Using Novel Implementation Tools for Evidence-based Intervention Delivery (UNITED) across public service systems for three evidence-based autism interventions in under-resourced communities: study protocol.

BACKGROUND: There are a growing number of evidence-based interventions (EBIs) for autistic individuals, but few are successfully implemented with fidelity in under-resourced communities and with families from traditionally disenfranchised groups. Implementation science offers tools to increase EBI use in communities, but most implementation strategies are designed specific to a single EBI. It is not feasible to develop a new implementation strategy each time a new EBI is introduced in the community. Therefore, to test the effectiveness and generalizability of implementation strategies we are developing and testing a multifaceted implementation strategy with three EBIs concurrently. The goal of this protocol paper is to describe the randomized field trial of an implementation strategy for use across autism EBIs, diverse settings and participants, with the goal of increasing rapid uptake of effective practices to reach our most vulnerable children. METHODS: We developed a multifaceted implementation strategy called Using Novel Implementation Tools for Evidence-based intervention Delivery (UNITED) to facilitate the implementation and sustainment of three EBIs in under-resourced settings. We will compare fidelity to, and effectiveness of, each intervention [Mind the Gap (MTG), Remaking Recess (RR), Self-Determined Learning Model of Instruction (SDLMI)] with and without UNITED in a randomized field trial. Randomization will be stratified using a minimization allocation method. We will train community practitioners using remote delivery of modules specific to the intervention, and active coaching via Zoom for at least 6 sessions and up to 12 as dictated by each EBI. Our primary outcome is fidelity to each EBI, and our secondary outcome is at the child or family level (family empowerment for MTG, child peer social engagement for RR, and adolescent self-determination for SDLMI, respectively). We will measure progress through the implementation phases using the Stages of Implementation Completion and cost-effectiveness of UNITED. DISCUSSION: The results of this study will provide rigorous data on the effectiveness and generalizability of one relatively light-touch implementation strategy in increasing use of autism EBIs and associated outcomes in diverse under resourced public service settings for underrepresented autistic youth. TRIAL REGISTRATION: Mind the Gap: Clinicaltrials.gov Identifier:  NCT04972825 (Date registered July 22, 2021); Remaking Recess: Clinicaltrials.gov Identifier:  NCT04972838 (Date registered July 22, 2021); Self-Determined Learning Model of Instruction: Clinicaltrials.gov Identifier:  NCT04972851 (Date registered July 22, 2021).

Evidence Base Update for Autism Spectrum Disorder.

This evidence base update examines the level of empirical support for interventions for children with autism spectrum disorder (ASD) younger than 5 years old. It focuses on research published since a previous review in this journal (Rogers & Vismara, 2008 ). We identified psychological or behavioral interventions that had been manualized and evaluated in either (a) experimental or quasi-experimental group studies or (b) systematic reviews of single-subject studies. We extracted data from all studies that met these criteria and were published after the previous review. Interventions were categorized across two dimensions. First, primary theoretical principles included applied behavior analysis (ABA), developmental social-pragmatic (DSP), or both. Second, practice elements included scope (comprehensive or focused), modality (individual intervention with the child, parent training, or classrooms), and intervention targets (e.g., spoken language or alternative and augmentative communication). We classified two interventions as well-established (individual, comprehensive ABA and teacher-implemented, focused ABA + DSP), 3 as probably efficacious (individual, focused ABA for augmentative and alternative communication; individual, focused ABA + DSP; and focused DSP parent training), and 5 as possibly efficacious (individual, comprehensive ABA + DSP; comprehensive ABA classrooms; focused ABA for spoken communication; focused ABA parent training; and teacher-implemented, focused DSP). The evidence base for ASD interventions has grown substantially since 2008. An increasing number of interventions have some empirical support; others are emerging as potentially efficacious. Priorities for future research include improving outcome measures, developing interventions for understudied ASD symptoms (e.g., repetitive behaviors), pinpointing mechanisms of action in interventions, and adapting interventions for implementation with fidelity by community providers.

Building Better Bridges: Outcomes of a Community-Partnered New School Transition Intervention for Students on the Autism Spectrum.

New school transitions can be challenging for students on the autism spectrum. No published, evidence-based interventions exist to support families and teachers of students transitioning to elementary and secondary school during this critical period. Using Community Partnered Participatory Research, we developed Building Better Bridges (BBB), a caregiver coaching intervention that includes training on effective school communication, educational rights, advocacy, and child preparation strategies. We compared BBB (n = 83) to a module/resources-only comparison (n = 87) in a four-site randomized controlled trial in racially and ethnically diverse, under-resourced communities. In our intent-to-treat analysis, caregivers and teachers in BBB rated students' transitions to the new classroom as more positive, relative to the comparison group. Results suggest this low-cost intervention can improve the transition process for families and students at high risk of poor transitions.

COVID-19 Vaccine Equity and Access: Case Study for Health Care Chatbots.

BACKGROUND: Disparities in COVID-19 information and vaccine access have emerged during the pandemic. Individuals from historically excluded communities (eg, Black and Latin American) experience disproportionately negative health outcomes related to COVID-19. Community gaps in COVID-19 education, social, and health care services (including vaccines) should be prioritized as a critical effort to end the pandemic. Misinformation created by the politicization of COVID-19 and related public health measures has magnified the pandemic's challenges, including access to health care, vaccination and testing efforts, as well as personal protective equipment. Information and Communication Technology (ICT) has been demonstrated to reduce the gaps of marginalization in education and access among communities. Chatbots are an increasingly present example of ICTs, particularly in health care and in relation to the COVID-19 pandemic. OBJECTIVE: This project aimed to (1) follow an inclusive and theoretically driven design process to develop and test a COVID-19 information ICT bilingual (English and Spanish) chatbot tool named "Ana" and (2) characterize and evaluate user experiences of these innovative technologies. METHODS: Ana was developed following a multitheoretical framework, and the project team was comprised of public health experts, behavioral scientists, community members, and medical team. A total of 7 iterations of ß chatbots were tested, and a total of 22 ß testers participated in this process. Content was curated primarily to provide users with factual answers to common questions about COVID-19. To ensure relevance of the content, topics were driven by community concerns and questions, as ascertained through research. Ana's repository of educational content was based on national and international organizations as well as interdisciplinary experts. In the context of this development and pilot project, we identified an evaluation framework to explore reach, engagement, and satisfaction. RESULTS: A total of 626 community members used Ana from August 2021 to March 2022. Among those participants, 346 used the English version, with an average of 43 users per month; and 280 participants used the Spanish version, with an average of 40 users monthly. Across all users, 63.87% (n=221) of English users and 22.14% (n=62) of Spanish users returned to use Ana at least once; 18.49% (n=64) among the English version users and 18.57% (n=52) among the Spanish version users reported their ranking. Positive ranking comprised the "smiley" and "loved" emojis, and negative ranking comprised the "neutral," "sad," and "mad" emojis. When comparing negative and positive experiences, the latter was higher across Ana's platforms (English: n=41, 64.06%; Spanish: n=41, 77.35%) versus the former (English: n=23, 35.93%; Spanish: n=12, 22.64%). CONCLUSIONS: This pilot project demonstrated the feasibility and capacity of an innovative ICT to share COVID-19 information within diverse communities. Creating a chatbot like Ana with bilingual content contributed to an equitable approach to address the lack of accessible COVID-19-related information.

Coping Factors for Caregivers of Children With Medical Complexity During Hospitalization.

OBJECTIVES: This study aimed to identify coping factors for caregivers of children with medical complexity (CMC) to manage the stressors and experience associated with their child's hospitalization. METHODS: We conducted semistructured interviews with CMC caregivers over a video-conferencing platform to examine factors that they perceive impact their coping while their children are hospitalized. Interviews were audio-recorded, transcribed, and imported into a qualitative coding software (MAXQDA). Using a modified grounded theory approach, we assigned process and in vivo codes to the transcripts and conducted interpretive analysis to identify themes. Once we reached thematic saturation, we finalized themes by discussing them to achieve group consensus and processed themes through triangulation with our institution's pediatric family advisory council. RESULTS: We interviewed 14 caregivers (11 mothers and 3 fathers) and identified 3 major themes. The factors that contributed to CMC caregiver coping with their child's hospitalizations included caregivers: feeling that they are prioritizing their child's needs over their own, feeling trust in their child's interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting. CONCLUSIONS: Our study found 3 coping factors for caregivers of CMC during their child's hospitalization. Development and testing of interventions that enhance these coping practices may better support CMC caregivers during their child's hospitalizations. Potential interventions could include developing structured processes to establish caregiver involvement in their child's hospital care and helping caregivers modify their existing coping mechanisms to the hospital setting.

COVID-19 Vaccines for Children with Developmental Disabilities: Survey of New York State Parents' Willingness and Concerns.

OBJECTIVE: While 1 in 6 US children have a developmental disability (DD), and such children are disproportionately affected by COVID-19, little is known about their vaccination status. We surveyed New York State parents of children with DDs to ascertain willingness and concerns regarding COVID-19 vaccines. METHODS: An online survey was distributed to statewide DD networks from June to September 2021 (vaccines were authorized for adolescents in May 2021). We report associations between vaccine willingness and concerns and race/ethnicity, child age, in-person schooling, routine/flu vaccinations, and DD diagnoses. Willingness was categorized as "got/will get ASAP" (high), "wait and see/only if required," or "definitely not." RESULTS: A total of 352 parents (49.1% White) responded. Willingness differed by age ( p < 0.001). High willingness was reported for 73.9%, 50.0%, and 36.0% of children aged 12 to 17, 6 to 11, and 0 to 5 years, respectively. Willingness differed by autism diagnosis ( p < 0.01) and routine and flu vaccination status ( p < 0.001). Predominant concerns included side effects (89%) and children with disabilities not being in trials (80%). Less common concerns were COVID not serious enough in children to warrant vaccine (23%) and misinformation (e.g., microchips, 5G, DNA changes) (24%). Concerns about vaccine safety differed by age ( p < 0.01) and were highest for older and then the youngest children. In age-stratified adjusted models, attention-deficit/hyperactivity disorder was negatively associated with high willingness for age 5 or younger (OR = 0.02, 95% confidence interval, <0.001-0.622). CONCLUSION: Parents of children with DD in New York seemed highly willing for them to receive COVID-19 vaccines. Although few factors predicted willingness to vaccinate, addressing safety and developmental concerns regarding young children is warranted. Given their increased vulnerability, improved COVID-19 surveillance for children with DD is warranted.

COVID-19 vaccine perceptions in New York State's intellectual and developmental disabilities community.

BACKGROUND: People with intellectual and developmental disabilities (IDD) are at disproportionate risk for severe COVID-19 outcomes, particularly those living in congregate care settings. Yet, there is limited data on vaccine perceptions in the disability community. OBJECTIVE: To explore COVID-19 vaccine perceptions in individuals with IDD, their family members, and those who work with them, to inform a statewide vaccine information and messaging project. METHODS: A national survey, adapted in five languages for the IDD community, was distributed to a convenience sample of IDD organizations throughout New York State. Constructs included vaccine intention, reasons for vaccine hesitancy, and trusted sources of vaccine information. Zip code data were used to map respondent location and vaccine preferences. RESULTS: Of n = 825 respondents, approximately 75% intended to or had received the vaccine across roles (i.e., people with developmental disabilities, family members, direct care workers) and racial/ethnic groups. Greater vaccine hesitancy was reported in younger individuals and those making decisions on behalf of a person with IDD. Concerns included side effects and the swiftness of vaccine development. Black and Hispanic participants had heightened concerns about being an "experiment" for the vaccine. Trusted sources of information included healthcare providers and family members. Respondents who intended to/received the vaccine were dispersed throughout the state. CONCLUSIONS: Vaccine preferences in this New York State disability community sample align with national data. Identified concerns suggest the need for community education that addresses misperceptions. Age and race differences in perspectives highlight the need for tailored education, delivered by trusted messengers.

Thinking Small to Think Big: Modular Approach for Autism Programming in Schools (MAAPS).

To date there are no evidence-based comprehensive interventions for use in school settings. There are numerous barriers to delivery of high-quality interventions in schools that have limited the transfer of research-based interventions to school settings. Modular Approach to Autism Programing for Schools (MAAPS) is a framework for implementation of evidence-based interventions in school settings that is designed to address these barriers. The development and initial evaluation of MAAPS was conducted using an implementation-science framework and results indicate that MAAPS is aligned with needs and resources available in schools, that it had excellent social validity, and that there is good evidence that MAAPS is effective for addressing core and associated features of autism in educational settings.

Disparities in Service Use Among Children With Autism: A Systematic Review.

CONTEXT: Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services. OBJECTIVE: We reviewed evidence related to disparities in service use, intervention effectiveness, and quality of care provided to children with autism by race, ethnicity, and/or socioeconomic status. DATA SOURCES: Medline, PsychInfo, Educational Resources Informational Clearinghouse, and the Cumulative Index to Nursing and Allied Health Literature were searched by using a combination of Medical Subject Headings terms and keywords related to autism, disparities, treatment, and services. STUDY SELECTION: Included studies addressed at least one key question and met eligibility criteria. DATA EXTRACTION: Two authors reviewed the titles and abstracts of articles and reviewed the full text of potentially relevant articles. Authors extracted information from articles that were deemed appropriate. RESULTS: Treatment disparities exist for access to care, referral frequency, number of service hours, and proportion of unmet service needs. Evidence revealed that racial and ethnic minority groups and children from low-income families have less access to acute care, specialized services, educational services, and community services compared with higher-income and white families. We found no studies in which differences in intervention effectiveness were examined. Several studies revealed disparities such that African American and Hispanic families and those from low-income households reported lower quality of care. LIMITATIONS: The body of literature on this topic is small; hence it served as a limitation to this review. CONCLUSIONS: The documented disparities in access and quality of care may further identify groups in need of outreach, care coordination, and/or other interventions.

Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable.

INTRODUCTION: Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. METHODS: MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various "modules," which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). RESULTS: We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. CONCLUSION: Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD. TRIAL REGISTRATION: This study is registered with ClinicalTrials.gov: NCT03711799.

Understanding stress in parents of children with autism spectrum disorder: A focus on under-represented families.

OBJECTIVES: Parents of children with autism spectrum disorder (ASD) report high levels of stress that can interfere with important child and family treatments. Limited past research considers how the caregiving experience and social determinants of health may contribute to treatment engagement and outcomes, particularly in under-represented families, who already experience service and health disparities. We aimed to assess the experiences of caring for an individual with ASD, with specific emphasis on perceptions of stress. METHODS: Three key informant interviews were conducted with parents (n=1) and providers (n=2) of children with ASD to refine interview guide questions. Once questions were refined, four focus groups (n=17) and one key informant interview were conducted with parents of children with ASD who were (a) non-white, (b) Spanish speakers, (c) of limited financial resources, and/or (d) living in rural counties. All participants lived in Western New York, with the majority residing in Rochester. Content analysis by two independent coders was used to identify and refine themes. RESULTS: Themes included: (a) caregiving for an individual with ASD can cause interference with family functioning, (b) misperceptions of ASD contribute to caregiver stress, (c) culture contributes to stressors for parents, and (d) service navigation difficulties are a significant source of stress. Suggestions for interventions to address parents stress included: modular and integrative treatments for multiple content areas, addressing cultural barriers to treatment engagement, and education on ASD to the community. CONCLUSIONS: Parent-focused interventions for caregivers of children with ASD should specifically explore and address service and health disparities for parents, especially those predicated on race, ethnicity, rurality, and language of origin. Interventions should also be individualized to parent characteristics and experiences. In future research on parent training, the unique contributions of caregiver stress and other characteristics (e.g., race-related stress, geographic location) should be included as potential modifiers of treatment.

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.

Correction to: Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Please note that the middle name of coauthor Francisco Reinosa Segovia was misspelled (as "Rienosa") is this article as originally published.

Teaching Parents Behavioral Strategies for Autism Spectrum Disorder (ASD): Effects on Stress, Strain, and Competence.

We report on parent outcomes from a randomized clinical trial of parent training (PT) versus psychoeducation (PEP) in 180 children with autism spectrum disorder (ASD) and disruptive behavior. We compare the impact of PT and PEP on parent outcomes: Parenting Stress Index (PSI), Parent Sense of Competence (PSOC), and Caregiver Strain Questionnaire (CGSQ). Mixed-effects linear models evaluated differences at weeks 12 and 24, controlling for baseline scores. Parents in PT reported greater improvement than PEP on the PSOC (ES = 0.34), CGSQ (ES = 0.50), and difficult child subdomain of the PSI (ES = 0.44). This is the largest trial assessing PT in ASD on parent outcomes. PT reduces disruptive behavior in children, and improves parental competence while reducing parental stress and parental strain.

Implementing a Manualized, Classroom Transition Intervention for Students With ASD in Underresourced Schools.

Children with autism spectrum disorder (ASD) in public education settings experience difficulties with transitions during classroom routines, which can result in challenging behavior. Single-subject research supports techniques for transitions, but school-based approaches often require resources and training unavailable in low-resource districts, limiting implementation. We developed and evaluated the Schedules, Tools, and Activities for Transitions (STAT) program, a short-term, manualized intervention of behavioral supports to support daily routine transitions for students with ASD (K-5) in underresourced districts. We utilized a multisite, cluster-randomized, group comparison design (immediate treatment versus waitlist) with matched pairs ( n = 150 students, 57 educators). Data indicated (a) no group differences for academic engagement or classroom independence, and (b) an advantage for STAT in reducing challenging behavior and increasing teacher fidelity. Results show preliminary support for an intervention that is feasible and perceived as sustainable in real-world settings.

Community-Partnered Research With Urban School Districts That Serve Children With Autism Spectrum Disorder.

OBJECTIVE: To illustrate the process of community-partnered participatory research to develop and evaluate interventions for children with autism in urban school districts. METHODS: We formed partnerships of school personnel, parents, and researchers to guide the project. We then conducted focus groups, key informant interviews, and town halls to explore how public schools currently serve students with autism. We used findings from these activities to adapt interventions for public schools. We then tested interventions in randomized clinical trials (RCTs). RESULTS: Community input indicated a particular need for interventions to improve children's social interaction and instructional supports to promote their success throughout the day. On the basis of this input, we adapted 2 interventions: Remaking Recess for improving peer engagement during social times; and Schedules, Tools, and Activities for Transition (STAT) for facilitating successful transitions between activities throughout the daily routine. Results of the RCT of Remaking Recess are not yet available. The RCT of STAT involved 150 children and 56 teachers. Teachers reported high buy-in and increased their proficiency at implementing STAT; children with ASD reduced their disruptive behavior and made progress toward teacher-nominated goals. However, teachers' implementation remained inconsistent, and children did not reliably improve in academic engagement or independence. CONCLUSIONS: The findings suggest that although community-partnered participatory research has limitations, it can assist in selecting interventions to address community priorities and produce some favorable outcomes for children with autism in public schools. An important next step is to evaluate the sustainability of the interventions introduced in this project.

Services for children with autism spectrum disorder in three, large urban school districts: Perspectives of parents and educators.

This study used qualitative methods to evaluate the perceptions of parents, educators, and school administrators in three large, urban school districts (Los Angeles, Philadelphia, and Rochester) regarding services for children with autism spectrum disorder within the context of limited district resources. Facilitators followed a standard discussion guide that contained open-ended questions regarding participants' views on strengths and limitations of existing services and contextual factors that would facilitate or inhibit the process of introducing new interventions. Three primary themes were identified: (1) tension between participant groups (teachers and paraprofessionals, staff and administration, teachers and parents, special education and general education teachers), (2) necessity of autism spectrum disorder-specific and behavioral training for school personnel, and (3) desire for a school culture of accepting difference. These themes highlight the importance of developing trainings that are feasible to deliver on a large scale, that focus on practical interventions, and that enhance communication and relationships of school personnel with one another and with families.