Although many siblings show resilience in the face of childhood cancer, others report clinical levels of distress during and after cancer treatment. Psychosocial care is recommended for siblings, but systematic screening to identify siblings currently experiencing or at-risk for psychosocial difficulties is not routine. As part of a program of research to develop feasible procedures for sibling screening, the current study used qualitative methods to gather the perspectives of parents and siblings regarding barriers to sibling psychosocial screening, ways to mitigate those barriers, and preferred screening procedures. A purposive sample of families of children with cancer (n ϭ 29 parents, n ϭ 17 siblings ages 8 -17) participated in semistructured qualitative interviews. Barriers to and preferences for sibling screening (e.g., timing, location, modality) were probed. Applied thematic analysis was used to distill findings. Families reported a strong need for sibling psychosocial screening but also reported barriers (i.e., family disruptions and separations, parental stress, and hesitancy to disclose emotional difficulties by both siblings and parents). Recommendations for addressing these barriers were provided. Sibling screening was preferred near diagnosis and every three months thereafter. Parent and sibling reports were both recommended. Preferred modalities included electronic questionnaire delivered in the hospital/clinic (parents) and clinical interview (siblings). In sum, families emphasized the importance of sibling psychosocial screening and suggested ways to achieve this. Involving families in the development of procedures to systematically screen siblings of children with cancer for psychosocial difficulties is an important step in developing feasible, effective strategies to identify siblings in need of clinical care.

Psychosocial screening requires sibling-specific screening items that correspond to preexisting risk (at diagnosis) and reactions to cancer (several months after diagnosis). Validated, sibling-specific screeners will facilitate identification of siblings with elevated psychosocial risk.

IMPORTANCEEarly identification of autism spectrum disorder (ASD) is associated with improved cognitive and behavioral outcomes. Targeted strategies are needed to support equitable access to diagnostic services to ensure that children from low-income and racial/ethnic minority families receive the benefits of early ASD identification and treatment.OBJECTIVE To test the efficacy of family navigation (FN), an individually tailored, culturally informed care management strategy, to increase the likelihood of achieving diagnostic ascertainment among young children at risk for ASD. DESIGN, SETTING, AND PARTICIPANTSThis randomized clinical trial of 249 families of children aged 15 to 27 months who had positive screening results for possible ASD was conducted in 11 urban primary care sites in 3 cities. Data collection occurred from February 24, 2015, through November 5, 2018. Statistical analysis was performed on an intent-to-treat basis from November 5, 2018, to July 27, 2020.INTERVENTIONS Families were randomized to FN or conventional care management (CCM). Families receiving FN were assigned a navigator who conducted community-based outreach to families to address structural barriers to care and support engagement in recommended services. Families receiving CCM were assigned to a care manager, who did limited telephone outreach. Families received FN or CCM after positive initial screening results and for 100 days after diagnostic ascertainment. MAIN OUTCOMES AND MEASURESThe primary outcome, diagnostic ascertainment, was measured as the number of days from randomization to completion of the child's clinical developmental evaluation, when a diagnosis of ASD or other developmental disorder was determined.RESULTS Among 250 families randomized, 249 were included in the primary analysis (174 boys [69.9%]; mean [SD] age, 22.0 [3.5] months; 205 [82.3%] publicly insured; 233 [93.6%] non-White). Children who received FN had a greater likelihood of reaching diagnostic ascertainment over the course of 1 year (FN, 108 of 126 [85.7%]; CCM, 94 of 123 [76.4%]; unadjusted hazard ratio [HR], 1.39 [95% CI, 1.05-1.84]). Site (Boston, New Haven, and Philadelphia) and ethnicity (Hispanic vs non-Hispanic) moderated the effect of FN (treatment × site interaction; P = .03; Boston: HR, 2.07 [95% CI, 1.31-3.26]; New Haven: HR, 1.91 [95% CI, 0.94-3.89]; and Philadelphia: HR, 0.91 [95% CI, 0.60-1.37]) (treatment × ethnicity interaction; P < .001; Hispanic families: HR, 2.81 [95% CI, 2.23-3.54] vs non-Hispanic families: HR, 1.49 [95% CI,). The magnitude of FN's effect was significantly greater among Hispanic families than among non-Hispanic families (diagnostic ascertainment among Hispanic families: FN, 90.9% [30 of 33], and CCM, 53.3% [16 of 30]; vs non-Hispanic families: FN, 89.7% [35 of 39], and CCM, 77.5% [31 of 40]). CONCLUSIONS AND RELEVANCEFamily navigation improved the likelihood of diagnostic ascertainment among children from racial/ethnic minority, low-income families who were detected as at risk for ASD in primary care. Results suggest ...

Attending preferentially to social information in the environment is important in developing socio-communicative skills and language. Research using eye tracking to explore how individuals with autism spectrum disorder deploy visual attention has increased exponentially in the past decade; however, studies have typically not included minimally verbal participants. In this study, we compared 37 minimally verbal children and adolescents with autism spectrum disorder with 34 age-matched verbally fluent individuals with autism spectrum disorder in how they viewed a brief video in which a young woman, surrounded by interesting objects, engages the viewer, and later reacts with expected or unexpected gaze-shifts toward the objects. While both groups spent comparable amounts of time looking at different parts of the scene and looked longer at the person than at the objects, the minimally verbal autism spectrum disorder group spent significantly less time looking at the person’s face during the episodes where gaze following—a precursor of joint attention—was critical for interpreting her behavior. Proportional looking-time toward key areas of interest in some episodes correlated with receptive language measures. These findings underscore the connections between social attention and the development of communicative abilities in autism spectrum disorder.

BackgroundDelivery of behavioral interventions is complex, as the majority of interventions consist of multiple components used either simultaneously, sequentially, or both. The importance of clearly delineating delivery strategies within these complex interventions—and furthermore understanding the impact of each strategy on effectiveness—has recently emerged as an important facet of intervention research. Yet, few methodologies exist to prospectively test the effectiveness of delivery strategies and how they impact implementation. In the current paper, we describe a study protocol for a large randomized controlled trial in which we will use the Multiphase Optimization Strategy (MOST), a novel framework developed to optimize interventions, i.e., to test the effectiveness of intervention delivery strategies using a factorial design. We apply this framework to delivery of Family Navigation (FN), an evidence-based care management strategy designed to reduce disparities and improve access to behavioral health services, and test four components related to its implementation.Methods/designThe MOST framework contains three distinct phases: Preparation, Optimization, and Evaluation. The Preparation phase for this study occurred previously. The current study consists of the Optimization and Evaluation phases. Children aged 3-to-12 years old who are detected as “at-risk” for behavioral health disorders (n = 304) at a large, urban federally qualified community health center will be referred to a Family Partner—a bicultural, bilingual member of the community with training in behavioral health and systems navigation—who will perform FN. Families will then be randomized to one of 16 possible combinations of FN delivery strategies (2 × 2 × 2× 2 factorial design). The primary outcome measure will be achieving a family-centered goal related to behavioral health services within 90 days of randomization. Implementation data on the fidelity, acceptability, feasibility, and cost of each strategy will also be collected. Results from the primary and secondary outcomes will be reviewed by our team of stakeholders to optimize FN delivery for implementation and dissemination based on effectiveness, efficiency, and cost.DiscussionIn this protocol paper, we describe how the MOST framework can be used to improve intervention delivery. These methods will be useful for future studies testing intervention delivery strategies and their impact on implementation.Trial registrationClinicalTrials.gov, NCT03569449. Registered on 26 June 2018.