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News Archive - Progress Newsletter Fall 2000 Online

New U-M Study Finds: Family Caregiver Stress Impacts Patient Health

A diagnosis of cancer is an intensely profound experience for the patient, but what's not so apparent is how much the entire family is affected, too.

Researchers in the U-M School of Nursing examined the level of stress experienced by a family member caring for a loved one with cancer. They found that the caregiver often experienced a higher level of stress than the patient did, and the combination of pressure, tension and anxiety had a direct impact on the patient's health. They also found that women who were thrust into the role of caregiver experienced stress to a greater degree than did men in similar situations. The authors say this reinforces the importance of paying greater attention to the needs of the caregiver.

The study was published in a recent edition of the journal Social Science and Medicine. "People are leaving hospitals much sooner and much sicker than they used to," says Laurel Northouse, Ph.D., R.N., Mary Lou Willard French Professor of Nursing. "People used to leave the hospital when they were well. Now, they are often discharged to the care of family members when they're still sick. So, now family members are having to provide very complex care in the home and many family members don't feel prepared to do that."

Dr. Northouse and her colleagues studied 56 patients -- 34 men and 22 women -- with colon cancer, and their spouses. Interviews were conducted one week after diagnosis, but before surgery; 60 days after surgery; and one year after surgery.

They found that both male and female patients reported stress levels peaking at 60 days and then declining as the recovery process began. However, their spouses -- especially female spouses -- continued to have problems adjusting to their roles as caregivers as time went on. Both patients and spouses reported significant disruption in their family and social lives.

Investigators also found that caregivers experienced increased levels of emotional distress and encountered role problems -- reporting difficulties with work, family and social situations.

"This stress over time can wear out a caregiver and what we're finding is, as the stress on the caregiver increases, it has a negative effect on the patient," says Dr. Northouse. "The caregiver becomes worn out, and they're less able to problem-solve and manage some of the daily care responsibilities."

Dr. Northouse says because women typically take on more interpersonal relationships, especially within the family, they are at greater risk of emotional distress. "Women are responsible for managing more roles inside and outside the family and hence, they experience more role disruption and distress when illness occurs."

Photo of  patient consult
Family members are having to provide very complex care in the home and many family members don't feel prepared to do that.

Because caregivers often take on multiple roles and responsibilities, it's very important that they get support. Dr. Northouse says illness is a family disease and "we need to take care of both people -- provide them both with support -- not just the patient. Typically, the primary caregiver doesn't get much support and they really need more from their other family members. They sometimes just need to take a break from the round-the-clock role of caregiver. Other family members should realize this time-out is not a luxury. It's essential because, as we've found in our research, if the caregiver gets worn out, it has a harmful effect on the patient."

The study's authors say health care professionals also need to provide better support. Since caregivers often are quite unprepared for the role they are placed in, they badly need information on what they can expect as a caregiver. They need to know what issues are involved in the typical physical and emotional recoveries, and how to interpret what signs and symptoms are serious and which ones aren't.

"Sometimes caregivers lack confidence in their ability to provide care and when professionals step in and provide information, it really helps the caregiver feel more confident in how to provide that care," says Dr. Northouse. "Caregivers need to know how to assess the patient because this is what has gone on in the hospital and now the caregiver is taking on that role in the home."

Caregiver Delores Todd concurs. Her husband had prostate cancer that had advanced to bone cancer. "I was always left with more questions than answers," she says. "If there had been a nurse or social worker there that stayed with you after a doctor's visit and said 'I understand all that was said, do you have any questions?' -- that's what I needed so much through all of this."

Dr. Northouse says it's extremely important that the caregiver place prime importance on taking care of themselves, too. "Caregivers often focus on their own needs as a luxury, but they're not a luxury. It's essential that they maintain their own well-being so that they can continue to provide care for the patient who needs them."

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