CHILDREN WHO HAVE PARENTS WITH CANCER

Past work as nurses showed scientists that families needed help in coping psychologically with a scary diagnosis.

Cancer patients know that they might not be living long. They worry about what will happen to their kids, and they think about how much they want to be together and to love each other.

The children of cancer patients feel bad, too. They are sad and lonely, and they don't know who they can talk to because they don't want to make anybody more upset. They pray that nothing bad happens and they can stay together always.

These are a few observations of two Indianapolis scientists who have been studying how cancer affects entire families, not just patients.

"I think the main thing we learned is that you need to talk to teen-agers, you can't count on talking to their mother or their father about whether or not they are experiencing a problem," said Linda Birenbaum, an associate scientist at the Walther Cancer Institute in Indianapolis. "They are more likely to define themselves as having a problem than their mother or father will."

Opening up to a stranger

Sometimes it's easier for kids to open up to someone they don't know, because that person doesn't have an impression of them yet.

"The children I think were fairly open with us about their feelings, and I guess what we learned is that really all of them have a certain fear, either in past or present, about potential loss of their parent," said Donna Yancey, Birenbaum's partner in the study and also an associate scientist at Walther.

"Children don't discriminate that there are some cancers that people do better with and there are some that they don't do as well with," she added.

"To them, cancer is cancer and it's bad."

Helping to cope with cancer

In a recent interview with Children's Express, the scientists explained that they began their study to find ways to help people, both patient and family, to deal with cancer psychologically. Birenbaum and Yancey had worked as nurses, and they heard the same questions coming from cancer patients they cared for.

"They were frequently asking how to approach their children regarding their cancer: `Was this normal in their children?' etc.," Yancey said. "I didn't have the information, and I thought this would be a good way to try and find this information."

Yancey also had a personal interest in the study. Her first husband died of cancer, "so I as a family member knew some of the feelings, and having had someone very close to me that had it, I guess I had a vested interest in it and wanted to help other people with that situation," she said.

With funding from the Walther Cancer Institute and the help of hospitals and doctors in the state, Birenbaum and Yancey obtained the names of cancer patients who might have children still living at home.

"We really wanted kids to be living in the home and to be experiencing what it was like to have parents with cancer during their growing-up years," Birenbaum said.

The researchers sent out to those patients information about the study along with a post card that the patients were to send back if they wanted to participate.

Sixty-six families agreed to be interviewed and, for 1 1/2 years, Birenbaum and Yancey made regular visits to their homes to see how all members deal with a parent or spouse with cancer.

The patients in the study had different types of cancers with different prognoses. Of the 66 patients, 52 were mothers and the rest were fathers. Altogether, 116 kids ages 6 to 18 participated in the study.

For the interviews, the scientists would ask the kids where they would like to go so they could feel most comfortable. Most of the kids took them to their bedrooms.

In private, the kids expressed their worries and concerns. Some of them did not know that many people beat their cancer.

"Several of them indicated that they wished that they would hear more about people who lived and who survived because up until that, they thought everybody dies who had cancer," Yancey said.

Feelings intensify

Birenbaum said that one reaction the kids had to their parent's cancer is that they realized how much they loved their parents. Once they knew their parent could be dying, their feelings intensified, she said.

Likewise, parents with cancer found new appreciation for their children.

"I think mothers oftentimes would be concerned about whether or not they will live long enough to see their children grow up," Birenbaum said.

Before the cancer, a lot of families said they put off doing things. Now they live from day to day.

"It seems like there is a lot of them who express appreciation of people and they don't put so much emphasis on things," Yancey said.

The ordeal of seeing their parents with cancer made some of the older kids realize their strength.

"Some of the adolescents said that they felt what (having) a parent with cancer showed them is that `This is really a difficult situation, but hey, I survived it. So if I can survive this, I can survive a lot of other things.' It gave them strength for the future," Yancey said.

But others had difficulties handling their parent's cancer, and it showed up in their behaviors. While the scientists don't expect to be finished analyzing the data for 2 1/2 years, their preliminary findings show that the kids age 11 and older suffered a higher rate of behavioral problems than is expected in the normal population. The problems included anxiety, depression, self- destructive behavior, attention problems, withdrawal and aggression.

A tough question to ask

What was the hardest question for these scientists to ask?

"Probably the `meaning' question _ `What does it mean for your mother or father, or you, for your parent to have cancer?' Birenbaum said.

"Some people cried as they answered that question. . . . Sometimes people told us things that they . . . have never told anyone before."

The families only had to answer the questions they wanted to, and all answers were confidential. The scientists told the kids they would not tell their parents what they had said, but the kids could if they wanted to.

"It's a privilege to be able to talk to these people . . . You may be the first person they have ever told what this experience was truly like for them," Birenbaum said.

"Oftentimes, the partner will maybe not tell his wife or her husband what it was like for them because they don't want to frighten them or burden them or worry them."

The scientists plan to publish their findings in scientific journals and make presentations at scientific meetings once they are finished analyzing the data.

"That way other professionals, nurses or social workers and so forth, can learn from what we have learned and incorporate that into their practice," Yancey said.