How much stress does the family member most responsible for helping and caring for the patient experience? The answer to that question may surprise you, according to the results of a new University of Michigan study.
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 men in similar situations did. 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., professor of nursing at the University of Michigan. "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."
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 patient and spouse reported significant disruption in family and social life.
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 Northouse. "The caregiver becomes worn out, and they're less able to problem solve and manage some of the daily care responsibilities."
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."
Because caregivers often take on multiple roles and responsibilities, it's very important that they get support. 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 affect 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 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."
Delores Todd concurs. Her husband had prostate cancer that has 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."
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 it's not a luxury, it's essential that they maintain their own wellbeing so that they can continue to provide care for the patient who needs them." - By Pete Barkey
Facts about caregiver stress:
· A new U-M study finds that caregivers, especially female spouses, often experience higher levels of stress than the patient they are caring for does.
· Caregiver stress had a direct, negative impact on the patient's wellbeing.
· Caregivers need additional support from other family members and support groups.
· The study's authors say health care professionals need to do a better job of educating caregivers about what issues they will face.