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Taking Care of the Caregiver

Study shows caregivers suffer the emotional impact of cancer long into the future

Caregivers are at least as vulnerable to the long-term emotional and social impact of cancer as the surviv ors they cared for, according to a recent study published in the Journal of Clinical Oncology.

"We've known caregivers carry a heavy burden that has been underreported and underappreciated," said Karen Hammelef, M.S., director of U-M Cancer Center Patient and Family Support Services, of the article published by University of Florida researchers. "This is the first study of its kind to look at long-term effects on caregivers."

The study focused on survivors who had undergone blood and marrow transplants and their partners or spouses. Researchers followed patients and caregivers for about seven years after transplant and compared caregivers to a control group. The control group was composed of people who were acquaintances of the study's survivor participants.

Caregivers reported more fatigue, depression, and problems with sleep and sexual health than those in the control group. Partners were three-and-a-half times more likely to be depressed than non-caregivers, but they were less likely to receive mental-health services than cancer survivors in the study.
In addition, caregivers reported less social support and spiritual well-being and more loneliness than both their survivor partners and the control group. In terms of post-traumatic growth -- a measure researchers use to gauge personal growth or benefit that may come from difficult situations -- cancer survivors reported higher levels than caregivers.

"The next question is what do we do to prevent these long-term effects and enhance post-traumatic growth?" Hammelef said. "We know there are many effective therapeutic interventions for survivors; our challenge is to identify similar interventions for caregivers and ensure their access to them."

Because the Cancer Center recognizes that caregivers' emotional needs are no less important than those of cancer patients, Hammelef said, several Patient & Family Support programs are available to caregivers. In addition to the Complementary Therapy Program -- which features art therapy, music therapy and guided imagery -- the Psych Oncology Clinic provides counseling to caregivers and family members as well as patients.

Claire Weiner, a social worker at the clinic, said the caregivers she sees are often exhausted. They are caring for someone who is ill, struggling with stress and worry that comes with a cancer diagnosis and continuing to run their households and go to work.

Weiner said she helps caregivers work through feelings of guilt that they aren't able to do everything as well as they once did because of the overwhelming level of responsibility they've had to take on. She also helps caregivers understand that it's natural to sometimes feel angry.

"Some of this is about giving yourself permission to have feelings," Weiner said. "They think the only feelings it's OK to have are compassionate ones. The primary thing we try to do is help them understand that just because you have a range of feelings, it doesn't mean you're a bad person. It helps to take the pressure off."

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