The University of Pittsburgh and UPMC faculty have been selected to create the National Rehabilitation Research and Training Center on Family Support.
Through a $4.3 million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), the center will serve as a national hub that leverages modern medical research to improve the care, health and quality of life of all persons with disabilities and the families who support them.
The center will be directed by Heidi Donovan, professor in the School of Nursing’s Department of Health and Community Systems; Scott Beach, interim director and director of survey research of the University Center for Social and Urban Research; and Bambang Parmanto, professor and chair of the Department of Health Information Management in the School of Health & Rehabilitation Sciences (SHRS). It is a joint effort between Pitt’s Health Policy Institute, University Center for Social and Urban Research and the Schools of Nursing, Medicine, Public Health and SHRS.
“It’s a confluence of factors that make Pittsburgh a good place for caregiving research,” Beach said. “We have a high concentration of researchers in one area, we have one of the oldest populations in the country in Allegheny County and we have a major health system with UPMC.”
The need is greater than ever for direct services and support programs to improve the care and quality of life for the estimated 61 million Americans living with a disability. Caregivers provide about $470 billion in services every year, according to research by AARP. By 2030, the ratio of caregivers to care recipients will decrease significantly from 4 to 1, and from 3 to 1 by 2050.
“Caregiving provides a service to our healthcare system, and these caregivers are rarely recognized or trained adequately,” said Donovan. “Undervalued and under-resourced caregivers have a more difficult time providing the kind of care their loved ones need. It also comes at a risk to their own well-being and they become future patients because of the chronic stress that comes with this responsibility.”
This five-year grant builds on 30-plus years of multidisciplinary research in caregiving led by Richard Schulz, director of Pitt’s Center for Caregiving Research, Education and Policy.
A central theme of the Center on Family Support will be a focus on disability and family support over the life cycle. The center’s four initial research projects include:
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Data analysis to identify at-risk family caregivers for better healthcare practices. This will be led by UCSUR’s Beach and Schulz.
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Development of mobile health interventions, such as smartphone apps, for family caregivers and persons with spinal cord injuries, spina bifida and cerebral palsy. This will be led by Parmanto and Brad Dicianno, associate professor in the Department of Physical Medicine & Rehabilitation.
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Research study with local agencies for better caregiving of the elderly, called “Community Aging in Place, Advancing Better Living for Elders (CAPABLE) Intervention.” This will be led by Pamela Toto, associate professor in SHRS, and Beth Fields, assistant professor of occupational therapy at the University of Wisconsin-Madison.
- Implementation of a mobile health-supported rehabilitation program for persons with cancer-related disabilities and their family caregivers. This will be led by Donovan and Grace Campbell, assistant professor in the School of Nursing.
“Having all these interdisciplinary teams in one location will allow us to put together intervention that works in relatively rapid succession and efficiency,” said Parmanto.