Social worker Marcia Carlson now works with oncology patients at the Virginia Piper Cancer Institute in Minneapolis, Minn., but she spent her early career in Hawaii ministering to adolescents in group homes. There, she not only worked on healing broken souls, but also mending broken housewares. At one place, she found donors to replace scratch-and-dent furniture and an old stove propped up with a broom.
"That's where I first realized that the environment people are treated in is very important," she says. "Because those kids didn't run away, and we had fewer violent outbursts" after the improvements.
At Virginia Piper, too, Carlson perpetually looks for ways to spruce up the place. She helped establish Healing Harmonies, a program where visiting musicians perform in the hospital lobby and on patient floors. She was chair of the healing environment committee, which, among other things, got nurses to better monitor their noise level with a "yakker tracker" that lets them know when they're getting too loud.
One of Carlson's recent de-cluttering projects involved streamlining the morass of reference materials on talking to children about a loved one's cancer. "There are lots of good books that have been written, but they're rather big books, and it's very hard for cancer patients to focus on something for a very long period of time," she says. "So we wanted to write something simple and bring in some of the ideas that have been around for a while."
With the help of a $10,000 grant from the Pentair Foundation, she embarked on a three-month project to cull the best advice from existing texts about cancer into a bite-sized book called Simple Talk for Tough Times: Talking with Children about Cancer. She used the grant money to hire an editor and an illustrator and pay for production costs.
Friendly, yet direct, and charmingly punctuated with storybook-style illustrations, the book avoids excessive cheerleading, preaching or clinical jargon. The pages are held in a small three-ring binder, with sections organized according to age so adults can pick and choose what they want to share, and leave out what doesn't apply to their families. A section called "Special Circumstances" is geared toward single parents and families with members who have special needs.
"As soon as patients hear that we have this type of book available, they're wanting it," says Connie Fiebiger, R.N., director of the Virginia Piper Cancer Institute. "They feel that it's very simple to use, that it's not overwhelming, and that it recognizes that a 4-year-old needs to be approached differently, and how he or she responds is going to be different from a 10-year-old or a 16-year-old."
Each chapter offers advice on what to say, what to do and what to observe for each age group. "Do not overreact when your preteen says she doesn't care about the cancer or blurts out something unkind or hurtful," advises the "Breaking the News" chapter in the section for ages 10-13. "Cook together, if you are able," suggests the chapter for parents of children ages 3-5.
Carlson included the books she referenced in an "Ideas and Resources" section. She particularly loved an anecdote she came across about a father whose wife had cancer. "His son was very angry, and the two of them threw ice cubes in the bath together. I thought, 'What a great idea,'" she says.
The book is available throughout the Allina Hospitals & Clinics system, of which Virginia Piper Cancer Institute is a part, and soon will be in PDF format on Allina's website, so anyone can access it.
Carlson says she not only hears from parents wanting advice on how to talk to their kids, but also from patients "who aren't telling their kids about their cancer. They don't want them stressed. Of course, children always know what's going on. They sense it.
"I was looking for a way to help people begin the conversation and give them some words to say. I think kids want to know, and they want to know the truth."