Scott Harrison was the primary caregiver for his wife, Barbara Blaine Kinne, who was battling endometrial cancer.
Despite over 30 years of working in the life sciences, it took “all of his intellectual capacity” to understand his wife’s needs, available services and treatments, and how to navigate the health care system. Along with that, it took a physical and mental toll on him, as he took Barbara to Pennsylvania hospitals in State College, Hershey, Philadelphia and eventually UPMC Magee-Womens Hospital in Pittsburgh.
“I often asked myself how others with less technical knowledge and financial independence managed. I observed a similar pattern with Barbara’s father, in which the various elements of the medical system did not communicate; it was left to the family to sort through treatment options with little guidance from any of the various specialists involved who did not act in a coordinated and cohesive fashion,” said Harrison, a State College resident.
Kinne died in 2018 after a two-year battle with the rare cancer. However, after the loss and after serving as a resource and observer during Kinne’s parents’ final days, Harrison talked to other caregivers about their experiences. His concerns came with merit.
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 to 4 to 1, and to 3 to 1 by 2050. In 2010, the ratio was 7 to 1.
To meet the needs of patients and caregivers, Pitt and UPMC were recently selected to create the National Rehabilitation Research and Training Center on Family Support, supported by a five-year, $4.3 million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research.
The initiative is a joint effort among Pitt’s Health Policy Institute—where Harrison served as an adviser for its Center for Caregiving Research, Education and Policy—the University Center for Social and Urban Research and the Schools of Nursing, Health and Rehabilitation Sciences, Medicine and Public Health. The goal is to use the best in modern medical research to improve the care, health and quality of life of all persons with disabilities and the families and caregivers who support them.
The center, which builds upon 30-plus years of Pitt’s efforts in support of caregiving, is being 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 Pitt’s Department of Health Information Management in the School of Health and Rehabilitation Sciences.
“Caregiving provides a service to our health care 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 wellbeing and they become future patients because of the chronic stress that comes with this responsibility.”
Said Harrison: “What stuns me about this situation is that caregivers often account for more than 95% of the patients’ actual experience and potentially the success of their outcome, so it would seem caregivers should be given a lot of attention."
For Harrison, this new center seems like “a no-brainer.”
“Pitt and UPMC are excellent choices for this center because of the large rural area of Western Pennsylvania it serves. With many underemployed and medically underserved communities in the region, direct access and/or expensive travel to advanced treatment centers may be prohibitive,” he said.
Beach echoed that sentiment.
“It’s a confluence of factors that make this a good place for caregiving research: 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,” said Beach.
The center’s four initial research projects:
- Data analysis to identify at-risk family caregivers for better health care practices. This will be led by Beach and Rich Schulz, Director of the Center for Caregiving Research, Education and Policy.
- 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 and Rehabilitation.
- Research study with local agencies for better caregiving of the elderly, called “Community Aging in Place, Advancing Better Living for Elders Intervention.” This will be led by Pamela Toto, associate professor of Occupational Therapy in the School of Health and Rehabilitation Sciences, and Beth Fields, assistant professor of Kinesiology at the University of Wisconsin-Madison.
- Implementation of a mobilel 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.
“I expect this (center) to be an excellent test of the ability to reach and affect these caregivers and patient outcomes,” Harrison said.
For more information on the center, visit www.caregiving.pitt.edu.