From the expert: How to help families whose children have cancer
February 12, 2014 | by Roberta Nichols
Learning that a friend or colleague’s child has been diagnosed with cancer can leave people wanting to help – then stopping short because they have no idea how to do so.
“So often, people don’t know what to do or say, so they back off, waiting for the family to reach out. Meanwhile, the family is in chaos and trauma, and doesn’t know how or when to reach out,” said Jeanelle Folbrecht, Ph.D., associate clinical professor of psychology in the Department of Supportive Care Medicine at City of Hope.Folbrecht's overall advice: “Stay engaged with the family in a way that’s not intrusive … that shows that you care, are willing to help, and that you don't feel helping is a burden,” she said.
In this interview, she offers some guidelines on how best to bring comfort.
Saying the right thing at the right time
“Many want to be able to say something that soothes and brings comfort to the patient and family. You are not going to be able to say something that magically helps them feel better or helps soothe the turmoil and the pain they’re experiencing," she said. "Instead, remember that your presence and support speaks volumes more than any words."
The wrong things to say generally come under one category, Folbrecht said. “Don’t say things like, ‘It’s going to get better.’”
Unless the parents say it first, avoid comments that provide a meaning to the experience like, “There’s a purpose in this for you,” or “This is all for the good.” Putting the situation in a religious framework may be helpful to some, but is outside the experience of others.
Try not to say things that minimize their trauma or distress. Instead, assure them, “I’m with you. I see you’re suffering. If you want to talk about it, I’m here. Let me know how I can help.”
Connecting with families who seem shut off
Sometimes, families simply can't respond to offers of support due to the demand of medical appointments and the care of their child. Stay engaged with them anyway, Folbrecht advises. “They’re going to need you.”
Offer tangible suggestions to help, phrased in a way that families can comfortably decline. For instance, send them a text that says: “I’m picking up dinner. Can I pick up dinner for you guys?”
Also, offer to help with the patient’s siblings: Pick them up from school or invite them over to play with your kids to give them a reprieve from the emotional upheaval. “No matter what we do, siblings are going to feel left out, lonely and disconnected," Folbrecht said. They may even be living with other family members (while the sick child is hospitalized). One of the things causing stress for parents (besides worrying about the patient) is feeling that they’re neglecting their other children.
"This is often also a source of stress for siblings years later, who still may be resonating with that year that their parents were gone," she added.
Arranging a hospital visit
"Rather than telling a family, ‘I’d love to come and visit, ask them, ‘Would a visit right now be helpful?’ and also, ‘How long should I stay?’" advises Folbrecht.
Observe signs posted in the unit, particularly about precautions you should take, such as washing hands and wearing masks and gloves, and how many visitors are allowed in the room. Also pay attention to cues from parents, who often feel compelled to be good hosts. “That’s their domain. They’ll offer a seat and drinks, and often won’t say anything if you don’t wash your hands or stay too long," Folbrecht said.
Managing conversation in the hospital
"When we don't know what to say to patients or families, we often want to begin with talking about daily events or news," says Folbrecht. There are some families and teen patients who find this helpful and that it increases their connection to community and normal life, she said. "But for some families and teens, hearing about events in which they cannot engage or about daily dilemmas when they are facing life-threatening dilemmas can be quite challenging. As you talk, tune into the family's response.
"The way you can make a difference in their lives is listening, giving them real tangible help, being there for them in the times they’re in crisis, and not being somebody they have to care of or entertain.
Being mindful of parents' attempts to parent
Though Folbrecht reminds parents of pediatric oncology patients that they still need to parent their children, relatives may unintentionally undermine parents’ efforts. “It can be hard for grandparents, aunts, uncles who are so sad and feel so grieved that they want to comfort the child,” and urge parents to relax their behavioral standards.
Folbrecht urges parents to be empathic, but also to set boundaries and expectations for their children. “This is still a developing person. You need to be engaged in stimulating their cognitive and social development, so continue to be a parent for those behavioral things you’ve been working on – overactivity, talking back. That will create for your child a sense of safety; that things aren’t so bad that all of a sudden I don’t get parented and I get everything I want in the world. That can be very scary for a child. They might look like they like it, but they do get scared.”
Staying in touch after the treatment
Even though the patient and family may be through with treatment, they’re still suffering its effects. “Maybe the child is behind in school, maybe siblings are struggling from the time they didn’t have that parent. There may be financial issues, loss of job. You can still help out with food, doctors’ visits, financially or by organizing a bone marrow registry drive," Folbrecht said.
"It takes a long time for them to get back out of the crisis/tragedy mode,” she said.