NEW YORKIn an age when hospital stays are shorter and acute
diseases more chronic, family caregivers are increasingly seen as
extensions of the health care system. Yet often they receive scant
preparation from health care providers and little support or
understanding from their employers. Establishing programs to help
caregivers was the subject of a Cancer Care, Inc. teleconference.
Weve just emerged from an era in which birth, death, and
most of the sickness in between were managed in an institutional
setting, said Frances K. Barg, PhD, University of Pennsylvania
School of Nursing, and coordinator of the Strength for Caring
Program. Although it never was much like home, most of us came
to rely on the security of trained professionals carrying for our
loved ones, but most of that has changed now.
Despite these shifts to home care, health care professionals are
often unwilling or unable to take on the job of training the
caregivers, Dr. Barg said. She cited a recent survey of staff in New
York hospitals, conducted by the United Hospital Fund of New York, in
which respondents stated they had to devote their limited time and
financial resources to patients, not caregivers. [Levine C: Rough
Crossings: Family Caregivers Odysseys Through the Health Care System.
Special Report, United Hospital Fund, 1988.]
The staff were also less comfortable in dealing with psychosocial
issues as opposed to physical aspects of care. Language and cultural
issues were also cited as barriers to working with the family.
The lack of preparation, the demands on their daily life, and the
impact on their family and jobs combine to cause resentment, clinical
depression, family problems, a loss of financial resources, and,
according to several studies, illness, death, and even suicide, Dr.
Studies have also shown that caregivers who have a history of
depression, have medical problems of their own, or have been
caregivers for 6 months or longer are at special risk.
Spousal caregivers will have different issues than adult caregivers
of a child, and caregivers unrelated by blood or marriage may have
unique problems. Many times, caregivers who are not related to
the patient feel very disenfranchised by the health care system,
Dr. Barg said. They have few rights to information and often
do not receive the same type of support from others.
programs can facilitate a caregivers adjustment, she said. The
Strength for Caring Program developed at the University of
Pennsylvania School of Nursing is one such approach. It is a 6-hour
support and education program for people caring for a loved one with
cancer at home (see Table).
Supported and disseminated by Ortho Biotech, the Strength for Caring
Program is offered in doctors offices, hospitals, and other
community settings, and is also available to companies wishing to
offer it to employees.
Many employers believe that caregiving is not a workplace issue and
that programs that address these concerns cost too much money. This
is not the case, said Gail Hunt, executive director of the National
Alliance for Caregiving, a coalition of 25 national organizations.
Ms. Hunt said there are many low-cost or no-cost ways to help
caregivers in the workplace. Most companies have some kind of
benefits for employees that could help caregivers. These include
leave of absence, flex time, and telecommuting.
In addition, employers could direct employees to websites offering
information to caregivers. They could hold seminars for caregivers
and support groups during lunch or at the end of the day. The human
relations department could provide resource directories from the
local department of the aging.
Preretirement planning seminars offer an opportunity for discussing
care-givers concerns. The company might include articles about
caregiving in the employee newsletter or make information available
in the cafeteria, including information about help available through
the human relations department.
Ms. Hunt cautioned that employers who do make schedule adjustments
for caregiving employees must be careful not to do so by creating
hardships for other employees. This is an issue that comes up
in child care, too. Without violating the confidentiality of the
caregiving employees, companies should provide opportunities for
employees to discuss these issues together with the line supervisor
so they can work together and come up with a solution, she
Employees at Ortho Biotech, along with those of other Johnson &
Johnson companies located near their main campus in New Brunswick,
NJ, are taking part in the Strength for Caring Program, according to
Mike Thomas, vice president of human resources, Ortho Biotech. The
program is held in three consecutive lunchtime sessions, 1½
The events are heavily promoted in advance. Employees register
confidentially and are provided with written confirmation and brief
background information prior to the meeting, Mr. Thomas said. About
10 to 15 employees from various levels and functions of the company
participate in any given session, and the events are moderated by a
trained Strength for Caring facilitator.
The response to the Strength for Caring program has been really
tremendous. Our employees feel validated in their role as caregivers
and really supported by their employer, Mr. Thomas said.