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BYU research gives guidance to families struggling with cancer

A new study by family therapists at Brigham Young University found steps family members of cancer patients can take to better cope with the impact of the disease on their lives.

Building on previous research that has shown family support is key to improving patients' lives, the researchers worked with families throughout the therapy process to identify trends in the ways families react to a disease that afflicts more than 10 million Americans.

The study is published in the latest issue of "Families, Systems & Health," a journal of the American Psychological Association. The researchers' recommendations for families, health care providers and therapists follow:

-- Acknowledge cancer's effect on the entire family

"By and large our nation's model of healthcare is still a Western biomedical approach and our primary focus in care is on the treatment of the body," says Jason S. Carroll, assistant professor of marriage, family and human development at BYU and study coauthor. "We're starting to realize the need to pay attention to the emotional and relational issues that are very much a part of the reality of physical illness."

This idea is especially important since it "seemed foreign to [study] participants because illness has been portrayed as an outside entity that is solely controlled by the medical profession," says the paper's lead author W. David Robinson, who conducted the research while a graduate student at BYU. "Families need to continue to learn the role they play in the illness experience without forgetting the role the illness plays in their family."

--- Share in differences and be open about contradictory feelings

Patients and family members struggle to find the balance between acknowledging the reality of cancer in their lives and the extreme of allowing the disease to dominate their lives. One ill mother in the study purposely avoided playing with her 2-year-old daughter so the little girl wouldn't be "used to having that type of interaction" and miss it if the mother died.

"One of the most significant findings was the degree of protection leading to isolation that occurred in the families," says Robinson, who 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 researchers, who also included Wendy Watson, BYU professor of marriage and family therapy, found many opposites among affected families, where some members felt the illness was pushing them together while others felt isolated. Another common reaction was seeking meaning or purpose in the struggle with the disease at the same time other members of the family avoided the subject because of the pain it brings.

After hearing her mother discuss all that she had learned while battling cancer, a teen-age daughter in the study said, "I just want to get past it. Revisiting it all the time is making it more and more like in the present tense."

Carroll stresses that there is room for all those attitudes. "So often the idea of sharing means to be the same, that to share this experience we have to be seeing it the same way, and that is a problem for these families," he says. "The real sharing families need to focus on is acknowledging the various viewpoints, rather than trying to push each other's experience onto one another. When they share this way, acknowledging and validating differences paradoxically brings them closer together."

-- Preserve routines as much as possible

Some study participants struggled with feelings that cancer had taken over their entire lives and dictated drastic disruption, even during gaps in treatment. Although understandable, Robinson says, that is a distraction families should resist.

"Illness often takes away the feeling of normalcy and can disrupt the day-to-day routines that help families function properly," he says. "Finding ways to keep as many family rituals and routines -- such as family dinners or Friday night dates -- will aid the family in coping with the illness. It is imperative that the illness not deprive them of the activities that make them a family."

-- Advocate for treatment and seek help from therapists

The study found that families should not hesitate to communicate clearly with healthcare professionals about treatment.

"Too often, family members suffer needlessly because they do not fully understand a disease, treatment and/or prognosis," says Robinson. "They feel that the medical professionals are too busy to answer their questions or they feel like they do not want to look ignorant so they do not ask their questions. These families must learn to advocate for themselves and obtain all of the necessary answers to their questions so they can make informed decisions on the management of their disease."

Family therapists can help in this area and many others. Researchers also observed that families are concerned about their coping abilities and recommend that they be open to expert advice.

"Rather than just targeting the biological aspects of cancer, there's a real need to address how the illness is impacting family members' relationships and emotional well-being," Carroll says. "The study showed that seeking therapeutic help should be an option families consider in conjunction with their medical treatment."

The research article is copyrighted by the journal "Families, Systems & Health." Those interested may seek a copy at a university library or visit this site to purchase a reprint:

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