Grant aims to support underserved caregivers
Researchers are looking for new ways to support underserved caregivers, especially those who have language or cultural barriers.
UIC’s College of Applied Health Sciences Institute on Disability and Human Development, in partnership with Brandeis University, has been awarded a five-year, $4.3 million Rehabilitation Research and Training Center on Family Support grant from the Administration for Community Living’s National Institute on Disability, Independent Living, and Rehabilitation Research, part of the U.S. Department of Health and Human Services.
Sumithra Murthy, the project’s principal investigator, said the institute has long been known for its efforts to meld aging and disability research, practice and policy. However, she added, more work is needed to understand the experiences of Hispanic, Black and LGBTQ+ caregivers.
“Caregiver groups from minority, racial, ethnic or other sexual-orientation groups have not been studied sufficiently to provide the evidence needed to address their needs,” said Murthy, who is also a visiting clinical assistant professor in the department of disability and human development at UIC. “It is critical to build knowledge on the lived experiences of families caring for a member with a disability, especially those who are underrepresented in research.”
The project’s goal, Murthy said, is to “improve family support, policies and practices, as well as improve community living and participation outcomes for people with disabilities and their families.” The project will create a national resource center on family support within the institute, providing families and caregivers with training, technical assistance and information and disseminating findings to health care professionals and policymakers. A task force will oversee the center’s activities and ensure that its research-based information is effective, usable and accessible.
The project will focus on people with intellectual and developmental disabilities, an often-overlooked group. Tamar Heller, distinguished professor, a co-principal investigator on the project and director of the Institute on Disability and Human Development at UIC, said roughly 72% of people with developmental disabilities live with their parents or families.
“There are personal barriers within families, so sometimes the needs of the families might be different than the needs of the person with disabilities,” Heller said. “The new center will focus not only on understanding these complex needs and relationships across different cultures, but also testing interventions that help families and people with disabilities in planning for the future and in promoting their health as they age.”
Overall, Heller said, the project aims to enable the underserved.
“The philosophy that we have is very much about empowerment, both for the family and the persons with disabilities,” she said.
Additional UIC researchers on the project include Kelly Hsieh, David Camacho, Randa Abdelrahim, Jae Jin Pak and Timotheus “T.J.” Gordon, Jr., in the department of disability and human development; Tanvi Bhatt in the department of physical therapy; and Spyros Kitsiou in the department of biomedical and health information sciences.
Collaborators and partners include Self Advocates Becoming Empowered; the University of Missouri-Kansas City; the Sibling Leadership Network; the National Hispanic Council on Aging; the National Association of Councils on Developmental Disabilities; and the National Alliance on Caregiving.