Caregiver Perspectives Shape Design of Federally Funded COACH Trial for Autism Coaching at Home
核心洞察
Center for Social Dynamics (搜索) highlights two new papers co-authored by Dr. Joy Pollard examining how caregiver perspectives inform behavioral health services and clinical research for autistic children and adolescents with severe challenging behavior.
A caregiver priorities study, supported by a PCORI Eugene Washington Engagement Award, used a sequential mixed-methods design combining interviews with a national survey of families receiving ABA services.
Caregivers reported substantial barriers to care, including diagnostic delays, difficulty finding experienced providers, and treatment demands on work and family life, with rural families facing significantly greater barriers.
Center for Social Dynamics (搜索) (CSD) is highlighting the publication of two new research papers co-authored by its Head of Clinical Research & Innovation, Dr. Joy Pollard, that examine how caregiver perspectives can inform the development of behavioral health services and clinical research for neurodiverse children and adolescents with severe challenging behavior. The research originated through Behavior Change Institute (搜索) (BCI) prior to its merger with Center for Social Dynamics and emerged from a decade-long scientific collaboration between Dr. Joy Pollard and Dr. Scott Hall, Professor in the Department of Psychiatry and Behavioral Sciences at the Stanford School of Medicine (搜索).
The publications include a study examining caregiver priorities related to behavioral health service delivery and a published protocol for the COACH clinical trial (Caregiver Outreach for Autism Coaching at Home), a federally funded randomized clinical trial evaluating caregiver coaching delivered through telehealth and in-person models. Supported through a Patient-Centered Outcomes Research Institute (搜索) (PCORI) Eugene Washington PCORI Engagement Award, the caregiver priorities study focused on incorporating community perspectives into autism research and service delivery. Together, the papers illustrate how community-engaged research can move caregiver perspectives from conversation into clinical trial design.
Dr. Joy Pollard shared that "Community-engaged research is about ensuring that the questions we study, and ultimately the services we develop, reflect the priorities identified by families and clinicians. When communities help shape research from the beginning, the findings are more likely to be meaningful, practical, and relevant to the families and communities they are intended to serve."
Study Design and Methodology
The caregiver priorities study used a sequential mixed-methods design, combining in-depth caregiver interviews with a national survey of families receiving applied behavior analysis (ABA) services. The study explored caregiver experiences accessing ABA services, including satisfaction with care and perspectives regarding telehealth service delivery. The study sought to better understand how families access, experience, and navigate ABA services, including the barriers, supports, and service delivery approaches they view as most important.
Key Findings on Caregiver Priorities and Barriers
Caregivers emphasized the importance of accessible, collaborative support, practical strategies that could be implemented within daily routines, and services responsive to the unique needs of their child and family. Families consistently identified communication with providers, continuity of care, and coordination of services as important factors shaping their overall experience.
Caregivers also reported substantial barriers to accessing services, including delays in obtaining diagnostic evaluations, delays in accessing ABA services following diagnosis, difficulty locating experienced providers to meet their child's unique needs, and the impact of treatment demands on work and family life.
Telehealth Perspectives and Geographic Disparities
While many caregivers identified benefits associated with telehealth service delivery, including increased flexibility and improved access to care, they also raised important questions about implementation. Families expressed interest in understanding how telehealth compares to in-person services and what approaches are most effective for supporting participation, engagement, and positive outcomes across different children and family circumstances. Additional analyses identified disparities based on geography, with rural families reporting significantly greater barriers across multiple aspects of service delivery.
From Findings to Trial Design
Collectively, these findings informed the development of a community-engaged research agenda focused on addressing barriers to service access, improving caregiver support, optimizing telehealth service delivery, and developing more responsive models of behavioral health care for autistic individuals and their families. These priorities directly informed the development of the COACH clinical trial, with caregiver input helping shape the study's research questions, design, and implementation. Publication of the trial protocol provides clinicians and researchers with a detailed description of how caregiver-identified priorities were translated into the study design prior to the release of outcome data.
Dr. Scott Hall, Professor in the Department of Psychiatry and Behavioral Sciences at the Stanford School of Medicine (搜索), noted that "These publications add to the emerging evidence base on community-engaged research in autism by systematically examining caregiver perspectives and documenting how those perspectives can inform clinical research. The findings provide valuable insight into family priorities and may help inform future research initiatives."
Together, these publications demonstrate how caregiver perspectives can inform behavioral health research, clinical trial development, and future research priorities. The findings highlight the role of community-engaged research in understanding and addressing real-world challenges related to service access and delivery for autistic individuals and their families.