Talking to children can help them deal with a family member's cancer.
Susan Niebur did everything she could to ensure that her sons enjoyed life despite constraints brought on by her inflammatory breast cancer, she said. Now ages 5 and 7, the boys remember when their mom used to take them to a museum on the spur of the moment. Eventually, her illness confined family outings to the backyard, but it didn’t happen so suddenly that they noticed, she said in an interview last fall. When pain or medication confined Niebur to bed, she played board games with the boys or watched movies. When they asked her to wrestle, she reminded them that Dad is the wrestler, and Mom is the snuggler.
“They can choose a book by my bedside,” she said. “They have me at their disposal.”
Niebur, who died on Feb. 6, made a point to create new normals for her sons as her energy waned, including having friends bring her boys home from school. When the boys came in, she sat with them at the kitchen table and talked about their day until it was time for her to rest again. She called it their “welcome-home ritual.”
Children are resilient, far more so than most adults give them credit, says Kelly Gruber, LMSW, an oncology social worker. Though a family member’s cancer “can be emotionally challenging,” children can adjust to a “new normal” as long as they know what to expect. Keeping life structured and predictable is important, she says.
“From my experience, children want their parents to be honest,” she says. “When parents try to hide what’s going on, kids can imagine far worse scenarios.” Parents should sit down together and tell children in an age-appropriate manner what’s happening, provide reassurance that they will still be loved and cared for, and welcome questions. Social workers or counselors are available, either at a cancer center or in the community, to help facilitate these discussions if parents need help with how to do this, she says. By encouraging open communication, parents can help kids feel safe to ask questions.
From my experience, children want their parents to be honest. When parents try to hide what’s going on, kids can imagine far worse scenarios.
Gruber works with children ages 6 to 16 in “Kids Can Cope,” a twice-monthly program at Banner Thunderbird Medical Center in Glendale, Ariz., where they can get answers in a safe environment. The goal is to empower them and help them realize they are not alone, she explains. “The children get strength from each other, and it’s also a time to take a break, so their own needs as children can be met.”
When a family member has cancer, parents often underestimate the emotional impact on their children, according to a landmark 1996 study. In 76 patient families, parents reported little or no evidence of emotional distress in their children, while the children themselves reported higher psychological stress. Parents did not appear to be aware of their children’s distress and rated their children as asymptomatic, even when children reported elevated levels of psychological symptoms.
A more recent study points to a pervasive need for child-centered support. Researchers analyzed data from 13,385 adults in America with a history of cancer and projected that an estimated 18 percent of newly diagnosed cancer survivors and 14 percent of all U.S. cancer survivors reside with one or more minor children Those numbers translate to 1.58 million survivors living with 2.85 million children, and an estimated 562,000 minor children living with a parent in the early phases of cancer treatment and recovery.
In light of the research, programs such as CLIMB (Children’s Lives Include Moments of Bravery) provide emotional support to children who have a family member with cancer. Nan Bethmann, RN, OCN, an oncology nurse who co-facilitates CLIMB at Marshfield Clinic Cancer Care in Eau Claire, Wis., explains that each lesson is designed to help children identify and express feelings, such as confusion, sadness or anger. Corresponding activities and projects explore healthy ways to cope with these feelings and are taken home each week to share with family members.
Left to their own imaginations, children may believe they can catch cancer or are somehow at fault for causing cancer, she says.
"Parents tell us how much this program helps their children open up about their feelings," says Marcy Elwood, an oncology social worker and CLIMB co-facilitator. She encourages talking to an oncology social worker if no formal program is available nearby.
When it comes to adolescents who are anxious or sad, Paula Rauch, MD, advises parents to assume that they are probably experiencing normal reactions to a life crisis. “It is not a fact of a family member’s illness that kids will become depressed and need medication or a therapist.” Many will benefit instead from participating in virtual or actual group meetings, and especially weekend camps with other peers in similar circumstances, says Rauch, who founded and directs the Marjorie E. Korff Parenting At a Challenging Time (PACT) Program at Massachusetts General Hospital in Boston.
Kathleen McCue, CCLS, a licensed social worker and head of the child life program at the Cleveland Clinic Foundation, says arming adolescents with strategies to help themselves cope is most effective when you get them to agree first that they want to be able to pick themselves up when feeling down. Then help them identify music in advance that makes them want “to dance around the room” or name a friend to call who will talk while kicking a soccer ball back and forth, which is preferable to just sitting and talking, she suggests.
If the parent is depressed or exhausted, find someone who can step in, McCue says. “When you have no energy to parent, it’s hard to care, but kids need someone to care about them.”
Katie Wangelin, MSW, a licensed clinical social worker in Greensboro, N.C., encourages adults to set up safety nets for children. For example, identify someone at school with whom children can connect if they are having a hard day.
“When children are overcome by sadness or anger, they can give a signal to the teacher and it’s understood that they need a break,” Wangelin says. “It gives them a sense of control.”
Older children have the additional burden of peer pressure. They worry about what their friends might think or say, or fear their friends will avoid them because they don’t know what to say or don’t understand what’s going on, Wangelin says. She suggests bringing in one or two of the child’s closest friends so they can “see behind the scenes” of what is going on at home. Then the child will have an ally to turn to who has some understanding of the circumstances.
“I think what they all want to hear is reassurance, that they are not alone, that a lot of people are here to take care of them and that we will prepare them as much as possible.”