD in Jordan completed the study. Exploratory and confirmatory factor analyses were conducted to assess the factor structure of MAAS. Internal consistency was assessed using Cronbach's alpha. The convergent validity was assessed using Pearson's product-moment correlations between the MAAS and measures of psychological distress and Quality of life. RESULTS: A confirmatory factor analysis showed that the modified 13-item MAAS fits the data significantly better than the original 15-item model. However, both the 13-item and the 15-item models showed a single factor structure, with excellent internal consistency and convergent validity. CONCLUSION: This preliminary study supports using the MAAS in Arab parents of children with ASD.

Examining the utilisation and usefulness of social support for mothers with young children with autism spectrum disorder.

BACKGROUND: Social support has been described as a vital resource for families with children with disability. Although the benefits of social support have been described, little is known about the utilisation patterns in families of young children with autism spectrum disorder (ASD). METHOD: In a community sample of 78 American families with children (2-6 years) with ASD, this study examined the utilisation and usefulness of social support. Child, family, and service variables related to social support were explored. RESULTS: Mothers of children with ASD reported using a combination of formal and informal supports, and these were perceived to be helpful. Sociodemographic variables, child behaviour problems, satisfaction with the autism diagnostic process, and access to information about ASD predicted social support utilisation. CONCLUSION: Social support utilisation varies as a function of different child, family, and service variables. Understanding these variables may help professionals guide families in access to and use of social support.

Working with a patient with an autism spectrum condition.

Chris Barber, Visiting Lecturer (Learning Disabilities), Birmingham City University ( chris.barber@bcu.ac.uk ), offers tips for nurses working with adults with autism spectrum conditions.

Barriers to non-residential respite care for adults with moderate to complex needs: A UK perspective.

Respite aims to alleviate the stress and burden of caring for someone with an intellectual disability and/or autism. Respite can take place in a number of different ways, but most commonly occurs in a residential setting. Based on survey and interview data with carers (CAs), service users and stakeholders (STs) in a northern city in England, this article explores some of the perceived or actual barriers to availing 'non-residential' respite. A number of barriers to non-residential respite are identified. Residential respite appears to be the default conceptualization of 'respite' for carers, service users and stakeholders. Persuading carers, service users and stakeholders to give up the familiarity and safety of residential respite in favour of a non-residential alternative will be challenging unless those involved are more informed. Limitations and directions for future research are suggested.

Caring for children with autism spectrum condition in paediatric emergency departments.

The needs of children with autism spectrum condition (ASC) in paediatric emergency departments (EDs) can often be overlooked. EDs are high-stress environments for children with ASC, which can result in meltdowns, making the diagnostic process challenging. There should be provision for children with ASC, who can have sensory, behavioural and communication needs, in the same way that analgesia is provided for children in pain. This article promotes a multi-strategy approach to making reasonable adjustments to help meet the needs of these children and provide them with a positive hospital experience.

[Supporting an ASD child with digital tools]. / Accompagner l'enfant avec autisme grâce aux outils numériques.

Autism spectrum disorders lead to a long-term and severe impairment of communication and social interactions. The expansion of information and communication technologies, through digital applications which can be used on different devices, can be used to support these functions necessary for the development of children with ASD. Applications, serious games and even humanoid robots help to boost children's interest in learning. They must however form part of a broader range of therapies.

Declarative verbal memory impairments in middle-aged women who are caregivers of offspring with autism spectrum disorders: The role of negative affect and testosterone.

Caring for offspring diagnosed with a chronic psychological disorder such as autism spectrum disorder (ASD) is used in research as a model of chronic stress. This chronic stress has been reported to have deleterious effects on caregivers' cognition, particularly in verbal declarative memory. Moreover, such cognitive decline may be mediated by testosterone (T) levels and negative affect, understood as depressive mood together with high anxiety and anger. This study aimed to compare declarative memory function in middle-aged women who were caregivers for individuals with ASD (n = 24; mean age = 45) and female controls (n = 22; mean age = 45), using a standardised memory test (Rey's Auditory Verbal Learning Test). It also sought to examine the role of care recipient characteristics, negative mood and T levels in memory impairments. ASD caregivers were highly sensitive to proactive interference and verbal forgetting. In addition, they had higher negative affect and T levels, both of which have been associated with poorer verbal memory performance. Moreover, the number of years of caregiving affected memory performance and negative affect, especially, in terms of anger feelings. On the other hand, T levels in caregivers had a curvilinear relationship with verbal memory performance; that is, increases in T were associated with improvements in verbal memory performance up to a certain point, but subsequently, memory performance decreased with increasing T. Chronic stress may produce disturbances in mood and hormonal levels, which in turn might increase the likelihood of developing declarative memory impairments although caregivers do not show a generalised decline in memory. These findings should be taken into account for understanding the impact of cognitive impairments on the ability to provide optimal caregiving.

Individual, parent and social-environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder.

INTRODUCTION: Compared to parents of adults with other types of disabilities, parents of adults with autism spectrum disorder (ASD) experience worse well-being. Thus, it is crucial to identify the individual, parent and social-environmental correlates of caregiving experiences among parents of adults with ASD. METHOD: For this study, 130 parents of adults with ASD responded to a survey about caregiving satisfaction, self-efficacy and burden. RESULTS: Greater future planning and community involvement related to more caregiving satisfaction and increased caregiving self-efficacy, respectively. Less choicemaking of the adult with ASD related to greater caregiving satisfaction and self-efficacy. Maladaptive behaviours and poor health of the adult with ASD related to greater caregiving burden. CONCLUSIONS: Implications for policymakers, practitioners and future research are discussed.