Resiliency Intervention for Siblings of Children With Autism Spectrum Disorder: A Randomized Pilot Trial.

BACKGROUND /OBJECTIVES: Neurotypical siblings (NT siblings) of children with autism spectrum disorder (ASD) are at elevated risk for emotional distress and adjustment problems. Resiliency is the ability to cope and adapt with ongoing stressors. We conducted a randomized waitlist-controlled pilot trial to examine the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind-body resiliency group intervention for teen NT siblings of children with ASD. METHODS: We modified the Stress Management and Resiliency Training-Relaxation Response Resiliency Program for NT siblings of children with ASD (SibChat). We randomly assigned teens (aged 14-17) to immediate intervention (IG) versus waitlist control (WLC). The intervention included eight 60-minute weekly video conference group sessions. We assessed feasibility (enrollment, attendance, and retention) and acceptability (post treatment survey and weekly relaxation response practice). We explored group differences in pre-post change scores for 1) stress coping (Measure of Current Status-A) and 2) resiliency (Current Experiences Scale) using independent samples t tests and effect size calculations. RESULTS: We enrolled 83% of screened eligible teens. A total of 90% IG and 75% WLC participants attended at least 6/8 sessions. Among IG participants who completed the post treatment survey, 79% reported practicing relaxation response exercises at least "a few times a week". Comparing change in baseline to time 1, the IG showed better relative changes than the WLC group in stress coping (d = 0.60) and resiliency (d = 0.24). CONCLUSIONS: Our pilot trial showed promising feasibility, acceptability, and preliminary efficacy of SibChat on at least one of the 2 primary outcomes supporting further testing of the SibChat intervention. CLINICAL TRIAL REGISTRATION: US National Library of Medicine. REGISTRATION NUMBER: NCT04369417. https://clinicaltrials.gov/ct2/show/NCT04369417.

Acceptability of A Virtual Mind-Body Group Intervention for Teen Siblings of Children with Autism Spectrum Disorder.

Teenage siblings of children with autism spectrum disorder (ASD) are at risk of worse mental health outcomes than their peers, yet there have been few interventions focused on improving their psychosocial wellbeing. This study explored the acceptability of an 8-session virtual group mind-body resiliency intervention for teen siblings of children with ASD. We used mixed methods to assess quantitative and qualitative survey results. Participants reported that the intervention had the right amount of sessions (88%), structure (74%), and duration (89%). Most participants felt comfortable during sessions (74%), found it helpful to learn mind-body exercises (74%), and that the intervention helped in coping with stress (71%). Though participants were satisfied with the opportunity to meet peers, they desired more social connection.

Association of Neighborhood Characteristics With Pediatric Asthma.

OBJECTIVE: To examine associations between neighborhood characteristics and asthma prevalence and severity among low-income children in a large nationally representative sample. METHODS: Data source: 2018 National Survey of Children's Health, limited to low-income children, ages 0-17 years. We grouped parent responses about neighborhood characteristics into 5 scores: neighborhood support, safety, resources and quality, and a total score. Logistic regression compared rates and severity of asthma by neighborhood scores, adjusting for age, sex, race, and income. RESULTS: Of 8,653 low-income children, those living in neighborhoods with better total neighborhood scores were significantly less likely to have parent-reported asthma; OR = 0.9, 95% CI: 0.8-1.0; P = .02, with similar findings for children living in neighborhoods with higher support, safety, and quality scores. We found no associations between neighborhood scores and asthma severity in this population. CONCLUSIONS: Favorable neighborhoods are associated with lower parent-reported asthma prevalence in low-income children but not asthma severity. These data may support providers and policy makers interested in child asthma in addressing neighborhood improvement.

Emergency Department Utilization of Adolescents and Young Adults with Autism Spectrum Disorder.

This study examined emergency department (ED) utilization by adolescents and young adults, 12-30 years of age (AYA) with autism spectrum disorder (ASD) using the 2016 Healthcare Cost and Utilization Project/National Emergency Department Sample (HCUP/NEDS). We investigated the principal reason for an ED visit, presence of an ambulatory care sensitive condition (ACSC), and likelihood of hospital admission following ED encounter in ASD and Non-ASD cohorts. The ASD cohort had a higher proportion of ED visits for ACSC diagnoses as compared to the Non-ASD cohort. In addition, the likelihood of admission following an ED visit in the ASD cohort was 3.7 times greater than in the Non-ASD cohort.

Challenges and Growth: Lived Experience of Adolescents and Young Adults (AYA) with a Sibling with ASD.

Adolescent and young adult (AYA) siblings of individuals with autism experience unique challenges that can promote both growth and emotional maladjustment. This study explored sibling and parent reports of siblings' lived experiences and identified learning, stressors, and concerns from those experiences. 20 neurotypical (NT) AYA siblings (ages 13-24), and 21 parents were interviewed. Themes that emerged from the data analysis included: (1) learning, empathy, and compassion (2) relationship between the degree of functional impairment and the nature of the sibling relationship; (3) reluctance to share information about siblings with peers; (4) hypervigilance associated with unpredictable behavior; (5) worries and concerns about the future. These findings contribute to the existing literature on the impact and nature of neurotypical siblings' lived experience.

Facilitator Reflections on Shared Expertise and Adaptive Leadership in ECHO Autism: Center Engagement.

INTRODUCTION: Project Extension for Community Healthcare Outcomes (ECHO) is used to increase provider capacity in a wide range of health care specialties. ECHO Autism: Center Engagement is a program that promotes improvement in autism care by improving the management of autism care centers. The program's focus brought experienced clinicians together as both facilitators and participants in an ECHO series. ECHO Autism: Center Engagement facilitators devised a reflective writing exercise to prospectively study their experience leading this new curriculum. METHODS: Drawing on a qualitative thematic analysis of longitudinal reflective writing exercises from seven "Hub Team" facilitators, we describe how ECHO leaders cultivate a learning environment that emphasizes shared learning and acknowledges the expertise of ECHO participants. RESULTS: The analysis generated three main themes: (1) Hub Team facilitators valued reciprocal exchange with Spoke sites, a theme we name "shared learning," (2) Hub Team facilitators demonstrated high levels of awareness about their facilitation styles, and (3) Hub Team facilitators cultivated an interactional style they described as "all teach, all learn." DISCUSSION: Examining the experiences of ECHO facilitators produces qualitative accounts of continuing professional development that may not be captured in other program evaluation approaches. In the case of ECHO Autism: Center Engagement, facilitators cultivated an environment of shared learning, which acknowledged the expertise of both facilitators and participants. These findings are pertinent for scholars of continuing education in health professions who lead educational programs where participants and facilitators have high levels of overlap in their areas of expertise and years of experience.

Addressing a Gap in Healthcare Access for Transition-Age Youth with Autism: A Pilot Educational Intervention for Family Nurse Practitioner Students.

A mixed-methods randomized controlled trial pilot study evaluated an educational curriculum focused on the medical needs of transition-age youth (TAY) with autism (ASD) for family nurse practitioner students. Fourteen out of a cohort of 16 (87.5%) nursing students consented to participate in the study and were randomly assigned to either a waitlist control group (WLC) (n = 8) or an intervention group (INT) (n = 6). Three measures were used to determine pre- and post-intervention levels of self-efficacy, knowledge, and attitudes. Quantitative and qualitative data provide preliminary support that participation in intervention may improve and enhance knowledge and level of self-efficacy in working with TAY with ASD.

A Pilot Study of Autism-Specific Care Plans During Hospital Admission.

BACKGROUND AND OBJECTIVE: Hospital admissions can be difficult for patients with autism spectrum disorder (ASD). We created an autism-specific care plan (ACP) to help improve the hospital experience for patients with ASD, and we tested feasibility and acceptability and compared the experience of care for children with and without an ACP. METHODS: We performed a nonrandomized, retrospective chart review of all patients with ASD and a hospital admission from January 2013 to December 2013 (n = 142) to determine feasibility of the intervention. We then mailed surveys to all 142 families to measure experience with the ACP and to compare experience of care in those who did and did not have an ACP. Using multivariable linear regression we assessed the association of experience of care with ACP use while adjusting for covariates. RESULTS: The ACP was well tolerated by parents and used frequently by staff. Compared with parents who did not use the ACP, parents who used the ACP reported a better experience relating to their general hospital experience (B = 1.48, P < .001) and staff attention to their child's ASD-specific needs (B = 3.07, P < .001). CONCLUSIONS: According to this pilot study, care plans are feasible and hold promise to improve the experience of care for children with ASD and their families in the hospital setting.

Brief report: Emergency department utilization by individuals with autism.

To identify medical problems most commonly presenting to emergency departments among individuals with autism as compared to non-autistic persons across age groups. Data was obtained from the 2010 National Emergency Department database and was analyzed by age categories: 3-5, 6-11, 12-15, 16-18 and 19 years and older. Epilepsy emerged as the leading presenting diagnosis among those with Autism spectrum disorder (ASD), ages 16-19 years and 19 over. Psychiatric conditions were primary among ASD individuals aged 12-15 years, accounting for more than 11% of all visits. In this sample, age-related differences were noted in medical diagnoses among autistic individuals as compared to non-autistic persons.

Prevalence of overweight and obesity in a large clinical sample of children with autism.

BACKGROUND: Overweight and obesity are major pediatric public health problems in the United States; however, limited data exist on the prevalence and correlates of overnutrition in children with autism. METHODS: Through a large integrated health care system's patient database, we identified 6672 children ages 2 to 20 years with an assigned ICD-9 code of autism (299.0), Asperger syndrome (299.8), and control subjects from 2008 to 2011 who had at least 1 weight and height recorded in the same visit. We calculated age-adjusted, sex-adjusted body mass index and classified children as overweight (body mass index 85th to 95th percentile) or obese (≥ 95th percentile). We used multinomial logistic regression to compare the odds of overweight and obesity between groups. We then used logistic regression to evaluate factors associated with overweight and obesity in children with autism, including demographic and clinical characteristics. RESULTS: Compared to control subjects, children with autism and Asperger syndrome had significantly higher odds of overweight (odds ratio, 95% confidence interval: autism 2.24, 1.74-2.88; Asperger syndrome 1.49, 1.12-1.97) and obesity (autism 4.83, 3.85-6.06; Asperger syndrome 5.69, 4.50-7.21). Among children with autism, we found a higher odds of obesity in older children (aged 12-15 years 1.87, 1.33-2.63; aged 16-20 years 1.94, 1.39-2.71) compared to children aged 6 to 11 years. We also found higher odds of overweight and obesity in those with public insurance (overweight 1.54, 1.25-1.89; obese 1.16, 1.02-1.40) and with co-occurring sleep disorder (obese 1.23, 1.00-1.53). CONCLUSIONS: Children with autism and Asperger syndrome had significantly higher odds of overweight and obesity than control subjects. Older age, public insurance, and co-occurring sleep disorder were associated with overweight or obesity in this population.

Addressing dental fear in children with autism spectrum disorders: a randomized controlled pilot study using electronic screen media.

BACKGROUND: Dental care is a significant unmet health care need for children with autism spectrum disorders (ASD). Many children with ASD do not receive dental care because of fear associated with dental procedures; oftentimes they require general anesthesia for regular dental procedures, placing them at risk of associated complications. Many children with ASD have a strong preference for visual stimuli, particularly electronic screen media. The use of visual teaching materials is a fundamental principle in designing educational programs for children with ASD. PURPOSE: To determine if an innovative strategy using 2 types of electronic screen media was feasible and beneficial in reducing fear and uncooperative behaviors in children with ASD undergoing dental visits. METHODS: We conducted a randomized controlled trial at Boston Children's Hospital dental clinic. Eighty (80) children aged 7 to 17 years with a known diagnosis of ASD and history of dental fear were enrolled in the study. Each child completed 2 preventive dental visits that were scheduled 6 months apart (visit 1 and visit 2). After visit 1, subjects were randomly assigned to 1 of 4 groups: (1) group A, control (usual care); (2) group B, treatment (video peer modeling that involved watching a DVD recording of a typically developing child undergoing a dental visit); (3) group C, treatment (video goggles that involved watching a favorite movie during the dental visit using sunglass-style video eyewear); and (4) group D, treatment (video peer modeling plus video goggles). Subjects who refused or were unable to wear the goggles watched the movie using a handheld portable DVD player. During both visits, the subject's level of anxiety and behavior were measured using the Venham Anxiety and Behavior Scales. Analyses of variance and Fisher's exact tests compared baseline characteristics across groups. Using intention to treat approach, repeated measures analyses were employed to test whether the outcomes differed significantly: (1) between visits 1 and 2 within each group and (2) between each intervention group and the control group over time (an interaction). RESULTS: Between visits 1 and 2, mean anxiety and behavior scores decreased significantly by 0.8 points (P = .03) for subjects within groups C and D. Significant changes were not observed within groups A and B. Mean anxiety and behavior scores did not differ significantly between groups over time, although group A versus C pairwise comparisons showed a trend toward significance (P = .06). CONCLUSION: These findings suggest that certain electronic screen media technologies may be useful tools for reducing fear and uncooperative behaviors among children with ASD undergoing dental visits. Further studies are needed to assess the efficacy of these strategies using larger sample sizes. Findings from future studies could be relevant for nondental providers who care for children with ASD in other medical settings.

The needs of hospitalized patients with autism spectrum disorders: a parent survey.

OBJECTIVE: This survey assessed the in-hospital needs of patients diagnosed with autism spectrum disorders (ASDs). METHODS: Parents were recruited to complete a 21-item survey about the needs of their child with an ASD while in the hospital. ASD diagnosis was reported by parents at the time of the survey. The results of the survey were analyzed and evaluated in 3 distinct categories of need. RESULTS: We documented a range of responses associated with ASD-specific needs during hospitalization. Common concerns included child safety and the importance of acknowledging individual communication methods. CONCLUSIONS: In a population of children with ASDs, parents report a diverse range of needs while in the hospital. These data support the concept that a pragmatic assessment of individual communication and sensory differences is likely to be essential in the development of an appropriate inpatient care plan.