Norah L. Johnson

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.

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/fathers 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 fathers involvement in decision-making.

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.

Effects on Resilience of Caregivers of Persons With Autism Spectrum Disorder: The Role of Positive Cognitions

BACKGROUND: Approximately 2.8 million people in the United States are diagnosed with autism spectrum disorder (ASD). Family caregivers manage many aspects of their care, which is demanding, overwhelming, and can affect their mental health. OBJECTIVE: This study examined the effects of caregiver burden (risk factor) and positive cognitions (protective factors) on resourcefulness (resilience indicator) in 95 caregivers of persons with ASD. DESIGN: Descriptive, correlational, and cross-sectional. RESULTS: Positive cognitions explained 32% of the variance in resourcefulness, F(1, 93) = 44.49, p < .001, and as positive cognitions increased, caregivers’ resourcefulness increased. A substantial drop in the beta weight of caregiver burden from B = −.36 to −.04 when positive cognitions was entered the equation suggested that positive cognitions mediated the effect of caregiver burden on resourcefulness. CONCLUSION: The results support resilience theory and suggest a need for developing interventions to strengthen positive thinking among caregivers of persons with ASD.

Attributed Meanings and Strategies to Prevent Challenging Behaviors of Hospitalized Children With Autism: Two Perspectives

INTRODUCTION Understanding is limited of the meaning attributed to behaviors of children with autism spectrum disorder and strategies used to prevent challenging behaviors in the context of hospitalization. METHODS This qualitative study consisted of two focus groups (n = 10; five mothers and five health care providers [HCPs]). Transcripts were analyzed using the qualitative method of narrative inquiry. RESULTS The meaning attributed to behaviors by the mothers and the HCPs differed. The mothers attributed behaviors to the childs communication of frustration, hyperactivity, and self-calming. The HCPs attributed challenging behaviors to self-stimulation and child aggression. Strategies to prevent behaviors also differed. Mothers focused on preparation prior to hospitalization and attempts to partner with HCPs. HCPs identified fewer strategies and consulted mothers for strategies to manage challenging behaviors. DISCUSSION HCP and parent collaboration could lead to strategies to increase supports for children with autism spectrum disorder in the hospital to decrease their frustration and challenging behaviors.

Children With Developmental Disabilities at a Pediatric Hospital: Staff Education to Prevent and Manage Challenging Behaviors

Children with developmental disabilities may get frustrated in unpredictable hospital environments. Frustration may escalate to challenging behaviors, which are a safety concern and may contribute to staff and patient injuries, use of restraints, and procedure delay or cancelations. The purpose of this article was to describe a pilot staff education program on preventing and managing challenging behaviors of children with developmental disabilities at a pediatric hospital. The 2-hour-long education (1 hour on-line and 1 hour instructor led) content focused on family-centered care and communication skills, including verbal judo™ modified for use in the health care setting. Participants in the instructor-led sessions reported improved knowledge and decreased fear about caring for children with developmental disabilities. Relationships of the education and fewer staff injuries, fewer canceled procedures, and decreased use of restraints merit further study.

Evaluation of an Intimate Partner Violence Curriculum in a Pediatric Hospital

OBJECTIVE. Intimate partner violence harms victims as well as families and communities. Many barriers account for limited intimate partner violence screening by nurses. The purpose of this study was to measure how participation in a curriculum about screening parents for intimate partner violence, at a pediatric hospital, affects a nurses knowledge, attitudes, behaviors, and self-efficacy for intimate partner violence screening. METHODS. In this interventional, longitudinal study, data were collected before participation in an intimate partner violence screening curriculum, after participation, and 3 months later. The measurement tool was adapted from Maiuros (2000) Self-efficacy for Screening for Intimate Partner Violence Questionnaire. RESULTS. Sixty-eight pediatric nurses completed all aspects of the study. At baseline, 18 (27%) nurses self-reported seeing a parent with an injury, and of those only 7 (39%) followed up with intimate partner violence screening. Factor analysis was performed on the baseline Self-efficacy for Screening for Intimate Partner Violence Questionnaire by using varimax rotation. Five factors were identified: conflict, fear of offending parent, self-confidence, appropriateness, and attitude. Only fear of offending parent was significantly different from times 1 to 3, indicating that nurses were less fearful after the training. Cronbachs α value for the total questionnaire at baseline was .85. Nurses reported significant improvement (baseline to 3-month follow-up) in several self-efficacy items. CONCLUSIONS. Participation in a 30-minute curriculum on intimate partner violence screening was associated with improvements in self-efficacy and significantly lower fear of offending parents 3 months after training. Nurses also showed improvement in the perception of resources available for nurses to manage intimate partner violence. Thirty-minute hospital-based curriculums that include victim testimonial video and practice role-playing to simulate parent interactions are recommended.

Effect of a Social Script iPad Application for Children With Autism Going to Imaging

This randomized controlled trial feasibility study tested the effectiveness of an iPad® application (app) social script intervention for children with autism spectrum disorder (ASD) going to imaging and their parent (n=32 parent/child dyads). Parents of the children exposed to the app (n=16) had lower state anxiety compared to the parents whose children were not exposed to the app (n=16) (effect size 0.33). Children exposed to the app had fewer externalized challenging behaviors than the control group (effect size 0.56). The results demonstrate feasibility and efficacy of the intervention. Further study of the iPad app is warranted.

Autism Spectrum Disorder and the Child's Weight–Related Behaviors: A Parents' Perspective

To explore parent perspectives of how the attributes of their childs autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parents 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 childs challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths.

How to select the correct education strategy: when not to go online.

Screening for intimate partner violence is an important injury prevention strategy. Nurses who develop staff education, to promote screening, need to select a method that is sensitive to learners. Online learning, although convenient, is not well suited to sensitive topics such as screening for intimate partner violence. The purpose of this article is to describe a curriculum for intimate partner violence screening based on self-efficacy theory, which includes a hospital-produced video, a role play, and a discussion.