KidsClub event at Cancer Wellness House in Salt Lake City.

Kids naturally have many questions and fears when cancer strikes a parent or another family member: “Did I cause my Mommy’s cancer?” “What’s going to happen?” “Will she live?” “Who’s going to take care of me?”

While bereavement programs for children whose parents have died are relatively common, programs for children living with cancer in the family are rare. Kid Support, Inc., a non-profit organization headquartered in Evanston, IL, is one.

The 12-week program for kids ages six to 13, which is conducted by two workshop-trained adult facilitators, addresses both mental health and social needs. These volunteers provide age-appropriate information about cancer, teach valuable coping skills and encourage kids to talk about their feelings and experiences. The program is free to participants.

Shared Experience

“A support group is such a good idea because if nothing else, kids know
they are sharing the same experience as other kids whose parents have cancer.
They see that other kids also are angry because they feel abandoned when all the focus is on the ill parent,” comments Kid Support founder Ann Speltz,
PhD, educator and author of The Year My Mother Was Bald.

Speltz founded Kid Support in 2000, several years after her own breast cancer diagnosis in 1997. At the time, Speltz couldn’t find a program to help her daughter Amelia, then aged 7, cope with her mother’s diagnosis

Christine Wollner says that a Kid Support group held at Little Company of
Mary Hospital and Health Centers in Evergreen Park, IL, greatly helped her
sons, Matthew and Joseph, then ages 11 and 6, prepare for their grandfather’s
passing in January 2002.

“I’m a single mom and my sons were extremely close to their grandfather,
who was a primary caregiver,” she comments. “When I came across a Kid Support
brochure in the oncologist’s office I felt I had found an oasis.

“Children tend to feel that they are the only kids with a parent or grandparent who has cancer,” she adds. “I tried to prepare them as much as I could, but I felt that they also needed to be with other kids.”

A Real Need

Among the problems a child may experience when a parent or caregiver has cancer: health problems, anxiety, loneliness, difficulty with family relationships, friendships, and school.

A cancer diagnosis is a family crisis, one that can put children in the shadows as adults deal with their own fears, difficult medical decisions, emotional and financial stress. “When we get wrapped up in the illness of the loved one, we can forget that there is another little person who needs to sort out a lot of feelings,” comments Wollner.

Among other things, such children have a genuine need for reassurance, support and factual information about cancer and its treatment. Each Kid Support group is limited to ten participants, so kids get lots of personal attention.

Serious Fun

Games, stories, poems, art activities and cartoons are used to help create an environment where kids feel safe to ask questions, express how they feel and not feel isolated and alone.

“It has to be fun -- what else is going to motivate a child to come to a Kid Support group?” asks Speltz. “However, all activities are carefully designed and chosen for a particular objective. For example, we read and discuss a poem called ‘Magic Carpet’ to help introduce the idea of creating mental images before doing deep breathing exercises and guided imagery activity.

Learn more about each of the 12 sessions in the Kid Support program

“When we teach the unit on how to be assertive, we use cartoons to differentiate between passive, assertive and aggressive behaviors,” she adds.

At the Cancer Wellness House in Salt Lake City, Utah, the Kid Support program meets in a children’s studio filled with toys. “Our Kid Support program is commonly known as KidsClub,” says excutive director Jill Angerbauer. “We’re looking forward to completing a children’s cottage with a garden in the backyard.”

Program Fundamentals

Kid Support groups reassure kids that they didn't cause their parents' cancer and address other common misconceptions. "A child may think, 'I got real mad at my Mom, so she got cancer,' " says Speltz. "It's a very common response and part of a child's magical thinking.

"Another fear is that cancer is contagious and that they or the other healthy parent may get cancer," says Speltz.

Kids also get age-appropriate information about cancer and its treatment. "Often kids' fears are much worse that actual facts," says Speltz. "For example when parent's hair falls out during chemotherapy treatments, the child may believe the parent is getting worse if the child doesn't understand that those are common side effects."

"KidsClub has a full-day retreat at a hospital to teach kids about cancer treatments," says Angerbauer. "Kids lay on the MRI, sit in the chemotherapy room and ask questions," she adds. "They love it and the doctors love it."

In their support groups, kids are encouraged to discuss what they are feeling and experiencing.

"Each boy dealt with his grandfather's cancer and passing in a completely
different way," says Wollner. "My eldest son Matthew had more denial and
tremendous anger. Joseph was more simplistic in his thinking and comfortable talking
about his grandfather.

"They both needed and got different things from their Kid Support group," she comments.

Kids also learn to use deep breathing and guided imagery techniques to relax. "Our guided imagery sessions also are very helpful," comments Linda Courts, R.N., coordinator of the program at Little Company of Mary Hospital. "Kids pick a pebble to use during visualizations and they can hold that stone whenever they feel anxious. At the program's end, we give them each a stone with an angel on it to put in their pockets.

"We also make a memory book for every child. Everyone writes down what he or she remembers best about the other children in the group, such as 'I liked your laugh,' " she says. "Every child is recognized and has something to keep."

Family Support

The program also reaches out to parents, with a 90-minute orientation session that provides tips on how to communicate about cancer within the family.

"The orientation program can be a very emotional experience. For many it's the first time they've met other parents who have had to tell their child they have cancer," says Angerbauer. "Parents ask how best to talk to their kids and how open they should be with different ages. There isn’t one right answer.

“I told my daughter, then age seven, that I had a tumor in my breast that the doctor was going to surgically cut out. I drew a picture of a breast and a tumor,” says Speltz. “At each treatment stage I explained what would happen in very concrete terms.

“I chose not to use the word ‘cancer’ at the time of diagnosis, but waited until after the surgery,” she adds. “I wouldn’t recommend this for everyone, but it worked for us.”

Help Kids In Your Community

Learn about the Kid Support mission

A long-range goal of Kid Support is to expand its reach nationwide and currently operates in the Cancer Wellness House, Salt Lake City, Utah and Little Company of Mary Hospital, Evergreen Park, Il.

Learn how to become a Kid Support facilitator

But the organization offers free training and materials to those interested in becoming support group facilitators, and encourages the establishment of new programs in settings such as schools, hospitals, community centers, and religious organizations.

Kid Support gets its funding from individual donors and grants from foundations and corporations such as the Draper and Kramer Mortgage Corp. and the Elizabeth Morse Genius Charitable Trust, among others. “Our annual budget has never exceeded $14,000,” says Speltz. “However, this year’s budget reflects a push to acquire funding that would allow Kid Support to hire a full-time administrative assistant and a part-time trainer.”

“Ours is truly unique because it’s the only program with an extensive
curriculum written in a procedures manual based on research and consultation of
top professionals,” says Speltz. “Volunteers go through a10-hour training
course with documentation and a handbook. They follow very detailed instructions
when leading a Kid Support group. That’s what makes it possible to recruit
people who aren’t professional counselors.”

“Some cities don’t have anything like this for kids. One parent in Nevada
said she’d fly her kids in,” says Angerbauer. “This is a much-needed
service.”

Letitia L. Star is a freelance writer based in Evanston, IL.

Resources

• Learn more about Kid Support, including parent resource information.
• The Integrative Therapies newsletter (under Publications) has
  information on the Kid Support group (on the bottom of page 2) at Little Company of
  Mary Hospital
• For more information on the KidsClub of the Cancer Wellness House.
• American Cancer Society’s tips on how to help children deal with a
  family member’s cancer diagnosis.