Community-Academic Partnerships: A Systematic Review of the State of the Literature and Recommendations for Future Research.

POLICY POINTS: Communities, funding agencies, and institutions are increasingly involving community stakeholders as partners in research, to provide firsthand knowledge and insight. Based on our systematic review of major literature databases, we recommend using a single term, community-academic partnership (CAP), and a conceptual definition to unite multiple research disciplines and strengthen the field. Interpersonal and operational factors that facilitate or hinder the collaborative process have been consistently identified, including "trust among partners" and "respect among partners" (facilitating interpersonal factors) and "excessive time commitment" (hindering operational factor). Once CAP processes and characteristics are better understood, the effectiveness of collaborative partner involvement can be tested. CONTEXT: Communities, funding agencies, and institutions are increasingly involving community stakeholders as partners in research. Community stakeholders can provide firsthand knowledge and insight, thereby increasing research relevance and feasibility. Despite the greater emphasis and use of community-academic partnerships (CAP) across multiple disciplines, definitions of partnerships and methodologies vary greatly, and no systematic reviews consolidating this literature have been published. The purpose of this article, then, is to facilitate the continued growth of this field by examining the characteristics of CAPs and the current state of the science, identifying the facilitating and hindering influences on the collaborative process, and developing a common term and conceptual definition for use across disciplines. METHODS: Our systematic search of 6 major literature databases generated 1,332 unique articles, 50 of which met our criteria for inclusion and provided data on 54 unique CAPs. We then analyzed studies to describe CAP characteristics and to identify the terms and methods used, as well as the common influences on the CAP process and distal outcomes. FINDINGS: CAP research spans disciplines, involves a variety of community stakeholders, and focuses on a large range of study topics. CAP research articles, however, rarely report characteristics such as membership numbers or duration. Most studies involved case studies using qualitative methods to collect data on the collaborative process. Although various terms were used to describe collaborative partnerships, few studies provided conceptual definitions. Twenty-three facilitating and hindering factors influencing the CAP collaboration process emerged from the literature. Outcomes from the CAPs most often included developing or refining tangible products. CONCLUSIONS: Based on our systematic review, we recommend using a single term, community-academic partnership, as well as a conceptual definition to unite multiple research disciplines. In addition, CAP characteristics and methods should be reported more systematically to advance the field (eg, to develop CAP evaluation tools). We have identified the most common influences that facilitate and hinder CAPs, which in turn should guide their development and sustainment.

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.

A Waitlist Randomized Implementation Trial of Classroom Pivotal Response Teaching for Students With Autism.

Classroom Pivotal Response Teaching (CPRT) is a community-partnered adaptation of a naturalistic developmental behavioral intervention identified as an evidence-based practice for autistic children. The current study evaluated student outcomes in a randomized, wait-list controlled implementation trial across classrooms. Participants included teachers (n = 126) and students with autism (n = 308). Teachers participated in 12 hours of didactic, interactive training and additional in-classroom coaching. Generalized Estimating Equations accounted for clustering. Adjusted models evaluated the relative effects of training group, CPRT fidelity, and classroom quality on student outcomes. Results indicate higher CPRT fidelity was associated with greater increases in student learning. Having received CPRT training predicted increased student engagement and greater decreases in reported approach/withdrawal problems. These differences may be linked to the theoretical foundations of CPRT of increasing student motivation and engagement and collaborative adaptation to increase feasibility in schools. Overall, results suggest CPRT may be a beneficial approach for supporting autistic students.

Mechanisms of implementation: An appraisal of causal pathways presented at the 5th biennial Society for Implementation Research Collaboration (SIRC) conference.

Background Implementation mechanisms are defined as processes or events through which implementation strategies operate to affect one or more implementation outcomes. Understanding the mechanisms through which implementation strategies work is critical to understanding how and why implementation efforts are successful, and to matching, tailoring, and optimizing implementation strategies. This study examined the content of abstracts included in the program for the 2019 Society for Implementation Research Collaboration (SIRC) conference to characterize the presence of data related to implementation strategy mechanisms and their larger causal pathways. Methods Trained coders reviewed all 205 accepted abstracts and extracted information regarding discrete implementation strategies, determinants of implementation, implementation mechanisms, service outcomes, and implementation outcomes. Theoretical articles were omitted from further analyses due to their inability to offer data related to implementation mechanisms. Results Of the 151 empirical studies included, only 11 (7.28%) reported studying mechanisms. Mechanisms were examined in projects utilizing 14 different implementation strategies. We were able to construct implementation causal pathways for just two implementation strategies, "assess for readiness and identify determinants," representing information pulled from four different abstracts, and "create a learning collaborative," with data pulled from just one abstract. Conclusions These findings indicate that, at least based on SIRC conference abstracts, the empirical investigation of implementation mechanisms remains understudied, highlighting the need for focused research on the study of mechanisms. Plain Language Summary Understanding the mechanisms through which implementation strategies work is critical to understanding how and why implementation efforts are successful. The study of implementation mechanisms may be used to optimize implementation strategy decisions. Investigations to date have not established causal pathways linking implementation strategies, mechanisms, barriers, and outcomes. This study examined abstracts included in the program for the 2019 Society for Implementation Research Collaboration (SIRC) conference. Trained coders reviewed all 205 accepted abstracts and extracted information to characterize the presence of data related to implementation strategy causal pathways. A minority of abstracts reported studying mechanisms. We were able to construct implementation causal pathways for just two implementation strategies, representing information pulled from five different abstracts all together. This highlights the need for focused research on the study of mechanisms.

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.

Advancing mechanisms of implementation to accelerate sustainable evidence-based practice integration: protocol for generating a research agenda.

INTRODUCTION: Mechanisms explain how implementation strategies work. Implementation research requires careful operationalisation and empirical study of the causal pathway(s) by which strategies effect change, and factors that may amplify or weaken their effects. Understanding mechanisms is critically important to replicate findings, learn from negative studies or adapt an implementation strategy developed in one setting to another. Without understanding implementation mechanisms, it is difficult to design strategies to produce expected effects across contexts, which may have disproportionate effects on settings in which priority populations receive care. This manuscript outlines the protocol for an Agency for Healthcare Research and Quality-funded initiative to: (1) establish priorities for an agenda to guide research on implementation mechanisms in health and public health, and (2) disseminate the agenda to research, policy and practice audiences. METHODS AND ANALYSIS: A network of scientific experts will convene in 'Deep Dive' meetings across 3 years. A research agenda will be generated through analysis and synthesis of information from six sources: (1) systematic reviews, (2) network members' approaches to studying mechanisms, (3) new proposals presented in implementation proposal feedback sessions, (4) working group sessions conducted in a leading implementation research training institute, (5) breakout sessions at the Society for Implementation Research Collaboration's (SIRC) 2019 conference and (6) SIRC conference abstracts. Two members will extract mechanism-relevant text segments from each data source and a third member will generate statements as an input for concept mapping. Concept mapping will generate unique clusters of challenges, and the network will engage in a nominal group process to identify priorities for the research agenda. ETHICS AND DISSEMINATION: This initiative will yield an actionable research agenda to guide research to identify and test mechanisms of change for implementation strategies. The agenda will be disseminated via multiple channels to solicit feedback and promote rigorous research on implementation mechanisms.

The Effects of the Early Start Denver Model for Children with Autism Spectrum Disorder: A Meta-Analysis.

This meta-analysis examined the effects of the Early Start Denver Model (ESDM) for young children with autism on developmental outcome measures. The 12 included studies reported results from 640 children with autism across 44 unique effect sizes. The aggregated effect size, calculated using a robust variance estimation meta-analysis, was 0.357 (p = 0.024), which is a moderate effect size with a statistically significant overall weighted averaged that favored participants who received the ESDM compared to children in control groups, with moderate heterogeneity across studies. This result was largely driven by improvements in cognition (g = 0.412) and language (g = 0.408). There were no significant effects observed for measures of autism symptomology, adaptive behavior, social communication, or restrictive and repetitive behaviors.

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.

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.