8 • SUNDAY, FEBRUARY 23, 2020 • CAREGIVER
FAMILY SUPPORT
CHANGING THE GAME
National research center based in Pittsburgh hopes to use
results from caregiver studies for real-world applications
The new National Rehabilitation
Research and Training Center on
Family Support in Pittsburgh isn’t
the first organization to conduct
research into the challenges of
caregiving.
What they hope will set them
apart, however, is the scope of their
research and what they do with
their findings.
“Our main goal is to make
sure the research we do, and that
others do, gets rapidly translated
into both policy reform and into
practice, whether it’s providing supports
through other organizations
or whether it’s helping clinicians
to integrate caregiver support into
their settings,” said Heidi Donovan,
one of three co-directors of the new
center and a professor of nursing at
the University of Pittsburgh.
In other words, this isn’t meant
to be research that publishes in a
scientific or medical journal and
never makes it into practice in the
real world.
The projects they take on at the
center are ones they hope caregivers,
both locally and nationally,
will benefit from sooner rather
than later.
The center, which is a collaboration
between UPMC and the University
of Pittsburgh, is just getting
up and running, with the manager
and outreach coordinator recently
starting their new positions and a
number of projects already under
way.
It is being funded by a fiveyear,
$4.3-million grant from the
National Institute on Disability,
Independent Living and Rehabilitation
Research, an agency within
the U.S. Department of Health and
Human Services.
One of the reasons Donovan believes
they got the grant to start the
center is because, with the variety
and reputation of experts within
Pitt and UPMC, they will be able
to study caregiving across a wide
spectrum.
That could include caregivers of
those with dementia, cancer, children
with special needs and those
with mental health diagnoses.
The caregivers themselves could
be sandwich caregivers, or those
taking care of both aging parents
and their own children, older
adults who are caregiving and
receiving care themselves and those
who are trying to coordinate care
from a distance.
Among the different groups collaborating
on research in the center
are the Health Policy Institute, the
University Center for Social and
Urban Research, the School of
Nursing, the School of Health and
Rehabilitation Sciences, the School
of Medicine and the School of
Public Health.
“I think Pitt has demonstrated
over the last 30 years that it really
is the hub for caregiving research,”
Donovan said. “I think much of
that is the legacy that Dr. Richard
Schulz, one of the pre-eminent
caregiving researchers in the world,
has created here.
“Also the foresight he and Dr.
Everette James, who’s the director
of the Health Policy Institute, saw
in how much research was going
on at Pitt and brought us together a
couple of years ago to think about
how we could collaborate.
“We were poised to bring together
people in very diverse fields
and put together a proposal that
spans different illnesses and the
life course really in a way that few
institutions have done.”
There are four projects, three
involving interventions, which researchers
at the center are working
on.
One is to develop, then put into
trial, a mobile health application
for caregivers of patients with
spinal cord injury, Spina Bifida and
Cerebral Palsy.
Another is a mobile health
program designed to help patients
with cancer-related limitations and
disabilities and their caregivers
reduce those disabilities, return to
full function and reduce anxiety
and depression.
It will focus on those who live in
rural areas and don’t have easy access
to an academic medical center.
The third is based on the Capable
Project, which will identify older
adults at risk of not being able to
remain independent at home and
bring in occupational therapists,
handymen and others to assess
the home’s safety, work with the
individual, make changes to the
home environment when necessary
and educate and support the family
in order to help the person remain
at home.
“It’s really neat because we’re
collaborating with the local Area
Agency on Aging, and if it proves
to be effective, it could roll out in
AAAs across the country,” Donovan
said.
“Those are the kind of projects
we’re looking for, that can be rolled
out directly.”
Scott Beach, another co-director
of the center and interim director
and director of survey research at
the Center for Social and Urban
Research, is heading up a fourth
project.
It will pull data from multiple
national data sets to identify at-risk
caregivers across lifespans and
understand who’s at risk and why
in order to guide future research
and practice.
They’ll still publish findings in
journals, Beach said, but one of the
focuses of the center will be to take
what they find and disseminate the
information in ways that people
can understand.
“(We want to) get things out
there quickly so that families and
the people in those situations can
get practical, hands-on advice and
techniques of things that could
work and what might put someone
at risk or things to avoid,” he said.
“We always talk about making
our work relevant to the public
in academia, but who reads those
journals other than other academics?
Through our website and
other channels, we hope to offer
information in a more digestible
fashion with a quick turnaround
so that it might be able to help
someone.”
The need to support caregivers is
one that will only grow as the population
continues to age, hence the
need for researchers to share what
they learn quickly.
According to a 2015 AARP study,
family caregivers provide $470
billion in services per year, and the
ratio of caregivers to care recipients
is expected to drop from 7:1 in
2010 to 3:1 by 2050.
The center also plans to do direct
training and seminars for caregivers,
such as the inaugural Cancer
and Caregiving Research Conference
and Caregiver Workshop held
this month.
The first day of the conference
was geared toward academics,
while the second was dedicated to
caregivers.
“One challenge we have is we’re
not trying to reinvent the wheel;
there are a lot of people out there
doing good stuff,” Beach said. “But
we can leverage partnerships, and
in talking to a lot of people in the
area, there are a lot of potential
partners that can be a pipeline to
what we’re trying to get out there to
the community.
“That’s what we’re trying to do
locally.”
You can learn more and find
news and resources at the center’s
website: caregiving.pitt.edu.
BY KAREN PRICE
FOR TRIB TOTAL MEDIA
“We always talk about making our work relevant to the public in
academia, but who reads those journals other than other academics?
Through our website and other channels, we hope to offer
information in a more digestible fashion with a quick turnaround so
that it might be able to help someone.”
SCOTT BEACH
CO-DIRECTOR OF THE NATIONAL REHABILITATION RESEARCH AND TRAINING CENTER AND INTERIM
DIRECTOR AND DIRECTOR OF SURVEY RESEARCH AT THE CENTER FOR SOCIAL AND URBAN RESEARCH