An entire family "has cancer" when one of its members suffers from the disease, according to BYU family therapists. And their research shows that family members of cancer patients can take steps to cope with and limit the disease's impact.
The study suggests that traditional care needs to expand and embrace the whole family, not just the patient — which will actually help the patient, too.
"We found that targeting and paying attention to the emotional, psychological and social aspects are critical," said Jason S. Carroll, assistant professor of marriage, family and human development at Brigham Young University and a study co-author. "Cancer and other serious illnesses are family illnesses. It's striking how much spouses, children and other family members are affected. They had cancer, too."
The research was recently published in Families, Systems & Health, a journal of the American Psychological Association.
"One of the most significant findings was the degree of protection leading to isolation that occurred in the families," said lead researcher and author W. David Robinson in a news release about the study. He conducted the research while a graduate student at BYU and is now associate director of behavioral medicine at the University of Nebraska Medical Center. "These families cared about each other so much that they did not want to burden each other with their struggles. We found that this led to isolation and individual suffering. Not only did the process of sharing their personal experiences not add to the burden of other family members, but it contributed to greater connection and decreased suffering."
The study was somewhat unusual in that families with a member who had cancer were both study subjects and researchers on the project, Carroll said. They were in therapy to help cope with the disease and in research sessions where they discussed what helped them and what didn't about the therapy.
The research points out the importance of "shared experience building," where different members of the family tell each other their own feelings and experiences with the disease and its impact. "They often had very different views of things," Carroll said. But instead of the differences driving families apart, researchers said it brought them closer. "It's a validation process."
Researchers saw clearly that "for many families, the cancer patient was not the individual most struggling with the illness." Children worried about what would happen to them, for instance. When those fears were expressed, they could be addressed. In one case, a teenage girl who was swallowing her fear "was actually creating more stress for her mom," who had cancer, Carroll said.
They suggest that both the families and the medical professionals acknowledge the impact of cancer on the entire family. Families also need to acknowledge their different views and ways of dealing with disease. Preserving routine — not letting everything in life revolve around the cancer and its treatment — is very important. Routine helps families function, Robison said.
Finally, the researchers said families need to communicate clearly with health-care professionals about treatment and be advocates for both treatment and their own needs.
It's not uncommon, the research showed, for family members to "suffer needlessly" because they did not really understand the disease or some aspect of treatment or the prognosis. They need to get answers, even if they feel that health-care providers are too busy to answer questions or that asking might make them look ignorant.
The study showed some opposites, like the family where someone with cancer was trying to find meaning in the struggle while a loved one wanted to avoid the subject entirely because it was too painful.
While everything seems to revolve around the medical treatment being used to battle cancer, the researchers hope their work will encourage health-care providers, patients and their families to address the other aspects of the disease and its impact as well, Carroll said.
Wendy Watson, BYU professor of marriage and family therapy, also worked on the study.
E-mail: lois@desnews.com