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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.

BackgroundFamily 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.MethodsThis 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.ResultsParents 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.ConclusionsThis 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 registrationClinicalTrials.gov, registration number NCT02359084, February 9, 2015.

Lay abstractEarly Intervention systems provide therapeutic services to families of young children birth to 3 years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery.

Implementation strategies are methods or techniques used to adopt, implement, and sustain evidence-based practices (EBPs). Implementation strategies are dynamic and may require adaptation to fit implementation contexts, especially in low-resource settings, which are most likely to serve racially and ethnically diverse patients. The framework for reporting adaptations and modifications to evidence-based implementation strategies (FRAME-IS) was used to document adaptations to implementation strategies to inform an optimization pilot of Access to Tailored Autism Integrated Care (ATTAIN; an integrated care model for children with autism and co-occurring mental health needs) in a federally qualified health center (FQHC) near the United States/Mexico border. Quantitative and qualitative data were collected from 36 primary care providers who participated in the initial ATTAIN feasibility pilot to inform adaptations. Adaptations were mapped to the FRAME-IS through an iterative template analysis to inform an optimization pilot at a FQHC 1-year from the start of the COVID-19 pandemic. Four implementation strategies (training and workflow reminders, provider/clinic champions, periodic reflections, and technical assistance) were employed during the feasibility pilot and were adapted for the optimization pilot to fit the needs of the FQHC and service delivery changes prompted by the pandemic. Findings demonstrate the utility of using the FRAME-IS to systematically inform EBP optimization in a FQHC providing care to underserved communities. Findings will inform future research studies implementing integrated mental health models in low-resourced primary care settings. Implementation outcomes and provider perceptions of ATTAIN at the FQHC are also reported. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child's likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child <9 years; and (e) screened for autism spectrum disorder. Ten search terms, developed using Google Search and parent panel recommendations, were used to search web and app tools in the United States, the United Kingdom, India, Australia, and Canada using Virtual Private Networks. Results were examined for attributes likely to benefit parents in marginalized communities, such as ease of searching, language versions, and reading level. The four terms most likely to identify any tools were "autism quiz," "autism screening tool," "does my child have autism," and "autism toddler." Three out of five searches contained autism spectrum disorder screening tools, as did one of 10 links or apps. Searches identified a total of 1475 websites and 919 apps, which yielded 23 unique tools. Most tools required continuous Internet access or offered only English, and many had high reading levels. In conclusion, screening tools are available, but they are not easily found. Barriers include inaccessibility to parents with limited literacy or limited English proficiency, and frequent encounters with games, advertisements, and user fees.

In this study, the relationships between child social functioning, parenting stress, and Part C Early Intervention (EI) enrollment were examined in 227 ethnically and racially diverse, low-income families of 15- to 27-month-old children. All toddlers in the sample were identified with or at high risk for developmental delay via universal screening in primary care; 41.4% were enrolled in EI at the time of study data collection and 83.3% ultimately enrolled in EI before turning 3 years old. Generalized linear mixed model results indicated no direct relationship between EI enrollment and parenting stress, but a significant inverse association was found between child social functioning and parenting stress ([beta] = -0.61, p = 0.005) that was moderated by EI enrollment (p < 0.001). This suggests potential benefits of timely referral and access to EI for families of children at risk of developmental delay in historically underserved communities. Furthermore, exploratory bivariate analyses indicated that clinically elevated parenting stress related to higher worry about the child's development and higher M-CHAT-R/F scores; EI enrollment was related to parents not working outside the home, older age of both parent and child, and lower child social functioning level.

Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis--a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p = 0.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p < 0.001) than later diagnostic group (t[6] = - 2.10, p = 0.037), and child functioning did not predict family impact (t[6] = -0.31, p = 0.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support.

Defining the central components of an intervention is critical for balancing fidelity with flexible implementation in both research settings and community practice. Implementation scientists distinguish an intervention's essential components (thought to cause clinical change) and adaptable periphery (recommended, but not necessary). While implementing core components with fidelity may be essential for effectiveness, requiring fidelity to the adaptable periphery may stifle innovation critical for personalizing care and achieving successful community implementation. No systematic method exists for defining essential components a priori. We present the CORE (COmponents & Rationales for Effectiveness) Fidelity Method--a novel method for defining key components of evidence-based interventions--and apply it to a case example of reciprocal imitation teaching, a parent-implemented social communication intervention. The CORE Fidelity Method involves three steps: (1) gathering information from published and unpublished materials; (2) synthesizing information, including empirical and hypothesized causal explanations of component effectiveness; and (3) drafting a CORE model and ensuring its ongoing use in implementation efforts. Benefits of this method include: (1) ensuring alignment between intervention and fidelity materials; (2) clarifying the scope of the adaptable periphery to optimize implementation; and (3) hypothesizing--and later, empirically validating--the intervention's active ingredients and their associated mechanisms of change.

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.

The U.S. Preventive Services Task Force (USPSTF) report on screening for Autism Spectrum Disorder (ASD) highlighted the need for research that examines the harms potentially associated with screening so as to assess the overall net benefit of universal screening. In response, this study engages qualitative, semi-structured interviews to generate a taxonomy outlining potential harms reported by parents and providers (pediatricians and Early Intervention providers) with experience in screening young children for ASD. Potential harms emerged including: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities. Respondents reported harms being experienced by the toddlers, parents, and providers. The harms reported highlight opportunities for providers to offer resources that mitigate the potential for these unintended consequences.

BackgroundRecent reviews of the use and application of implementation frameworks in implementation efforts highlight the limited use of frameworks, despite the value in doing so. As such, this article aims to provide recommendations to enhance the application of implementation frameworks, for implementation researchers, intermediaries, and practitioners.DiscussionIdeally, an implementation framework, or multiple frameworks should be used prior to and throughout an implementation effort. This includes both in implementation science research studies and in real-world implementation projects. To guide this application, outlined are ten recommendations for using implementation frameworks across the implementation process. The recommendations have been written in the rough chronological order of an implementation effort; however, we understand these may vary depending on the project or context: (1) select a suitable framework(s), (2) establish and maintain community stakeholder engagement and partnerships, (3) define issue and develop research or evaluation questions and hypotheses, (4) develop an implementation mechanistic process model or logic model, (5) select research and evaluation methods (6) determine implementation factors/determinants, (7) select and tailor, or develop, implementation strategy(s), (8) specify implementation outcomes and evaluate implementation, (9) use a framework(s) at micro level to conduct and tailor implementation, and (10) write the proposal and report. Ideally, a framework(s) would be applied to each of the recommendations. For this article, we begin by discussing each recommendation within the context of frameworks broadly, followed by specific examples using the Exploration, Preparation, Implementation, Sustainment (EPIS) framework.SummaryThe use of conceptual and theoretical frameworks provides a foundation from which generalizable implementation knowledge can be advanced. On the contrary, superficial use of frameworks hinders being able to use, learn from, and work sequentially to progress the field. Following the provided ten recommendations, we hope to assist researchers, intermediaries, and practitioners to improve the use of implementation science frameworks.

This study aimed to define the core components of Family Navigation for autism spectrum disorder, a promising intervention to reduce disparities in care for this population. Teams from four trials of Family Navigation for autism spectrum disorder completed the Template for Intervention Description and Replication checklist to outline intervention components. Through intervention component analysis and qualitative synthesis, we identified 11 core components across three domains: Training and Supervision, Navigator Tools, and Navigator Activities. We discuss the importance of identifying these core components and implications for future research and practice.

Significant disparities exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk of autism spectrum disorder; yet, little is known about parent experiences throughout the diagnostic process that may contribute to or help explain these disparities. The current study examined longitudinal trajectories of parenting stress, coping, and perceived family impact during the autism spectrum disorder diagnostic process among an ethnically and racially diverse low-income, urban sample, allowing for comparisons between Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress (X[superscript 2] = 5.35(1), p = 0.021), avoidant (X[superscript 2] = 9.66(1), p = 0.002) and approach (X[superscript 2] = 8.61(1), p = 0.003) coping, and negative family impact (X[superscript 2] = 5.39(1), p = 0.020) across time (main effects) compared with non-Hispanic families. Furthermore, there were differences in the change in use (Time Period x Ethnicity interaction effects) of both avoidant (X[superscript 2] = 10.80(3), p = 0.013) and approach (X[superscript 2] = 11.57(3), p = 0.009) coping, as well as negative family impact (X[superscript 2] = 9.81(3), p = 0.020), between Hispanic and non-Hispanic parents over time. These differences begin to shed light on the unique experiences of Hispanic parents. Because of the strengths that Hispanic families demonstrate, interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience in non-Hispanic families.

In 2016, the US Preventive Services Task Force concluded that there was "insufficient" ("I" statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of autism spectrum disorder screening, none adequately address the potential harms of autism spectrum disorder screening. This evidence gap may relate to confusion regarding how the US Preventive Services Task Force conceptualizes and evaluates potential harm. In this commentary, we explore how the US Preventive Services Task Force operationalizes harm and discuss how the potential for harm was described in the "I" statement on autism spectrum disorder screening. This information can serve as a guide for investigators working to study the benefits and harms of autism spectrum disorder screening in order to fill the research gaps cited by the US Preventive Services Task Force report. Finally, we recommend future research directions for exploring harms of autism spectrum disorder screening, filling cited research gaps, and ultimately ensuring that the benefits of autism spectrum disorder screening truly outweigh the harms for all children and their families.

The American Academy of Pediatrics recommends autism spectrum disorder screening at the 18- and 24-month well-child visits. However, despite widespread toddler screening, many children are not diagnosed until school age, and delayed diagnosis is more common among low-income and minority children. Offering autism spectrum disorder screening at preschool well-child checks might reduce disparities and lower the overall age of diagnosis and service initiation. However, screening tools that span the preschool ages and are tailored for primary care are needed.

There is growing interest in Family Navigation as an approach to improving access to care for children with autism spectrum disorder, yet little data exist on the implementation of Family Navigation. The aim of this study was to identify potential failures in implementing Family Navigation for children with autism spectrum disorder, using a failure modes and effects analysis. This mixed-methods study was set within a randomized controlled trial testing the effectiveness of Family Navigation in reducing the time from screening to diagnosis and treatment for autism spectrum disorder across three states. Using standard failure modes and effects analysis methodology, experts in Family Navigation for autism spectrum disorder (n = 9) rated potential failures in implementation on a 10-point scale in three categories: likelihood of the failure occurring, likelihood of not detecting the failure, and severity of failure. Ratings were then used to create a risk priority number for each failure. The failure modes and effects analysis detected five areas for potential "high priority" failures in implementation: (1) setting up community-based services, (2) initial family meeting, (3) training, (4) fidelity monitoring, and (5) attending testing appointments. Reasons for failure included families not receptive, scheduling, and insufficient training time. The process with the highest risk profile was "setting up community-based services." Failure in "attending testing appointment" was rated as the most severe potential failure. A number of potential failures in Family Navigation implementation--along with strategies for mitigation--were identified. These data can guide those working to implement Family Navigation for children with autism spectrum disorder.

In 2013, the National Institute of Mental Health funded five trials of unique, multicomponent, systems-based innovations designed to improve access to early screening, diagnosis, and treatment of autism spectrum disorder--collectively known as the Autism Spectrum Disorder Pediatric, Early Detection, Engagement, and Services Network. As part of an ongoing effort to pool data and learn from shared experience, we collected information across all studies about innovation components and implementation strategies. First, each study group completed standardized checklists based on the Template for Intervention Description and Replication and the Expert Recommendation for Implementing Change. Then, we interviewed principal and co-investigators of each study (n = 9) to further explore innovation components and assess barriers and facilitators to implementation. Innovation strategies were diverse (five different autism spectrum disorder screeners were used, 40% included early intervention trainings, 60% involved new technology). Common implementation strategies included developing stakeholder relationships and provider trainings. Barriers included inefficient systems of care, difficulty engaging families in the innovations, provider attitudes, and organizational culture (e.g. difficulty changing clinic processes). These findings suggest that--despite diverse settings and a variety of innovation content--common facilitators and challenges exist in implementing innovations to enhance access to early autism spectrum disorder screening, diagnosis, and treatment.

The purpose of this brief report is to share the results of a feasibility test of a six-session online class on dating violence prevention for autistic adolescents. The feasibility of delivering the online intervention was tested with a sample of N = 11 autistic youth ages 15-19 years old. The intervention was delivered once a week for 6 weeks. Participants completed self-report surveys at baseline and approximately 6 weeks after baseline. Participants also participated in one-on-one telephone interviews approximately 2 weeks after the intervention. It was feasible to teach an online class to autistic adolescents about healthy dating relationships and dating violence. Participant feedback suggested the class was acceptable to users. Further, we found it was feasible to collect self-report survey data on dating violence-related topics from autistic youth using an internet platform. Although the study was not designed to test intervention efficacy, we did observe changes in participant opinions in the desired direction about the healthiness of dating behaviors. Autistic youth have romantic and sexual relationships and deserve the benefit of healthy relationships education that is designed for them and effective for them. The results of this feasibility test suggest it is possible to deliver an online class to autistic youth and to collect dating abuse-related data from them online, indicating that a larger-scale, two-group evaluation study is feasible and warranted., Author(s): Emily F. Rothman [sup.1] , Megan Bair-Merritt [sup.2] , Sarabeth Broder-Fingert [sup.2] Author Affiliations: (1) grid.189504.1, 0000 0004 1936 7558, Boston University School of Public Health, , Crosstown Center, [...]

Mobile health (mHealth) screening tools for autism are gaining in prevalence, and have benefits such as video content and direct resources linkage. However, it is unclear whether such tools will ameliorate autism inequities or will help only those already advantaged in autism care. To investigate this issue, we conducted semi-structured qualitative interviews with 18 primary care and Early Intervention/Early Childhood Special Education providers in six US states. Providers were given hypothetical scenarios in which a family presents to care with results from one of 9 mHealth autism screening tools. Providers discussed their clinical approach and assessed the tool's fit with their patient/client population. Each transcript was audio-recorded, transcribed, and coded; a phenomenological approach was used to develop key themes. 4 themes and 18 subthemes emerged. These included Clinical and business factors (e.g. scope of practice concerns and clinical efficiency), Validity and trustworthiness (e.g. familiarity, data privacy/security), Family interaction quality (e.g. supporting family advocacy, provision of information, affecting family anxiety, and emotional support), and Accessibility (e.g. English proficiency/language issues, cultural inclusivity, and literacy/educational level). Providers suggested modifications to enhance equity, such as portraying diverse families, reducing the reading level of text, and making tools shorter to better fit clinical context. Families may find information about autism online, and health care and education providers may use online tools to screen for autism. However, we do not know if online autism screening tools are easily used by families and providers. We interviewed primary care and educational providers, asking them to review results from online tools that screen for autism. Providers had concerns about how usable and accessible these tools are for diverse families and suggested changes to make tools easier to use. [ABSTRACT FROM AUTHOR]

Numerous studies have reported that socioeconomic status (SES) predicts language skills in typically developing children. However, this association has been less systematically studied in children with developmental disabilities, such as autism spectrum disorder (ASD) or other developmental delays (DD). In the present study, we examined the association between SES, operationalized as maternal education attainment and health insurance status, and receptive and expressive language skills in a sample of children from lower SES, racial/ethnic minority families at increased 'clinical risk' for ASD based on early screening. Neither maternal education attainment nor health insurance status were significantly associated with children's language skills. Expressive and receptive language skills were significantly higher in children with DD compared to children with ASD. Findings differ from previously published work, highlighting the importance of study replication. Further research is needed to understand why the association between SES and children's language skills might vary across samples. Highlights: Examined association between socioeconomic status (SES) and language skills in children at 'clinical risk' for autism based on early screening.Found no associations between measures of SES and children's language skills.Results differ from previously published work, highlighting the importance of replicating studies with lower SES, racial/ethnic minority families. [ABSTRACT FROM AUTHOR]

Children with autism spectrum disorder (ASD) are at high risk for being overweight and obese. Little is known about how obesity in children with ASD is being addressed in primary care. This article reports findings from a survey completed by 327 general pediatricians, which included a fictional clinical vignette and Likert-scales assessing attitudes, practices, self-efficacy, and barriers to obesity management. Although the majority of respondents agreed pediatricians should be the main providers to manage obesity in children with ASD, few reported receiving adequate training to do so. Pediatricians were more likely to refer to developmental-behavioral pediatricians and dietitians for a child with ASD compared to a child without ASD. Higher self-efficacy was associated with increased weight-related counseling frequency by pediatricians.

In an effort to meet the needs of adults with autism spectrum disorder (ASD) while hospitalized, a team of experts and providers from Massachusetts General Hospital (MGH), MGH for Children as well as parents of individuals with ASD was sparked in 2013. This became a multidisciplinary collaborative, the MGH Autism Care Collaborative, to improve adult care for inpatients with ASD. The collaborative was created with three goals in mind: (1) to educate internal medicine adult inpatient providers and staff on the unique needs of adults with ASD when hospitalized; (2) to create ASD specific resources for internal medicine adult inpatient providers; and (3) to optimize patient care from admission to discharge among adults with ASD admitted to internal medicine services.

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.