University taking the lead on caregiving research


Everette James, interim dean of the Graduate School of Public Health, told the researchers gathered at Pitt’s first Cancer and Caregiving Research Conference on Feb. 13 that “your area has become sexy.”

The emphasis on caregiving is just part of the trend of “finally putting the patient at the center of health care in this country,” James said.

“The combination of patients being discharged earlier and people with disabilities and older adults clearly preferring to be cared for at home is really starting to place a greater share of the responsibility on home care and family supports,” James said.

This has led, he said, to a national and local emphasis on caregiving. Researchers like those gathered at the conference are defining the needs of caregivers.

“Cancer caregiving researchers have largely led the way in advancing research as caregiving has become a national priority,” James said.

Policy makers also are catching up on caregiver needs, he said. Several initiatives, like the National Family Caregiver Support program and Lifespan Respite Care program, have been funding increases. States have started to increase the use of Medicaid waivers focusing more on home- and community-based services, and are beginning to allow patients to select and pay their own caregivers, even family members.

Some states are requiring paid family leave and there’s been discussion of updating the 1993 Family and Medical Leave Act, he said, and companies are realizing that more flexible working arrangements can be good for profitability.

In the past 10 years, 40 states have passed the CARE (Caregiver Advise, Record, Enable) Act, which is designed to assist family caregivers to ensure a smooth transition when the people they care for are moving between home and hospital. It requires hospitals to identify and train caregivers during the discharge process.

A study done at Pitt found that when you integrate caregiving into the discharge process you can reduce readmission by 20 percent.

In 2018, a bipartisan vote in Congress passed the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act, which calls on the Department of Health and Human Resources to develop a national caregiver strategy.

All of these actions show that “there is a real and sustainable wind in the sails of caregiver research,” said James, who pointed out that the National Institutes of Health and the National Cancer Institute are supporting more caregiving research every year.

Because Western Pennsylvania has a larger older population, Pitt has been building itself up as a center for caregiving research, resources and best practices, James said. The University was able to get a grant to establish the National Rehabilitation Research and Training Center on Family Support and the Center for Caregiving Research, Education, and Policy because they’ve been working directing with community health partners on these issues.

Michelle Mollica, a program director at the National Cancer Institute, gave researchers a rundown of some of the projects the NCI is looking to fund. She said the institute currently has 37 grants focused on cancer caregiving, particularly in intervening with cancer caregivers to improve patient and caregiver health outcomes and optimize health care utilization.

Specific topics include advanced care planning, caregiver training, caregiver employment issues and communication between caregivers and patients. Another area being researched is maximizing the positive impact of technology to help caregivers.

Those interested in pursuing funding grants can find more details on the NIH and NCI websites.

The conference also included a day of workshops for caregivers on Feb. 14, with topics such as “Balancing Life While Supporting Someone with Serious Illness” and “Caregivers: Worth Their Weight in Gold.”

Susan Jones is editor of the University Times. Reach her at or 412-648-4294.


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