Focusing on the Caregiver:
U-M research offers insight into helping caregivers cope, con't.
Family involvement: Patients and caregivers are
encouraged to work as a team to manage the illness.
This includes supporting one another and maintaining
open communication about the illness.
Optimistic outlook: Families are advised to set
short-term goals they can reach, to concentrate on
what's going well and to stay hopeful.
Coping: Caregivers are provided with tools to help them
cope with cancer directly, rather than pretending it's not
an issue. Nurses promote active, healthy lifestyles while
stressing how important it is for caregivers to take care
of their own well-being-physically and emotionally.
Uncertainty reduction: Nurses help families get the
information they need to reduce the uncertainty that comes
with a cancer diagnosis-and they help families find
strategies for coping with questions that have no answers.
S ymptom management: In some cases, addressing
symptoms related to cancer treatment may bring to light
issues that caregivers are having. For example, when
addressing male sexual dysfunction after treatment for
prostate cancer, nurses will encourage female partners to
address their own sexual health concerns that may be related
to menopause.
At the core of Northouse's work are five components identified in earlier research that seem to
help people fare better in the face of a cancer diagnosis. The goal of the FOCUS studies -- named from the acronym of each of the components -- is to encourage
families to develop these healthy behaviors in order to handle the demands of the illness.
As part of the trial, nurses with advanced
degrees met with caregivers and patients in their
homes to discuss ways to work as a team to manage
the illness; to develop a more optimistic outlook;
to find ways to cope with cancer directly, rather than by pretending it isn't an issue; to
reduce the uncertainty that comes with a cancer
diagnosis; and to manage symptoms -- both for
the patient and for the caregiver.
Northouse and her colleagues have conducted
three FOCUS studies involving breast, prostate,
lung and colorectal cancer patients. Although
results of the latest study are still pending, earlier
studies with breast and prostate cancer patients
have been promising.
In an article published in the journal Cancer, Northouse reported that after four months of the
program, caregivers for spouses with prostate cancer reported higher quality of life and more confidence in their ability to provide care; better
communication with their partners; less negative appraisal of the caregiving experience; and less uncertainty, hopelessness and symptom distress
than caregivers who did not receive the intervention.
Patients also reported less uncertainty and better
communication after four months, as compared
with those who did not receive the intervention.
Some effects were sustained up to a year later.
For Kate and Nick Ebli, participating in the FOCUS program led to a revelation that Kate hadn't expected. Kate was originally diagnosed with breast cancer in 2004;
last year, doctors found that it had returned and spread to her lungs and liver. During one of the FOCUS sessions, the couple was asked to talk about what
they most feared.
"I thought his response would be losing me, but his response was not being in a position to help me -- being somehow helpless to attack this dragon," said Kate,
a state representative from Monroe County. "I hadn't thought about that."
"It's just very hard for me to walk away from something without fixing it," said Nick, a retiree and Marine Corps veteran who served in Vietnam.
"We've been married for a very long time, we have a great relationship with each other, we have wonderful support from family and friends, but it was helpful to
acknowledge that there are some things you just don't want to talk about," Kate said. "You just want to go about living life and enjoying life, but when
circumstances are such that you have to deal with cancer, I found it helpful to have someone else there to help us talk about it. And I didn't
think we were the people who needed that."
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