Children With Autism Spectrum Disorder at a Pediatric Hospital: A Systematic Review of the Literature

This review of literature describes the behaviors of hospitalized children with autism spectrum disorder (ASD) that health care providers find challenging. It also identifies strategies used to address these challenging behaviors. The systematic review of literature identified 34 articles from databases on health care of challenging behaviors of children with ASD. The review identified four categories of challenging behaviors (non-compliance, hyperactivity, sensory defensiveness, self-injury) and several strategies for reducing these behaviors. Partnering with parents to develop strategies is important for children with ASD to deliver timely and safe care

Increasing Autism Awareness in Inner-City Churches: A Brief Report

Autism diagnosis rates trail significantly in the African American community. This pre-test post-test pilot study evaluated an African American inner-city church health ambassadors (HAs) autism spectrum disorder (ASD) awareness training session. The participants included 12 HAs who attended the 1 hour training session organized by the National Baptist Convention, USA, Inc. Results of surveys showed higher mean scores post training for (1) HA attitudes about the potential for children to improve with applied behavior analysis therapy; (2) HA self-efficacy for having information about ASD screening materials; (3) strategies HAs could use to help parents/caregivers of children with developmental delays and challenging behaviors; (4) HA confidence in referrals for children with signs of ASD; (5) HA knowledge of measures to take to maximize a child\u27s chance of receiving an ASD evaluation; and (6) HA comfort for talking to parents about children with challenging behaviors. Several of these effects were maintained 3 months later. Findings underscore the usefulness of the intervention for increasing the dissemination of knowledge about ASD and the opportunity to positively affect ASD screening, early intervention, and policy standards applicable to this vulnerable population

Genomics and Autism Spectrum Disorder

Purpose: To present the current state of the evidence regarding translation of genetics (the study of single genes) and genomics (the study of all genes and gene-gene or gene-environment interactions) into health care of children with autism spectrum disorder (ASD). Methods: This article presents an overview of ASD as an international health challenge, the emerging science related to broad diagnostic criteria, and the role of the nurse in research, education, and practice. Findings: Much progress is being made in the understanding of genetics and genomics of ASD. Environmental factors are thought to contribute to the risk of developing ASD by interacting with a number of genes in different ways, thus suggesting causal heterogeneity. The rising identified prevalence of ASD, the changing diagnostic criteria for ASD, and the complexity of the core and associated features have made it difficult to define the ASD phenotype (observable behaviors that result from gene-environment interaction). Because early identification improves opportunities for intervention, researchers are looking for a useful biomarker to detect ASD. This search is complicated by the likelihood that there are multiple causes for multiple expressions that are defined as the autism spectrum. Conclusions: To date, genetic and genomic research on ASD have underscored the complexity of the causes of ASD indicating that there are very complex genetic processes involved that are still not well understood. Clinical Relevance: Nurses will benefit from new knowledge related to early identification, diagnosis, and implications for the family to promote early intervention. Families who have a child with ASD will require nursing support for advocacy for optimal health outcomes

Parents’ Perspectives on Shared Decision Making for Children With Solid Organ Transplants

Introduction The Institute of Medicine prioritizes active family and clinician participation in treatment decisions, known as shared decision making (SDM). In this article we report the decision-making experiences for parents of children who had a solid organ transplant. Method We performed a prospective longitudinal mixed methods study at five major U.S. children\u27s medical centers. Qualitative interview data were obtained at 3 weeks, 3 months, and 6 months after hospital discharge following the child\u27s transplant. Results Forty-eight parents participated in the study. Three themes were identified: (a) Parents expect to participate in SDM; (b) parents seek information to support their participation in SDM; and (c) attributes of providers\u27 professional practice facilitates SDM. SDM was facilitated when providers were knowledgeable, transparent, approachable, accessible, dependable, and supportive. Conclusions Parents expect to participate in SDM with their transplant team. Health care providers can intentionally use the six key attributes to engage parents in SDM. The results provide a framework to consider enhancing SDM in other chronic illness populations

Autism Spectrum Disorder: Parenting Stress, Family Functioning and Health-Related Quality of Life

The prevalence of Autism Spectrum Disorder (ASD) is 1 in 110 persons in the U.S. Both parents of children with ASD are under stress that may impact their health-related quality of life (HRQL) (physical and mental health). The purpose of the current study was to explore the relationship of parenting stress, support from family functioning and the HRQL (physical and mental health) of both parents. Female (n = 64) and male (n = 64) parents of children with ASD completed Web-based surveys examining parenting stress, family functioning, and physical and mental health. Results of a Wilcoxon signed-ranks test showed that female parent discrepant (D) scores between “what is” and “should be” family functioning were significantly larger than male parents, p = .002. Results of stepwise linear regression for the male-female partners showed that (1) higher female caregiving stress was related to lower female physical health (p \u3c .001), (2) a higher discrepancy score in family functioning predicted lower mental health (p \u3c .001), accounting for 31% of the variance for females and (3) male parent personal and family life stress (p \u3c .001) and family functioning discrepant (D) score (p \u3c .001) predicted poor mental health, with the discrepancy score accounting for 35% of the variance. These findings suggest that there may be differences in mothers\u27 and fathers\u27 perceptions and expectations about family functioning and this difference needs to be explored and applied when working with families of children with ASD. (PsycINFO Database Record (c) 2012 APA, all rights reserved

Lack of Father Involvement in Research on Children with Autism Spectrum Disorder: Maternal Parenting Stress and Family Functioning

Autism Spectrum Disorder (ASD) has an estimated prevalence of greater than 1% of people in the US. Caring for children with ASD is stressful and challenging for parents. The purpose of the study is to understand the ramifications of the findings of a spouse/father\u27s lack of participation for a study focused on stress and family functioning that attempted to recruit both parents of a child with ASD. The Kruskal-Wallis test compared medians of three groups of mothers of children with ASD in order to assess differences in parenting stress and family functioning discrepancy depending on their marital status and spouse survey participation. There were differences across the groups of mothers of children with ASD for the discrepancy in expectations for help, from the participants’ spouse or relatives, with family tasks, meeting the demands of other work responsibilities, child care, challenging behaviors, and school absences. Mothers of children with ASD are at risk for isolation and stress from negotiating family functions with the fathers of the children. Health care providers can assess for stress and family functioning and may anticipate different needs based on marital status and by father\u27s involvement in decision-making. Autism spectrum disorder (ASD) is a chronic neurodevelopmental disorder of communication, behavior, and socialization, with typical onset occurring before three years of age (American Psychiatric Association, 2000). Four times more common in boys than girls, the prevalence of ASD is increasing and is now estimated to be 1/88 people (\u3e1% of the US population) (Autism and Developmental Disabilities Monitoring Network Surveillance Principal Investigators, 2012). Persons with ASDs present with a range in severity of symptoms with the cause thought to be a combination of genetic predisposition and environmental factors (Hallmayer et al., 2011; Rutter, 2005). Although ASD is not curable, there are several treatment options with a range of evidence to support them (Agency for Healthcare Research and Quality [AHRQ], 2011)

Autism Spectrum Disorder and the Child\u27s Weight–Related Behaviors: A Parents\u27 Perspective

Purpose To explore parent perspectives of how the attributes of their child\u27s autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parent\u27s perception of the healthcare providers (HCP) influence on these weight-related behaviors. Design and method We conducted and audio-recorded telephone interviews with parents of children with ASD (n = 8) using a structured question guide. Data were transcribed and thematic analysis was conducted. Issues surrounding weight-related behaviors and parental strategies used were reported. Results Two overarching themes with eight subthemes emerged: (1) Challenges related to features of ASD (subthemes included fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects) and (2) Challenges related to the care of children with ASD (subthemes included lack of individualized care planning, picking your battles and the impact of ASD on family). Conclusion Strategies extracted from the parent narratives promoted both healthy and unhealthy weight-related behaviors. The key finding in this study is that some parents did not follow HCP guidance when they perceived that the HCP did not understand their particular situation. Practice Implications Implementation of healthy weight-related behaviors can be optimized when providers consider the child\u27s challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths

Translating Research to Practice for Children With Autism Spectrum Disorder: Part 2: Behavior Management in Home and Health Care Settings

Introduction Managing home and health care for children with autism spectrum disorder can be challenging because of the range of symptoms and behaviors exhibited. Method This article presents an overview of the emerging science related to the methods to foster family self-management of common concerns regarding activities of daily living and behaviors, as well as for the health care provider in primary and acute health care settings. Results Recommendations are provided to enhance the overall delivery of services, including understanding and managing a child\u27s challenging behaviors, and supporting family management of common activities of daily living and behaviors. Discussion Health care providers\u27 knowledge of evidence-based recommendations for providing care, supporting family self-management of common concerns, and referral heighten the likelihood of better outcomes for children with autism spectrum disorder

Resilience in Family Members of Persons with Autism Spectrum Disorder: A Review of the Literature

Worldwide, caregivers find caring for children with Autism Spectrum Disorder (ASD) challenging. Family members must manage many aspects of care giving, which is demanding, overwhelming, and can affect the family members’ mental health. However learning how to be resilient may help family members overcome the stress and burden associated with caring for a person with ASD. A search was completed in Medline, PsycINFO, Proquest, Web of Science, and CINAHL using the key words “autism,” “caregivers,” “mothers,” and “fathers,” alone and in combination. Inclusion criteria were English language articles reporting studies with samples of children with ASD, as distinct from children with other intellectual or developmental disabilities. Fifty-eight articles that met these inclusion criteria were summarized and, from those, the authors selected 22 articles that included indicators of resilience. This integrative review highlights current research on resilience in adult family members of persons with ASD. Indicators of resilience, risk factors, protective factors, and outcomes of resilience were identified. The review indicates that parents of children with ASD who possess indicators of resilience are better able to manage the adversity associated with caring for children with ASD. Thus, enhancing resilience among family members of persons with autism may be beneficial to both the caregivers and care recipients

“No One Could Calm Him Down”: Mothers’ Experience of Autism Diagnosis and Obtainment of Resources in an Urban Public School District

The purpose of this study was to explore the experience of accessing autism diagnosis and resources in a Midwest urban public school district for diverse mothers of children with autism spectrum disorder. Method: We employed thematic analysis using narrative inquiry methodology to analyze the data from 9 mothers (n = 5 African American, n = 2 Hispanic, and n = 2 White) who participated in a focus group. Results: Three themes were identified by the researchers: (a) late medical diagnosis (subthemes: problems that parents didn’t perceive as signs of autism spectrum disorder, making comparisons to other siblings or children), (b) negative communication experiences (subthemes: husband and wife, parent and educational professionals), and (c) coping strategies (subthemes: resources, prayer). Discussion: The mothers’ narratives indicated a strong need for advocacy and parent–school partnership