Recommendations for post-implementation adaptations to optimize family navigation in pediatric primary care: a qualitative study with parents and navigators.

BACKGROUND: Family Navigation (FN) is an evidence-based care management intervention designed to reduce disparities in access to care by providing families with individually tailored support and care coordination. Early data suggest FN is effective, but effectiveness is significantly influenced by both contextual (e.g. setting) and individual (e.g., ethnicity) variables. To better understand how FN could be tailored to address this variability in effectiveness, we set forth to explore proposed adaptations to FN by both navigators and families who received FN. METHODS: This study was a nested qualitative study set within a larger randomized clinical trial of FN to improve access to autism diagnostic services in urban pediatric primary care practices in Massachusetts, Pennsylvania, and Connecticut serving low-income, racial and ethnic minority families. Following FN implementation, key informant interviews were conducted based on the Framework for Reporting Adaptations and Modifications-Expanded (FRAME) with a purposeful sample of parents of children who received FN (n = 21) and navigators (n = 7). Interviews were transcribed verbatim and were coded using framework-guided rapid analysis to categorize proposed adaptations to FN. RESULTS: Parents and navigators proposed 38 adaptations in four domains: 1) content of the intervention (n = 18), 2) context of the intervention (n = 10), 3) training and evaluation (n = 6), and 4) implementation and scale-up (n = 4). The most frequently endorsed adaptation recommendations focused on content (e.g., lengthening FN, providing parents with additional education on autism and parenting children with autism) and implementation (e.g., increasing access to navigation). Although probes targeted critical feedback, parents and navigators were overwhelmingly positive about FN. CONCLUSIONS: This study builds upon prior FN effectiveness and implementation research by providing concrete areas for adaptation and refinement of the intervention. Recommendations by parents and navigators have the potential to inform improvement of existing navigation programs and development of new programs in similarly underserved populations. These findings are critical as adaptation (cultural and otherwise) is an important principle in the field of health equity. Ultimately, adaptations will need to be tested to determine clinical and implementation effectiveness. TRIAL REGISTRATION: ClinicalTrials.gov, registration number NCT02359084, February 9, 2015.

Effect of Family Navigation on Participation in Part C Early Intervention.

OBJECTIVE: Part C Early Intervention (EI) services have been shown to reduce autism symptoms and promote healthy development among young children. However, EI participation remains low, particularly among children from structurally marginalized communities. We investigated whether family navigation (FN) improved EI initiation following positive primary care screening for autism compared to conventional care management (CCM). METHODS: We conducted a randomized clinical trial among 339 families of children (ages 15-27 months) who screened as having an increased likelihood for autism at 11 urban primary care sites in 3 cities. Families were randomized to FN or CCM. Families in the FN arm received community-based outreach from a navigator trained to support families to overcome structural barriers to autism evaluation and services. EI service records were obtained from state or local agencies. The primary outcome of this study, EI service participation, was measured as the number of days from randomization to the first EI appointment. RESULTS: EI service records were available for 271 children; 156 (57.6%) children were not engaged with EI at study enrollment. Children were followed for 100 days after diagnostic ascertainment or until age 3, when Part C EI eligibility ends; 65 (89%, 21 censored) children in the FN arm and 50 (79%, 13 censored) children in the CCM arm were newly engaged in EI. In Cox proportional hazards regression, families receiving FN were approximately 54% more likely to engage EI than those receiving CCM (1.54 (95% confidence interval: 1.09-2.19), P = .02). CONCLUSIONS: FN improved the likelihood of EI participation among urban families from marginalized communities.

Adapting Community Health Worker Care Models to Advance Mental Health Services Among LGBTQ Youth.

Lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth of color experience high rates of mental health disorders, yet they experience challenges to accessing mental health services. Community health worker (CHW) models of care have potential to promote equitable mental health services among LGBTQ youth. Our aim was to understand how CHW models could be adapted to better support LGBTQ youth of color in accessing mental health services. Semi-structured qualitative interviews were conducted with LGBTQ youth of color (n = 16), caregivers of LGBTQ youth (n = 11), and CHWs (n = 15) in Massachusetts and California. Interviews were coded by 8 members of the research team. A Rapid Qualitative Analysis was conducted to identify themes. Caregivers, youth, and CHWs all endorsed the value of CHW models for this population. They also almost universally suggested multiple adaptations are needed for the model to be effective. Four main categories of themes emerged related to intervention adaptations: (1) Why adaptations are needed for LGBTQ youth, (2) Who should serve as CHWs providing care, (3) How CHWs should be trained, and (4) What content needs to be included in the intervention. Broadly, findings suggest the relevance of having CHW models for LGBTQ youth of color to address stigma and discrimination experienced, access to culturally and linguistically relevant services, and the need for caregiver support of LGBTQ youth. CHWs need increased training in these areas.

Differences in Processes Underlying Autism Service Engagement Among Latina and Non-Latina Mothers.

Latino children on the autism spectrum experience less access to autism services and more barriers to service-use than non-Latino White children. Yet, existing research leaves unanswered questions about how cultural, family, and service system-level processes contribute to autism service-use disparities. This study aimed to qualitatively explore how Latina and non-Latina mothers experience similar encounters with autism services. Twenty Latina and non-Latina mothers completed semi-structured interviews regarding their experiences accessing services. Data were analyzed using applied thematic analysis. Ethnicity-based differences emerged in mothers' service-use motivations (i.e., desiring ongoing support vs. eventual departure), service evaluations (i.e., dissatisfaction vs. satisfaction), and service-seeking approaches (i.e., proactive vs. reactive). Findings illustrate how these processes underlying service engagement may contribute to service disparities for Latino children.

Cultural Influences on Sibling Relationships, Roles, and Self-Concept in the Context of Autism: Perspectives of Latino/a/x and non-Latino/a/x Siblings.

Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.

Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial From DBPNet.

Importance: Early 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 Participants: This 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 Measures: The 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, 1.45-1.53]). 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 Relevance: Family 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 differential effects of FN by site and ethnicity. Trial Registration: ClinicalTrials.gov Identifier: NCT02359084.

Mothers' Adjustment to Autism: Exploring the Roles of Autism Knowledge and Culture.

INTRODUCTION: Autism spectrum disorder (ASD) service-use disparities are well-documented among racial/ethnic minorities. Yet the nuanced impact that culture has on barriers to ASD service-use has not been sufficiently explored among these populations. This study explores the interrelatedness of culture and service-use barriers (i.e., parent ASD knowledge and adjustment) among culturally diverse mothers of children with ASD. METHODS: Twenty mothers from the Boston area participated in semi-structured qualitative interviews regarding their experiences with ASD. Applied thematic analysis was used to analyze data stratified by ethnicity (Latina vs. non-Latina) and nativity (immigrant vs. U.S. born). RESULTS: All mothers had similar gains in ASD knowledge after their children's ASD diagnoses. Non-Latina mothers (immigrant and U.S. born) felt empowered by their gained ASD knowledge, while Latina mothers struggled to fully accept their child's diagnosis and were unable to apply their general ASD knowledge to better understand their child's ASD-related needs. Culturally based stigma against ASD, including rejection from the Latino community and internalized self-blame, appeared to drive Latina mothers' beliefs that ASD is an invalid diagnosis for their child. CONCLUSION: Latina mothers' desire for community acceptance in the context of ASD stigma was a particularly salient cultural value among Latina mothers in this sample. Findings suggest that parent-focused ASD education programs may not sufficiently address ASD service-use disparities for Latina mothers. Rather, ASD education programs that address informational and cultural needs may better promote ASD adjustment among ethnic minority families.

Simulation and minimization: technical advances for factorial experiments designed to optimize clinical interventions.

BACKGROUND: The Multiphase Optimization Strategy (MOST) is designed to maximize the impact of clinical healthcare interventions, which are typically multicomponent and increasingly complex. MOST often relies on factorial experiments to identify which components of an intervention are most effective, efficient, and scalable. When assigning participants to conditions in factorial experiments, researchers must be careful to select the assignment procedure that will result in balanced sample sizes and equivalence of covariates across conditions while maintaining unpredictability. METHODS: In the context of a MOST optimization trial with a 2x2x2x2 factorial design, we used computer simulation to empirically test five subject allocation procedures: simple randomization, stratified randomization with permuted blocks, maximum tolerated imbalance (MTI), minimal sufficient balance (MSB), and minimization. We compared these methods across the 16 study cells with respect to sample size balance, equivalence on key covariates, and unpredictability. Leveraging an existing dataset to compare these procedures, we conducted 250 computerized simulations using bootstrap samples of 304 participants. RESULTS: Simple randomization, the most unpredictable procedure, generated poor sample balance and equivalence of covariates across the 16 study cells. Stratified randomization with permuted blocks performed well on stratified variables but resulted in poor equivalence on other covariates and poor balance. MTI, MSB, and minimization had higher complexity and cost. MTI resulted in balance close to pre-specified thresholds and a higher degree of unpredictability, but poor equivalence of covariates. MSB had 19.7% deterministic allocations, poor sample balance and improved equivalence on only a few covariates. Minimization was most successful in achieving balanced sample sizes and equivalence across a large number of covariates, but resulted in 34% deterministic allocations. Small differences in proportion of correct guesses were found across the procedures. CONCLUSIONS: Based on the computer simulation results and priorities within the study context, minimization with a random element was selected for the planned research study. Minimization with a random element, as well as computer simulation to make an informed randomization procedure choice, are utilized infrequently in randomized experiments but represent important technical advances that researchers implementing multi-arm and factorial studies should consider.

Using the Multiphase Optimization Strategy (MOST) framework to test intervention delivery strategies: a study protocol.

BACKGROUND: Delivery 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/DESIGN: The 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. DISCUSSION: In 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 REGISTRATION: ClinicalTrials.gov, NCT03569449. Registered on 26 June 2018.

Do minimally verbal and verbally fluent individuals with autism spectrum disorder differ in their viewing patterns of dynamic social scenes?

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.

Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents.

Objective: Although many siblings experience distress after a child's cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific screening instrument. Thus, this study developed sibling-specific screening modules in English and Spanish for the Psychosocial Assessment Tool (PAT), a well-validated screener of family psychosocial risk. Methods: A purposive sample of English- and Spanish-speaking parents of children with cancer (N = 29) completed cognitive interviews to provide in-depth feedback on the development of the new PAT sibling modules. Interviews were transcribed verbatim, cleaned, and analyzed using applied thematic analysis. Items were updated iteratively according to participants' feedback. Data collection continued until saturation was reached (i.e., all items were clear and valid). Results: Two sibling modules were developed to assess siblings' psychosocial risk at diagnosis (preexisting risk factors) and several months thereafter (reactions to cancer). Most prior PAT items were retained; however, parents recommended changes to improve screening format (separately assessing each sibling within the family and expanding response options to include "sometimes"), developmental sensitivity (developing or revising items for ages 0-2, 3-4, 5-9, and 10+ years), and content (adding items related to sibling-specific social support, global assessments of sibling risk, emotional/behavioral reactions to cancer, and social ecological factors such as family and school). Conclusions: 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.

Sustainability assessment and prioritisation of bottom ash management in Macao.

In Macao, about 7200 t yr-1 of bottom ash (BA) is generated and conventionally landfilled with construction waste. Because the properties of BA are similar to those of natural aggregates, it is suitable to be recycled as construction material. However, pre-treatment processes for BA reuse may require more resource input and may generate additional environmental impacts. Life cycle assessment, multi-media transport model analysis, cost-benefit analysis and the analytical hierarchy process were conducted to evaluate the impacts of current and potential BA management scenarios regarding environmental, economic, social and regulatory aspects. The five analysed scenarios are as follows: (0) BA buried with construction and demolition waste (current system); (1) pre-treated BA used to replace 25% of the natural aggregate in asphalt concrete; (2) pre-treated BA used to replace 25% of the natural aggregate in cement concrete; (3) pre-treated BA used to replace 25% of cement in cement concrete; and (4) pre-treated BA sent to China, blended with municipal solid waste for landfill. The results reveal the following ranking of the scenarios: 3 > 2 > 0 > 1 > 4. Scenario 3 shows the best conditions for BA recycling, because the quantity of cement concrete output is the highest and this brings the greatest economic benefits. Our use of integrated analysis provides multi-aspect investigations for BA management systems, particularly in accounting for site-specific characteristics. This approach is suitable for application in other non-western regions.