"A View from here"

Judy House, Annandale, Va.                 Quilt, 1997

A little over a year ago a suspicious mammogram necessitated a breast biopsy. It confirmed I did indeed have infiltrating ductal carcinoma. It is difficult to describe the emotional turmoil a diagnosis of breast cancer causes. Suddenly you must become an instant expert in an area where you have little knowledge. With help from family, friends, doctors, nurses and an organization called "Y-Me," I became an informed patient and made the difficult treatment decisions.

Because my tumor was relatively small, I elected to have breast-sparing surgery and six weeks of radiation treatment. However, when the pathologist examined my lymph nodes, he discovered one contained cancer cells. That meant three months of chemotherapy treatment before radiation of the breast area could begin.

I realized a very difficult year lay ahead, a year during which I would need the diversion and pleasure that quilting brings. As I wanted to be in a happy place during this period of treatment and adjustment, I decided to design a quilt around one of my favorite places, a flower garden.

© Judy House 1997

Reaching out to families of cancer patients

Interventions help ease family members' stress by including them in patient care.

By Rebecca A. Clay

Some studies have shown that families members can suffer more psychological distress than cancer patients themselves. Yet families don't always get the support they need to cope with the crisis, experts say.

"One of the strongest predictors of how someone with cancer will do is how well their families adjust," says Mary Jo Kupst, PhD, a professor of pediatrics at the Medical College of Wisconsin in Milwaukee. "Yet when we talk about interventions, we're usually talking about intervening with the patient, not the family."

Now that's starting to change. As managed care and other trends shift more of the burden of care from hospitals to patients' own homes, psychologists are increasingly likely to address families' needs as well as patients'. Some are even transforming worried family members into active partners in patients' care.

Families in crisis

Family interventions are most common in pediatric oncology wards, say Kupst and other psychologists.

Families coping with their ren's diagnoses undergo enormous stress as they struggle to assimilate complex medical information and make treatment decisions, says Kupst. Parents must then put their own feelings aside as they help their ren fight for their lives. Siblings can feel frightened, isolated and left out. Although extended family members can offer support, grandparents can also be another source of stress if they start telling their adult ren how to handle the crisis. And since ren's treatment can last for years, so can the emotional and logistical disruption to their families, says Kupst.

Psychologists are just beginning to figure out how to intervene in these cases. "There hasn't been a lot of research on treatments for families of ren with cancer," says Kupst, noting that insurance companies typically exclude family therapy from coverage of cancer claims. "We're not there yet."

What psychologists do know is the importance of assessing the family's psychological strengths and weaknesses early on, she says. Psychologists can then target interventions to families with concurrent stressors or a history of poor coping, helping them strengthen their coping skills.

Ongoing research by nurse and researcher Laurel L. Northouse, PhD, is helping to convince psychologists and other health-care professionals of the importance of such efforts. Northouse, an associate professor in the College of Nursing at Wayne State University in Detroit, has found that cancer can upset family members as much or more than patients.

In a recent study of colon-cancer patients, for example, Northouse found that spouses reported more psychological distress than the cancer patients at the time of diagnosis and one year later. Earlier studies of breast-cancer patients found that husbands suffered as much distress as their wives, and experienced more problems fulfilling work, family and related obligations.

Even more importantly, says Northouse, spouses' distress is contagious. In a study of women whose breast cancer had returned after a remission, Northouse found that husbands' distress accounted for a significant amount of variance in patients' adjustment levels.

"Families have a legitimate need for support because they are distressed but also because their distress adds to patients' adjustment problems," emphasizes Northouse. "When physicians say, 'My primary concern is the patient,' I tell them, 'If your primary concern is the patient, you should be concerned about the family because the family affects the patient.'"

Families as interventionists

Part of the problem is that distressed family members often get in the way of professionals caring for patients, says William H. Redd, PhD, associate director of the Ruttenberg Cancer Institute at Mount Sinai/New York University Medical Center and a professor at Mount Sinai Medical School.

"Parents wring their hands, bug the nurse, get upset," says Redd. "That means physicians and nurses have to cope not only with the ren who are in trouble but with their parents as well."

To solve that problem, Redd pioneered an intervention that channels parents' anxieties into more useful roles. He and other health-care professionals now train family members to become "interventionists" as their ren or spouses undergo painful, frightening procedures ranging from needle "sticks", chemotherapy, to bone-marrow transplantation. Using techniques such as hypnosis, distraction and relaxation methods, family members help patients calm down, control their pain and comply with treatment. Sometimes all it takes is a mother playing video games with her , says Redd.

Family members aren't necessarily better at this than nurses or other professionals, Redd's studies have found, but they're just as good. More importantly, says Redd, acting as an interventionist also distracts family members and helps them feel useful. It's also cost-effective, he says, since family members are typically at the hospital anyway.

Psychologist Susan McDaniel, PhD, helps physicians recognize family members' potential as members of the health-care team--a task that has taken on greater urgency with the advent of managed care.

"So much of health care--even cancer care--is now done on an outpatient basis," says McDaniel, president of APA's Div. 43 (Family) and professor of psychiatry and family medicine at the University of Rochester School of Medicine in New York. "Families have really become the primary health-care providers."

That role shift has intensified families' distress, says McDaniel. Now that women undergoing mastectomies spend 24 hours or less in the hospital, for instance, husbands are frequently asked to perform the potentially upsetting task of draining their wives' wounds. Mitigating that distress can be as simple as including family members in patients' consultations rather than leaving them to languish in waiting rooms, says McDaniel.

"Physicians' training is biotechnical, biomedical, physiological, and physicians vary in the extent to which they get training in psychosocial aspects of care," she says. "Helping them see families as resources rather than sources of irritation is crucial."

Rebecca A. Clay is a writer in Washington, D.C.



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