Blaise Morrison, PhD, HSP-P, CRC, LPC, is an Assistant Professor within the Division of Clinical Rehabilitation and Mental Health Counseling, a part of UNC’s Department of Health Sciences. His research primarily focuses on the intersection of family and disability, particularly in understanding the impact of disability on families and the impact of family on the lived experiences of people with disabilities. Morrison is interested in studying the role that the family system plays in health and rehabilitation outcomes and, subsequently, developing family-directed interventions to improve those outcomes.
What began as working with those who had experienced brain injury, stroke and/or spinal cord injury evolved into also supporting families who have been affected by intellectual and developmental disabilities (IDD). Some commonly known forms of IDD include autism, cerebral palsy, ADHD, pediatric brain injury and down syndrome.
Morrison was recently awarded $250,000 over two years from the Eugene Washington Patient-Centered Outcomes Research Institution (PCORI) for Project BENEFIT: Building Effective Networks to Engage Families in Improving Transitions. Dr. Diana Cejas, MD, MPH, a faculty member in the Department of Neurology and at the Carolina Institute for Developmental Disabilities (CIDD), serves as the project’s co-lead.
PCORI supports projects that encourage involvement of patients, caregivers, clinicians and other healthcare workers in patient-centered outcome research. The purpose of Project BENEFIT is to partner with and engage IDD stakeholders in patient-centered outcome research in the area of healthcare transition. Healthcare transition is defined, in this instance, as the transition from pediatric healthcare services to adult healthcare services.
“Historically, there is a large gap in healthcare transition because of the limited number of medical providers trained to work with the IDD population,” said Morrison. “Many people with IDD could be in their 20s and still be working with a pediatric provider, but existing research shows that inadequate healthcare transition to adult providers can lead to poor health outcomes that affect community life, particular in IDD patients that are considered racially/ethnically marginalized.”
Goals and Outcomes of Project BENEFIT
Project BENEFIT involves partnerships with IDD advocacy organizations, including UNC’s Center for Intellectual and Developmental Disabilities (CIDD), Family Support Network of North Carolina (FSNNC), Virginia Commonwealth University’s Partnership for People with Disabilities, and Parent2Parent USA. Each of the partner organizations will play a unique role in supporting people with IDD and their families, with the primary goal of developing trusting, long-lasting research partnerships. Additionally, a stakeholder advisory group comprised of various IDD stakeholders with differing backgrounds– individuals with IDD, physicians, researchers, family members – will oversee the project’s implementation, provide guidance and recommendations, and will co-create the project deliverables.
Goals of the project include:
- Developing trusting, sustainable partnerships to co-create research materials that will help improve engagement of IDD stakeholders in future patient-centered outcome research
- Developing research materials and an infrastructure that increases capacity to conduct future patient-centered outcome research in the area of IDD healthcare transition
- Creating a sustainable network of IDD stakeholders to help plan and conduct future clinical effectiveness trials, so that meaningful evidence-based healthcare transition supports are developed for the IDD and underserved communities.
“The true outcomes we seek through Project BENEFIT are determining how to best ‘co-create’ a healthcare transition research roadmap, with input from IDD stakeholders,” said Morrison. “We’re trying to answer questions about what research steps need to be taken within this area, and what future research should look like.” Other project deliverables include an IDD-accessible video on patient-centered outcomes research and a partnership framework to enhance researcher practices and use stakeholder-informed approaches to IDD research.
Morrison hopes that Project BENEFIT will support the creation of a culture of IDD stakeholder-led research that will help reduce healthcare disparities for people with IDD. “It’s not just about educating,” he said. “This project will help educate and improve healthcare professionals and researchers understanding of effective patient-centered healthcare transition research and services, so they can better meet the unique healthcare needs of people with intellectual and developmental disabilities.”