Through a $4.3 million grant, the Johns Hopkins School of Nursing will become a national center dedicated to improving health and function of people with disabilities and their caregivers. The center will be called RESILIENCE RRTC, short for Research and Education to Support the Science of Independent Living for Inclusion and Engagement: National Center of Excellence Rehabilitation Research and Training Centers.
The funding comes from the National Institute on Disability, Independent Living, and Rehabilitation Research.
"This is such a tremendous opportunity to grow disability and family caregiving research," says Sarah Szanton, who will become the center's director. "This Center will fund five new disability and caregiver research projects while building an infrastructure to disseminate the lessons we learn."
Three key initiatives for the center will include:
- Testing new ways of delivering the Chicago Parent Program and CAPABLE—two well established and evidence-based research programs at the school
- Developing and testing a new program for caregivers who themselves have physical or sensory disabilities
- Disseminating findings by influencing policy and offering plain-language fact sheets that can be distributed to health care organizations and the community
For the Chicago Parent Program, a group-based parenting program that helps reduce behavioral problems among young children, researchers plan to develop an individualized format that can help parents gain skills and confidence in raising young children with social, behavioral, or developmental disabilities. For CAPABLE, which helps low-income seniors with disabilities to safely age in their community, the research team will adapt the program for people with dementia, develop elements that incorporate caregivers, and integrate the program into primary care.
Through its designation as a national center, the School of Nursing will also serve as a hub where assistance can be provided to the community, and information and training can be delivered to postdoctoral fellows and disability/aging service providers. Human-centered design principles, such as engaging end users for continuous feedback, will inspire the research and dissemination methods. Sustainability will be a crucial element to help move the research from trials to more long-term solutions.
Szanton added, "We are thrilled to be working with NIDILRR and the other research centers funded by NIDILRR to support the nation's family caregivers of people living with disability."