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Addressing the Needs of Under-Resourced Families of Children with Autism

The Autism Intervention Network on Behavioral Health (AIR-B) is a network of researchers whose goal is to improve access to evidenced-based treatments for children with autism spectrum disorder (ASD) in under-resourced communities. The AIR-B network consists of two related studies: Mind the Gap (MTG) and Building Better Bridges (BBB). MTG is an intervention designed to engage caregivers of newly diagnosed children with ASD. Many under-resourced and ethnic minority families are lost to the service system during the time between obtaining an evaluation for an ASD diagnosis and receiving ASD-specific services. MTG aims to engage families of children with ASD earlier and improve their access to ASD-related services. BBB is designed to improve the transition process for children with ASD and their families as they transition between schools and service systems. Many families of children with ASD struggle with school transition; these struggles often are exacerbated in under-resourced communities that have limited school funding. Currently, no tested, US-based intervention programs are designed to improve the school transition process for children and adolescents with ASD; therefore, BBB is designed to facilitate a bridge between schools and families.

Many interventions developed through university-based research programs are not sustained when implemented in community settings, especially in under-resourced communities (Dingfelder & Mandell, 2011; Eiraldi, Wolk, Locke, & Beidas, 2015; Glasgow, Vogt, & Boles, 1999). The research-to-practice gaps are much too long for these interventions, averaging at 17 years (Balas & Boren, 2000; Grant, Green & Mason, 2003). In order to improve the feasibility and sustainability of the interventions developed by AIR-B projects and to hasten the community implementation of the interventions (e.g. Aarons, Hurlburt, & Horwitz, 2011; Brookman-Frazee et al., 2016; Mendel, Meredith, Schoenbaum, Sherbourne, & Wells, 2008), the network is using community-partnered participatory research (CPPR) methods. CPPR emphasizes an equal partnership between community stakeholders (e.g. family members, clinicians and teachers) and academic partners to develop and implement research-informed community programs (Jones & Wells, 2007).

Through the use of CPPR, members of the AIR-B network work with community stakeholders to develop interventions for under-resourced families of children with ASD in Pennsylvania, California and New York. The AIR-B network fosters many community partnerships with families, early intervention agencies, public school districts, support groups for families of children with ASD, and disabilities rights organizations. These partnerships provide both a platform for essential community input in intervention development, and a gateway to increase research team involvement in ASD-related community events.

Community Input on Intervention Development

Before creating the interventions, the research team used focus groups and interviews with under-resourced families of children with ASD and service providers to obtain community input. The research team met with 105 parents/caregivers and 125 providers across sites to discuss barriers and facilitators to accessing ASD-specific services and improving school transitions for children with ASD. The result extracted from these interactions informed the development of useful, feasible and sustainable interventions.

The research team also established advisory boards composed of community stakeholders at each site to provide continuous feedback regarding the fit and feasibility of the two interventions. These relationships resulted in important changes to the interventions. For example, parent education module topics for MTG were suggested by partners from a local early intervention agency. Similarly, for the BBB intervention, public school district administration teams were actively involved in providing knowledge of transition-related tasks and important transition dates for a checklist to be used in the intervention. The community advisory boards continue to meet monthly and are vital to the development of interventions that will sustain beyond the research timeline.

Academic Involvement in the Community

Research team members and community partners host an annual community conference for caregivers of children with autism. The conference is designed by location, content and advertising to engage urban families who may otherwise be unable to attend such events. The conference is free, includes free child-care, travel reimbursement and access to community resources. Local vendors and volunteers attend, and caregivers are invited to meet other families and participate in workshops. This conference is one example of the research network’s attempts to engage community stakeholders in activities aimed at improving access to high quality services for individuals with ASD. Research team members also attend many local community support groups and trainings related to developmental disabilities in order to bridge the gap between academic researchers and community members and increase community involvement with the research network.

Implications and Recommendations

The use of CPPR and community-academic partnerships has facilitated the development of community-informed interventions with improved fit with the communities in which they will be implemented. The research team will maintain current partnerships and form new ones. Soon, pilot studies of the MTG and BBB interventions will begin to gather preliminary information regarding the feasibility of the interventions before implementing them on a larger scale. Throughout the pilot studies, community stakeholders will play a key role in developing and refining the interventions.

Researchers interested in utilizing CPPR methods in their work should consider using the following strategies: participating in local events and support networks; soliciting continuous feedback from community partners about intervention development and organizational fit; recruiting in frequently visited and accessible neighborhood locations (e.g. corner stores, schools, laundromats); providing compensation and travel reimbursement for community partners and research participants; and sharing resources about local supports with community partners and families.

CPPR offers a useful and under-used approach to bridging the research-to-practice gap in order to address the needs of vulnerable populations in educational and behavioral health systems. Researchers interested in implementing sustainable interventions within under-resourced settings should consider adopting CPPR methods to improve the effectiveness of those interventions and broaden the research knowledge regarding this methodology.

Correspondence should be addressed to: Briana Bronstein, MAEd, Center for Mental Health Policy & Services Research, University of Pennsylvania, Perelman School of Medicine, 3535 Market Street, 3rd Floor, Philadelphia, PA, 19104. brianabr@upenn.edu ; http://www.cmhpsr.org/ ; http://airbnetwork.org/.

References

Aarons, G. A., Hurlburt, M., & Horwitz, S. M. (2011). Advancing a conceptual model of evidence-based practice implementation in public service sectors. Administration and Policy in Mental Health and Mental Health Services Research, 38(1), 4–23. https://doi.org/10.1007/s10488-010-0327-7

Balas, E. A. & Boren, S. A. Managing clinical knowledge for health care improvement. Yearb. Med. Inform. 2000, 65–70 (2000).

Brookman-Frazee, L., Stahmer, A., Stadnick, N., Chlebowski, C., Herschell, A., & Garland, A.F. (2016). Characterizing the use of research-community partnerships in studies of evidence-based interventions in children’s community services. Administration and Policy in Mental Health, 43(1), 93–104. https://doi.org/10.1007/s10488-014-0622-9

Dingfelder, H. E., & Mandell, D. S. (2011). Bridging the Research-to-Practice Gap in Autism Intervention: An Application of Diffusion of Innovation Theory. Journal of Autism and Developmental Disorders, 41(5), 597–609. https://doi.org/10.1007/s10803-010-1081-0

Eiraldi, R., Wolk, C. B., Locke, J., & Beidas, R. (2015). Clearing hurdles: The challenges of implementation of mental health evidence-based practices in under-resourced schools. Advances in School Mental Health Promotion, 8(3), 124–140. https://doi.org/http://dx.doi.org/10.1080/1754730X.2015.1037848

Glasgow, R. E., Vogt, T. M., & Boles, S. M. (1999). Evaluating the public health impact of health promotion interventions: the RE-AIM framework. American Journal of Public Health, 89(9), 1322–1327. https://doi.org/10.2105/AJPH.89.9.1322

Grant, J., Green, L. & Mason, B. Basic research and health: a reassessment of the scientific basis for the support of biomedical science. Res. Eval. 12, 217–224 (2003).

Jones, L., & Wells, K. (2007). Strategies for academic and clinician engagement in community-participatory partnered research. Jama, 297(4), 407-410.

Mendel, P., Meredith, L. S., Schoenbaum, M., Sherbourne, C. D., & Wells, K. B. (2008). Interventions in organizational and community Context: A framework for building evidence on dissemination and implementation in health services research. Administration and Policy in Mental Health and Mental Health Services Research, 35(1–2), 21–37. https://doi.org/10.1007/s10488-007-0144-9

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