Feasibility and acceptability of CRiSOL: A pilot peer-based intervention to address syndemic health issues afflicting Latino immigrants in the U.S.

Substance use, HIV/AIDS, domestic violence and mental health (SAVAME) are syndemic health issues that disproportionately burden Latinos in the U.S. Yet, there are limited evidence-based interventions to address these interrelated syndemic issues and their shared socio-ecological determinants. This study sought to test the feasibility and acceptability of CRiSOL, a peer-based, resilience-focused intervention to reduce the impact of the SAVAME syndemic on Latino immigrants. Fifteen Latino immigrant community leaders were recruited and trained to serve as health promotion agents in their naturally existing social networks. The training was implemented with high fidelity, received with high satisfaction by the peer leaders, and associated with significant improvements in their knowledge, leadership skills, and social capital. During an 8-month outreach phase, nine leaders remained active in the program and documented 825 one-on-one interactions with community members, during which they provided advice/counseling (52.2% of interactions), health information/education (32.5%), referrals to health and social services (38.5%), food aid (39.9%), and service navigation/assistance (10.2%). While future research must be conducted to establish the effectiveness of CRiSOL, findings from this pilot evaluation indicate the feasibility, acceptability, and high level of reach of this intervention and suggest significant potential to reduce the SAVAME syndemic burden in Latino communities.

Provider perceptions of availability, accessibility, and adequacy of health and behavioral services for Latino immigrants in Philadelphia: a qualitative study.

OBJECTIVE: Latino populations in the United States are disproportionately affected by substance use, HIV/AIDS, violence, and mental health issues (SAVAME). A growing body of evidence demonstrates the syndemic nature of SAVAME and the need for integrated strategies to reduce their impact. This study sought to understand the network of SAVAME services for Latino immigrants in Philadelphia to inform future interventions for SAVAME prevention and mitigation. METHODOLOGY: Key informant interviews (N = 30) were conducted with providers working in Latino-serving organizations providing SAVAME services. Interviews were analyzed using thematic coding and grounded theory. RESULTS: Latino-serving providers perceived a large need for, and important limitations in the availability, accessibility, and adequacy of SAVAME services for Latino immigrants. Gaps were seen as especially acute for mental health and substance use services, partly because of insufficient funding for these services. Latino immigrants' lack of health insurance, immigration status, limited English proficiency (LEP), stigma surrounding SAVAME issues, and limited knowledge of available services were identified as significant barriers preventing access to services. Providers noted that scarcity of well-trained, culturally competent, and ethnically concordant providers reduced the adequacy of SAVAME services for Latino immigrant clients. The small size, low levels of infrastructure, and limited capacity were reported as additional factors limiting the ability of many Latino-serving organizations to adopt a syndemic approach in the prevention and treatment of SAVAME services. CONCLUSIONS: The results call for changes in the structure of funding streams and communitywide strategies to foster collaboration across SAVAME providers working with Latino immigrant clients.

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).

Disrupted Care Continuity: Testing Associations between Social Networks and Transition Success for Children with Autism.

Children with autism situated in lower income families often receive intensive educational interventions as their primary form of treatment, due to financial barriers for community interventions. However, the continuity of care can be disrupted by school transitions. The quality of social relationships during the transition to a new school among parents, school staff and community providers, called the team-around-the-child (TAC), can potentially buffer a child with autism from the adverse effects caused by care disruptions. Qualities of social relationships, including trust and collaborative problem solving, can be measured using social network analysis. This study investigates if two different types of TAC relationships, defined as (1) the level of trust among team members and (2) the degree of collaborative problem solving among team members, are associated with perceived successful transitions for children with autism from lower income families. Findings suggested that TAC trust is significantly associated with the outcome of transition success for children with autism immediately post-transition.

Benefits and Risks: A Systematic Review of Information and Communication Technology Use by Autistic People.

Background: Communication via the internet is a regular feature of everyday interactions for most people, including autistic people. Researchers have investigated how autistic people use information and communication technology (ICT) since the early 2000s. However, no systematic review has been conducted to summarize findings. Objective: This study aims to review existing evidence presented by studies about how autistic people use ICT to communicate and provide a framework for understanding contributions, gaps, and opportunities for this literature. Methods: Guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses(PRISMA) statement, we conducted a comprehensive review across five databases, searching for studies investigating how autistic youth and adults use ICT to communicate. Authors reviewed the articles for inclusion and assessed methodological quality. Results: Thirty-two studies met the eligibility criteria, including 19 quantitative studies, 12 qualitative studies, and 1 mixed methods study, with data from 3026 autistic youth (n = 9 studies) and adults (n = 23 studies). Ratings suggest that the evidence base is emergent. Underrepresented groups in the sample included autistic women, transgendered autistic people, non-White autistic people, low income autistic people, and minimally speaking and/or autistic adults with co-occurring intellectual disability. Three main themes emerged, including variation in ICT communication use among autistic youth and adults, benefits and drawbacks experienced during ICT communication use, and the engagement of autistic youth and adults in the online autism community. Conclusions: Further exploration of the positive social capital that autistic people gain participating in online autism communities would allow for the development of strengths-based interventions. Additional research on how autistic people navigate sexuality and ICTs is needed to identify mechanisms for reducing vulnerability online. Additional scholarship about underrepresented groups is needed to investigate and confirm findings regarding ICT communication use for gender, racial, and socioeconomic minority groups. Lay summary: What was the purpose of this study?: People use the internet to communicate (talk and connect) with one another. Some research has found that autistic people may prefer to communicate using the internet instead of in person. Over the past 20 years, there has been research about how autistic people use the internet. To understand what research has discovered so far, we collected published research about how autistic youth and adults use the internet to communicate.What did the researchers do?: We used scientific best practices as described in the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines to collect research about how autistic people us the internet to communicate. We included research that uses words (qualitative research) and numbers (quantitative research). First, we searched several places that list research studies to find research on autistic people and the internet. Then, we removed research that did not fit what we were looking for (our criteria). Finally, we then read the full articles, collected their most important findings, and looked for patterns.What do these findings add to what is already known?: Thirty-two studies met our criteria, including 19 studies that used closed-ended survey questions that tested relationships between variables, 12 studies that used open-ended interviews and looked for patterns and connections among participants, and 1 mixed methods study. In total, 3026 autistic youth of ages 10-17 years (number of participants = 9 studies) and adults (number of participants = 23 studies) participated in these 32 studies. We rated each of the 32 studies for quality and learned that the evidence base is preliminary, meaning that more rigorous high-quality studies are needed before we can be confident in the findings. We found three main themes: (1) differences in the ways that autistic youth and adults used the internet to communicate, (2) benefits and drawbacks experienced when using the internet to communicate, and (3) the engagement of autistic youth and adults in the online autism community. Some of the benefits of social media for autistic people include more control over how they talk and engage with others online and a greater sense of calm during interactions. However, findings suggest some drawbacks for autistic people, including continued feelings of loneliness and the desire for in-person friendships. Social media provides opportunities for autistic people to find others on the autism spectrum and form a stronger identity as part of the autism community. The study also showed that there is little research about autistic women, autistic transgender people, autistic racial/ethnic minorities, or autistic people from lower socioeconomic status (SES) groups.What are potential weaknesses of this study?: We only included research in scientific articles, and there may be useful information on this topic in books, student research, or online.How will these findings help young adults on the autism spectrum now or in the future?: This study can help identify gaps and opportunities for new research, support the importance of online autistic communities, and suggest possible training opportunities about how to support autistic people when they use the internet for communication.

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.

Services for Adults With Autism Spectrum Disorder: a Systems Perspective.

PURPOSE OF REVIEW: We review original research about services for adults on the autism spectrum published from January 2013 through December 2018. The main aim is to characterize the topical and methodological aspects of research about services. We review research on services related to employment, living in the community, and social participation. We compare our results with those from a similar review published in 2012 to assess progress and identify where new directions in research about services for adults with autism are needed. RECENT FINDINGS: We found the evidence base about services for adults on the autism spectrum remains very small and highly variable in aims and methods. There is wide variability in methods used to define sampling frames and recruit participants. Most studies focus on employment. Almost no studies examine the overall ecosystem of services serving autistic adults. Few studies use a conceptual framework for understanding access to, or improvement of, services. The small size of the extant research coupled with inconsistent quality prevents the accumulation of new knowledge in ways that would significantly inform the improvement of systems of care for the growing population of adults on the autism spectrum.

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.

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: Exploring multi-level system factors facilitating educator training and implementation of evidence-based practices (EBP): a study protocol.

After publication of the original article [1] it was brought to our attention that author Elizabeth McGhee Hassrick was erroneously included as Elizabeth McGee Hassrick. The correct spelling of the author's name is included in the author list of this erratum.