Health Insurance Navigation Tools Intervention: A Pilot Trial Within the Childhood Cancer Survivor Study.

PURPOSE: Childhood cancer survivors are at increased risk for underinsurance and health insurance-related financial burden. Interventions targeting health insurance literacy (HIL) to improve the ability to understand and use health insurance are needed. METHODS: We codeveloped a four-session health insurance navigation tools (HINT) intervention, delivered synchronously by a patient navigator, and a corresponding booklet. We conducted a randomized pilot trial with survivors from the Childhood Cancer Survivor Study comparing HINT with enhanced usual care (EUC; booklet). We assessed feasibility, acceptability, and preliminary efficacy (HIL, primary outcome; knowledge and confidence with health insurance terms and activity) on a 5-month survey and exit interviews. RESULTS: Among 231 invited, 82 (32.5%) survivors enrolled (53.7% female; median age 39 years, 75.6% had employer-sponsored insurance). Baseline HIL scores were low (mean = 28.5; 16-64; lower scores better); many lacked knowledge of Affordable Care Act (ACA) provisions. 80.5% completed four HINT sessions, and 93.9% completed the follow-up survey. Participants rated HINT's helpfulness a mean of 8.9 (0-10). Exit interviews confirmed HINT's acceptability, specifically its virtual and personalized delivery and helpfulness in building confidence in understanding one's coverage. Compared with EUC, HINT significantly improved HIL (effect size = 0.94. P < .001), ACA provisions knowledge (effect size = 0.73, P = .003), psychological financial hardship (effect size = 0.64, P < .006), and health insurance satisfaction (effect size = 0.55, P = .03). CONCLUSION: Results support the feasibility and acceptability of a virtual health insurance navigation program targeted for childhood survivors to improve HIL. Randomized trials to assess the efficacy and sustainability of health insurance navigation on HIL and financial burden are needed.

Development and feasibility of a virtual, synchronous mind-body resiliency intervention for fathers of children and youth with special healthcare needs.

Background: Fathers of children and youth with special healthcare needs (FCYSHCN) are an overlooked population at risk for chronic stress. Mind-body practices offer a patient-centered approach to foster coping and resiliency, yet low engagement from fathers in existing programs suggests adaptation is needed. This multiphase study examines the feasibility of a synchronous, virtual mind-body intervention adapted for FCYSHCN. Methods: 31 FCYSHCN were recruited online via community partners and recruitment portals in an academic medical center in Boston, MA. Phase 1 consisted of individual interviews (N = 17) to determine fathers' stressors, coping strategies, program needs, and suggested adaptations to the intervention protocol. The Phase 2 single arm pilot feasibility trial (N = 14) consisted of eight weekly 60-minute group sessions delivered virtually. Primary feasibility metrics were attendance (benchmark: mean=6 sessions) and electronic survey completion at baseline and post-intervention. Acceptability was assessed using post-session ratings of program satisfaction (4-point Likert scale; scores ≥3 coded as helpful) and helpfulness (e.g., group structure). Exploratory outcomes included validated measures of stress coping, resiliency, parental stress, depression, anxiety, which were analyzed using paired-samples t-tests (alpha=.05) to generate effect sizes (η2). Results: In Phase 1, FCYSHCN discussed primary stressors (e.g., perceived inadequacy as a father) and multifaceted impacts of these stressors on physical, cognitive, emotional, and social wellbeing. Fathers also described coping strategies deemed helpful (e.g., humor) and unhelpful (e.g., "shutting down" from others). Qualitative findings informed intervention modifications. In Phase 2, most FCYSHCN (79%) attended ≥ 6 intervention sessions (mean=7). Follow-up survey completion was high (86%). Session satisfaction was high, with 7/8 sessions rated as helpful by most fathers. Program components deemed most helpful were the group structure, virtual delivery, exposure to a variety of relaxation and meditation skills, and the length of sessions. Although we were not powered to observe pre-post change, stress coping improved (p = .02, η2 = 0.42) and confidence increased in applying relaxation (p = .04, η2 = 0.34) and assertiveness techniques (p = .05, η2 = 0.31). Conclusions: The first mind-body resiliency program for FCYSHCN is feasible and acceptable. Further testing is warranted in randomized trials with diverse samples of fathers, an appropriate comparison arm, and longitudinal assessments of psychosocial and biobehavioral outcomes.

Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014-2018.

OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

Effects of physical exercise, LEGO, and Minecraft activities on anxiety in underserved children with autism: Study design and methodological strategies.

Anxiety is a common comorbidity for individuals with ASD, and there is some preliminary data about the efficacy of physical exercise to alleviate anxiety. However, we are not aware of any studies that have compared the effects of a physical exercise program on anxiety in underserved children with ASD using a randomized controlled research design. This paper describes a method to evaluate and compare the efficacy of an 8-week physical exercise intervention with a sedentary play intervention to alleviate anxiety in young children with autism spectrum disorders (ASD) from underserved backgrounds. We assessed anxiety and its physical symptoms using the parent-rated Child Behavior Checklist DSM-5 anxiety (CBCL DSM-5) subscale, the child-rated Screen for Childhood Anxiety Related Emotional Disorder (SCARED), the parent-rated Child's Sleep Habits Questionnaire (CSHQ), and salivary cortisol. We also utilized the Physical Activity Questionnaire for Older Children (PAQ-C) to assess physical activity level and identify compounds. Unique components of this study include: •Implementation of novel physical exercise and sedentary play interventions that have been designed for children with ASD.•Recruitment of predominantly underserved and non-English speaking families.

Provider Perspectives on Telehealth Services for Children With Autism Spectrum Disorder During the Coronavirus Disease 2019 Pandemic.

OBJECTIVE: The purpose of the current study was to explore provider perspectives on the strengths and challenges of telehealth services (e.g., behavioral interventions, physical, speech, and occupational therapy, medication management) for children with autism spectrum disorder during coronavirus disease 2019 related shutdowns. METHODS: From September 2020 to May 2021, we conducted qualitative interviews with 35 providers across multiple disciplines from 17 sites in the Autism Care Network. Qualitative data were analyzed using a framework approach and common themes were identified. RESULTS: Providers across clinical disciplines identified strengths of the virtual model, such as its flexibility and the opportunity it provided to see children in their home environment. They also indicated that some interventions worked better virtually than others, and that there were several factors that impacted their success. Respondents were generally satisfied providing parent-mediated interventions but expressed mixed satisfaction in using telehealth for direct-to-patient care. CONCLUSIONS: Results suggest that telehealth services for children with autism spectrum disorder could be a helpful tool in decreasing barriers and improving service delivery, especially when tailored to the individual needs of the patient. More research is needed on the factors contributing to its success in order to eventually inform clinical guidelines regarding the prioritization of children seen for in-person visits.

Examining Health Conditions, Impairments, and Quality of Life for Pediatric Feeding Disorders.

By understanding health conditions, impairments, and impact on quality of life for pediatric feeding disorders, assessment and treatment approaches can target multiple levels of health-related domains that improve child health and well-being. The purpose of this study was to characterize medical diagnoses and feeding impairments for children with feeding disorders; examine child quality of life and caregiver impact; and compare quality of life differences between children with feeding disorders and children with other conditions. A cross-sectional study was conducted in the Greater Boston Area, between October 2017 and June 2018. Fifty children with a feeding disorder diagnosis, ages 2-5 years, were enrolled. Demographic and clinical data were abstracted from the electronic health record to characterize medical diagnoses and impairments. Parents completed the Pediatric Quality of Life Generic Core Scales 4.0 (PedsQL) and the Feeding/Swallowing Impact Survey (FS-IS) to understand child quality of life and caregiver impact. We calculated descriptive statistics across the medical diagnosis and impairment groups, and for the surveys. Children presented with heterogeneous medical diagnoses and feeding impairments. We found a mean (SD) total score of 72.82(19.21) on the PedsQL and 2.33(0.89) on the FS-IS demonstrating that children with feeding disorders presented with poor quality of life and their caregivers were negatively impacted by their feeding difficulties. By understanding medical diagnoses, impairments, and quality of life, assessment and treatment methods can be tailored to children's specific needs, as well as address the overall wellbeing of children and their families.

Optimizing Parent Training to Improve Oral Health Behavior and Outcomes in Underserved Children with Autism Spectrum Disorder.

A randomized controlled trial established initial efficacy of a novel parent training (PT) intervention for improving oral hygiene and oral health in underserved children with ASD (Fenning et al., 2022), a population at risk for unmet dental needs. The present study describes our emic approach to PT development alongside treatment outcome data examining feasibility, acceptability, and engagement. Families with Medicaid-eligible children with ASD ages 3 to 13 years (85% male, 62% with intellectual disability) were assigned to receive PT (n = 60) or a psychoeducational toolkit (n = 59). Results indicate strong retention, fidelity, and adherence, with quantitative and qualitative metrics revealing high treatment satisfaction and utilization. Discussion focuses on implications for individualizing treatment to optimize engagement of underrepresented families.

Annual Days With a Health Care Encounter for Children and Youth Enrolled in Medicaid: A Multistate Analysis.

OBJECTIVE: To assess the number of days that children experienced a health care encounter and associations between chronic condition types and health care encounters. METHODS: Retrospective analysis of data from 5,082,231 children ages 0 to 18 years enrolled in Medicaid during 2017 in 12 US states contained in the IBM Watson Marketscan Medicaid Database. We counted and categorized enrollees' encounter days, defined as unique days a child had a health care visit, by type of health service. We used International Classification of Disease-10 diagnosis code categories from Agency for Healthcare Research and Quality's Chronic Condition Indicator System to identify chronic mental and physical health conditions. RESULTS: Median (interquartile range [IQR]) annual encounter days was 6 (2-13). Children in the 91st to 98th and ≥99th percentiles for encounter days experienced a median of 49 (IQR 38-70) and 229 (IQR 181, 309) days, respectively; these children accounted for 52.6% of days for the cohort. As encounter days increased from the 25th to >90th percentile, the percentage of children with co-existing mental and physical health conditions increased from <0.1% to 47.4% (P < .001). Outpatient visits accounted for a total of 68.3% and 62.2% of days for children the 91st to 98th and ≥99th percentiles. CONCLUSION: Ten percent of children enrolled in Medicaid averaged health care encounters at least 1 day per week; 1% experienced health care encounters on most weekdays. Further investigation is needed to understand how families perceive frequent health care encounters, including how to facilitate their children's care in the most feasible way.

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.

Keys to Achieving Clinically Important Weight Loss: Perceptions of Responders and Nonresponders in the Clinic and Community Approaches to Healthy Weight Trial.

Background: Despite modest mean body mass index (BMI) improvements in pediatric weight management interventions (PWMIs), some children are more and less successful in achieving a healthier weight. We sought to understand key behavior modifications and strategies used to overcome barriers that led to success or nonresponse. Methods: Using a semistructured guide, we conducted interviews in English and Spanish to explore the perspectives of caregivers whose children responded (BMI z-score change of greater than or equal to -0.2 units over 1 year) or did not respond (≥5% increase in % of the 95th percentile for BMI over 1 year) to a PWMI. Interviews were recorded, transcribed, and then coded using the framework approach. Researchers met regularly to review coding, content, and emerging themes. Results: We reached thematic saturation after interviewing the caregivers of 14 responders and 16 nonresponders and identified 7 themes as key elements of a positive response: (1) positive parenting approach; (2) application and practice of new information; (3) higher agency for change; (4) management of unmet social needs through creative solutions; (5) promoting mindful eating; (6) family alignment on health behaviors; and (7) mitigation of weight stigma. Conclusion: The effectiveness of PWMI may be enhanced by incorporating curricular elements that specifically promote the approaches identified among responders in this study. Similarly, lessons can be learned from nonresponders, so clinicians can identify and help early on when behaviors associated with nonresponse are seen. Clinical Trial Registration number: ClinicalTrials.gov: NCT03012126.

Multi-sector stakeholder's perceptions of determinants of successful implementation of a pediatric weight management intervention.

Background: Multi-sector stakeholder engagement is essential in the successful implementation, dissemination, and sustainability of pediatric weight management interventions (PWMI), particularly in low-income settings where sustainability relies on external policies and reimbursement. The objective of this study was to engage stakeholders (1) to inform the creation of the intervention with adaptations needed for a successful PWMI in a primary care and community setting and (2) to identify barriers and facilitators to implementation and dissemination. Methods: We sought to examine the perspectives of local, state, and national clinic and community stakeholders during the pre-implementation period of a two-arm, randomized trial of a Health Weight Clinic PWMI conducted in two health centers and a modified-Healthy Weight and Your Child PWMI at two local YMCAs that serve a predominantly lower income, Hispanic community. The Consolidated Framework for Implementation Research interview guide served as a template for the study but was modified to fit the PWMIs and the various professional roles. Interviews were transcribed and analyzed using the framework analysis approach and themes were linked to the CFIR domains and constructs. Results: Twenty-six stakeholders perceived the following as needed components of a PWMI: a formal curriculum with illustrative examples, a patient- and family-centered program, group visits, and high-quality multidisciplinary personnel. These findings led to the creation of a group visit curriculum, implementation trainings and cross-site collaborative technical assistance. Additionally, creating partnerships between community and clinical organizations, and addressing patient barriers and unmet social needs (i.e., transportation, food) were identified as facilitators to successful implementation. These results led to the creation of community resource guides, connections to community organizations, and screening and referring for unmet social needs. Perceived facilitators of dissemination included proving cost-effectiveness of the PWMI to inform insurance reimbursement for long-term sustainability. Therefore, we collected cost data and engaged with Medicaid officials to discuss reimbursement. Conclusion: Findings highlight the importance of engaging multi-sector stakeholders pre-implementation to ensure the components valued are included, ensuring the program minimizes barriers to participation, considering how staff training can improve implementation and how collected outcomes can inform sustainability and dissemination of PWMIs in clinic and community settings.

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.

Research on Family Health and Children and Youth With Special Health Care Needs.

Families of children and youth with special health care needs (CYSHCN) can face challenges with regard to health and well-being. Health systems are designed to support CYSHCN but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in our understanding of the impact of caregiving on family health and well-being and mechanisms of supporting families. In order to better understand and address these gaps, a national CYSHCN network developed a national research agenda to prioritize key areas of insufficient understanding of health and well-being for families of CYSHCN. Questions identified by the research agenda include: 1) How can family resiliency and adaptability be measured and improved? 2) How can we better assess family mental health needs and implement appropriate interventions? 3) What is the impact of family health on CYSHCN health outcomes? This paper describes a review of what is currently known regarding health for families of CYSHCN, gaps in the literature focused on the research agenda questions, and recommendations for future research. Based on the research agenda and current state of research for family health of CYSHCN, the authors recommend focusing on resiliency and adaptability as outcomes, using implementation science to address mental health concerns of family members and to further assess the impact of family health on health outcomes of CYSHCN. In addition, research should have a special focus on diverse populations of families and consider these questions in the context of different family structures.

Parent Training for Dental Care in Underserved Children With Autism: A Randomized Controlled Trial.

OBJECTIVE: Children with autism spectrum disorder (ASD) have difficulty participating in dental care and experience significant unmet dental needs. We examined the efficacy of parent training (PT) for improving oral hygiene and oral health in underserved children with ASD. METHOD: Families of Medicaid-eligible children with ASD (ages 3-13 years, 85% boys, 62% with intellectual disability) reporting difficulty with dental care participated in a 6-month randomized controlled trial comparing PT (n = 60) with a psychoeducational dental toolkit (n = 59). Primary outcomes were parent-reported frequency of twice-daily toothbrushing and dentist-rated visible plaque. Secondary outcomes included parent-reported child behavior problems during home oral hygiene and dentist-rated caries. Dentists were blind to intervention assignment. Analyses were intention to treat. RESULTS: Retention was high at posttreatment (3 months, 93%) and 6-month follow-up (90%). Compared with the toolkit intervention, PT was associated with increased twice-daily toothbrushing at 3 (78% vs 55%, respectively; P < .001) and 6 (78% vs 62%; P = .002) months and a reduction in plaque at 3 months (intervention effect, -0.19; 95% confidence interval [CI], -0.36 to -0.02; P = .03) and child problem behaviors at 3 (-0.90; 95% CI, -1.52 to -0.28; P = .005) and 6 (-0.77; 95% CI, -1.39 to -0.14; P = .02) months. Comparatively fewer caries developed in children receiving the PT intervention over 3 months (ratio of rate ratios, 0.73; 95% CI, 0.54 to 0.99; P = .04). CONCLUSIONS: PT represents a promising approach for improving oral hygiene and oral health in underserved children with ASD at risk for dental problems.

Clinician Perspectives on Telehealth Assessment of Autism Spectrum Disorder During the COVID-19 Pandemic.

This study examined clinician insights into telehealth assessment services for autism spectrum disorder implemented during the COVID-19 pandemic. 35 clinicians from multiple disciplines across 17 sites in the Autism Care Network were interviewed. Themes identified through qualitative analyses included factors related to confidence in diagnosis (impressions of in-home observation; child and family factors that affected diagnostic confidence; changes in rapport); patient and family factors related to telehealth (perceived family benefits of and barriers to telehealth; factors related to healthcare disparities; factors specific to non-native English speakers); and institutional and workplace factors related to transitioning to telehealth (institutional support; changes to efficacy, attendance, and work satisfaction). Results suggest that telehealth has potential to be an effective tool in autism assessment practice.

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.

Therapy use for U.S. school-aged children with developmental disabilities: State variation and determinants.

BACKGROUND: Therapy services can support developmental needs, improve social emotional outcomes, and reduce persistent health inequities for children with developmental disabilities (DD). Receipt of therapy services may be especially timely when children with DD are school-aged, once diagnosis has often occurred. Yet limited knowledge exists on geographic variability and determinants of therapy use among school-aged U.S. children with DD. OBJECTIVES: We aimed to (1) determine if therapy use varies significantly by state and (2) examine associations of health determinants with therapy use among U.S. school-aged children with DD. METHODS: This was a secondary analysis of 2016 and 2017 National Survey of Children's Health data. The sample included 9984 children with DD ages 6-17 years. We obtained odds ratios and predicted margins with 95% confidence intervals from multilevel logistic regression models to examine therapy use variation and determinants. RESULTS: Overall, 34.6% of children used therapy services. Therapy use varied significantly across states (σ2 = 0.11, SE = 0.04). Younger age, public insurance, functional limitations, individualized education program, frustration accessing services, and care coordination need were associated with higher adjusted odds of therapy access. In states with Medicaid Home and Community-Based Services waivers, higher estimated annual waiver cost was associated with lower adjusted odds of therapy use. CONCLUSIONS: Results highlight geographic disparities in therapy use and multilevel targets to increase therapy use for school-aged children with DD.

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.

Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.

LAY ABSTRACT: Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.

"I Don't Do Much Without Researching Things Myself": A Mixed Methods Study Exploring the Role of Parent Health Literacy in Autism Services Use for Young Children.

Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2-5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use.