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Science Forum Index » Medicine - Cancer Forum » Worth Repeating - Helping the Helpers
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| E.Nigma |
 Posted: Tue Dec 19, 2006 9:17 pm |
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Aiding Cancer Caregivers
http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_021406
During any given year, an estimated 50 million people provide care
for an extended period to a loved one with diseases such as
Alzheimer's, Parkinson's, and, increasingly, cancer. In the latter
case, researchers have now documented not only the extent of the
duties these "informal caregivers" provide, but also the hefty
emotional and physical toll it can take on them.
The role of informal caregivers in cancer care has expanded
exponentially over the past decade, says Dr. Ann O'Mara, a program
director in the NCI Division of Cancer Prevention. Among the chief
reasons are: treatments are improving, and people with cancer are
living longer; and many cancer treatments now are done in the
outpatient setting, leaving problems such as side effects to be
addressed at home.
"Caregivers are doing many things that were being done in a hospital
20 years ago," Dr. O'Mara says. "Things like providing wound care,
administering medications, monitoring symptoms. So a lot of the
responsibilities of formal caregiving have been pushed onto the
informal caregiver. But along with that hasn't come the training they
need to do the job."
This situation has created serious financial, physical, and emotional
issues for patients and caregivers. Even the most well-intentioned,
hardest working caregiver may not be in a position to ensure quality
treatment. This may be especially true for those who are older and
have their own chronic health problems, as well as for very young
caregivers who simply are not prepared to take on that kind of
responsibility.
On the latter point, for example, a study released last September by
the National Alliance for Caregiving (http://www.caregiving.org/)
found that as many as 1.4 million youths between ages 8 and 18 were
providing care to a relative; 400,000 of these were children between
8 and 11.
"We're asking the patient and their family members to be alert to
symptoms that could be side effects of treatment; to monitor the
frequency, intensity, and even patterns of those symptoms and
complications; and to make decisions like whether to go the ER or
increase pain medications," says Dr. Barbara Given, head of the
Family Care Research Program at Michigan State University.
The emotional and physical strain of caregiving - which for many
becomes the equivalent of a full-time job - can lead to problems such
as depression, insomnia, and, as seen in one study of older
caregivers, an increased mortality risk.
"There is a feeling of being overwhelmed that a lot of informal
caregivers face," says Dr. O'Mara. "There is sense of loneliness and
isolation."
Numerous studies have documented depression and other psychological
problems among caregivers. A study of 200 cancer caregivers published
last October in the Journal of Clinical Oncology, for instance, found
that 13 percent met standard criteria for a psychiatric disorder.
Although NCI and several other NIH institutes are funding studies to
aid caregivers in tasks such as symptom management and managing their
own health, research into such interventions is still in its infancy.
And researchers are just beginning to address how the quality of care
provided in the home affects patient outcomes.
In the meantime, says Dr. Carolyn Messner, director of Education and
Training at CancerCare, a national New York-based nonprofit
organization that offers psychosocial, educational, and financial
services to cancer patients and their families, there are ways to
ease caregivers' burden.
"There is practical help out there," she says. "But often we have to
help caregivers ask for help."
Many communities and organizations, she explains, offer services to
help with tasks including grocery shopping, meal preparation,
personal care, and transportation. CancerCare also provides financial
assistance for things like childcare, transportation, and pain
medications to patients and families. All 50 states have programs
(http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1272)
that offer assistance for long-term caregivers.
To ensure they can better understand issues such as managing
symptoms, Dr. Messner advises caregivers and patients to be more
proactive in communicating with their oncologists and other health
care providers.
"Ask for special time to meet with the doctor," she says. "And ask
permission to bring a tape recorder so you can record what is said
because these are very critical discussions."
The burden for outreach, however, shouldn't all be on the caregiver
and patient, stresses Dr. Michael Rabow of the University of
California, San Francisco. In January 2004, Dr. Rabow and colleagues
published a paper in the Journal of the American Medical Association
that recommended actions clinicians and their staffs can take to
support caregivers, particularly in end-of-life situations.
Although oncologists and other clinicians treating cancer patients
have real limitations on how much time they can spend with
caregivers, Dr. Rabow says little interventions by clinicians can do
a lot for caregivers' well-being and their caregiving work.
"We have some data to say that when clinicians spend just a few
minutes listening to the concerns of the family caregiver, just being
an empathetic listener, it decreases their risk of depression," he
notes.
He also suggests that clinicians take every opportunity to support
family caregivers' work and address the common feeling that they
aren't doing enough or doing well enough.
"Turn to the family caregiver and say, 'I think you are very
committed, and I can tell from seeing your mother or your husband
that you've done an amazing job as a caregiver,'" he says. "In many
cases, the caregiver will start crying, because often they live
entirely in a world dedicated to that sick person."
By Carmen Phillips
NCI has produced three new booklets on caregiving:
www.cancer.gov/cancertopics/coping.
=====
Do you know someone who would enjoy receiving the NCI Cancer
Bulletin? To send a copy of the latest issue to a colleague, visit
www.cancer.gov/ncicancerbulletin.
E.
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