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Creating a safe place for kids

Author: Joyce Kirkpatrick

Safe. It’s an important word and a concept with special significance for a child whose parent has been diagnosed with cancer. That news transforms everything: not only must families launch a search for answers about treatment and survivorship but they must also face the many tough questions and the natural fear about the future that children placed in this situation express. Suddenly, just feeling safe, if only for short periods of time, seems a major challenge.

About three and a half years ago, Teri Jennings, RN, OCN, director of clinical services at Cancer Treatment Centers of America® (CTCA) in Tulsa, Oklahoma, noticed children crying in a family break room in the treatment center. “Safe” did not seem to be what these kids, separated from their mother who was undergoing treatment, were feeling.

At the time Jennings responded by searching for things to help distract the children and ease their anxiety; later the image of them in that family room would not leave her mind. Soon thereafter she discussed her experience with Lindsay Rehm, RN, OCN, education specialist; Margie Taylor, MSW, social worker; and several other clinicians at CTCA in Tulsa and posed the question: “How can we do more to help children cope with a parent’s illness and their own fears?” Jennings’s question—and the discussion that would ultimately spur the creation of programming for children of cancer patients at CTCA—is one that cancer treatment centers are increasingly trying to answer as they work to help families of cancer patients.

Addressing a growing need

Meeting the needs of children whose parents have been diagnosed with cancer is a growing concern. According to the American Cancer Society’s annual report, Cancer Statistics, 2012, there will be 1,638,910 new cases of cancer this year; and a study conducted by the National Cancer Institute reports that 22.4 percent (more than 367,000) of these cases will occur in individuals of childbearing and parenting years.

Additional statistics released by the National Institutes of Health reveal that an estimated 2.85 million US children under 18 are currently living with a parent who has been diagnosed with cancer. Researchers estimate that nearly 562,000 of these children are living with a parent who is in the early phases of cancer treatment and recovery.

Families and children in this affected population experience a variety of challenges, ranging from emotional distress to practical concerns like finding appropriate childcare. Across the board, these families confront questions about how to discuss a parent’s diagnosis and how to manage the impact on the family. Increasingly, treatment centers and hospitals are asking how they can best serve these kids and families, an issue made complex by the diversity of family dynamics, the fact that children in the same family may react differently to the experience, and the challenge of creating resources appropriate for children at various ages and stages of social and emotional development.

Despite the challenges, many treatment centers, hospitals, and independent organizations are recognizing this growing need and are designing programs not only to entertain and care for these children but also to help them understand the treatments their parents are receiving.

Why are these resources for children so important? Rehm and Taylor say that the impact of a parent’s diagnosis on children is significant and can result in emotional, behavioral, and social challenges and may even create physical symptoms—all of which can vary depending on the child’s age and gender.

Creating solutions

At CTCA the process of developing a program that would best serve the needs of children evolved over time. “We began our efforts to help address this issue by introducing solutions slowly,” Rehm says. “First we provided younger children with activities that would fit in backpacks. We chose items such as finger puppets and books—things that would not be intrusive to others—and placed them in colorful, lime-green, drawstring backpacks that the kids could take with them. Those backpacks are still a big hit. Then we started adding books to the patient library—books that kids can borrow and enjoy.”

That simple beginning soon led to more discussions by the CTCA team and eventually to the search for a comprehensive strategy or program that would address more of the children’s needs.

“We saw a real need to help teens as well as young children,” Taylor says, “and we found what we were looking for with the CLIMB program.” According to Taylor, the CLIMB program, created in 2001 in Denver, Colorado, by Peter Van Dernoot, BS, founder of the Children’s Treehouse Foundation and author of Helping Your Children Cope with Your Cancer: A Guide for Parents and Families, is a “hospital-based, cancer-focused, psychosocial intervention training program dedicated to improving the emotional health of children whose parents have cancer. CLIMB activities include forms of art therapy such as mask decorating and group processing.” CLIMB is an acronym for Children’s Lives Include Moments of Bravery. The Children’s Treehouse Foundation provides professional education for staff at hospitals and treatment centers and group support programming.

In 2010 Rehm and Taylor underwent extensive program facilitation training under the direction of Sue Heiney, PhD, RN, of the Children’s Treehouse Foundation and then brought the CLIMB program to CTCA in Tulsa, where they modified it to suit their needs. “We adapted the program for children ages five to 12; then we added a different program for teens about cancer and a parent’s diagnosis,” Rehm says, “so it just makes sense to tailor the program a little differently for them.” Ultimately, the program was expanded, and it now serves children and teens ages five to 18, who are divided into two separate groups: one for younger kids and one for teens.

The CLIMB curriculum includes a lot of opportunities for kids of all ages to discuss their feelings in age-appropriate ways. “We talk with the teens, for example, about all the emotions they will have—that as a teenager they are naturally happy because life is exciting and they have friends and fun activities but that the discovery of a parent’s illness can create the emotions of confusion, fear, and anger,” Taylor says. “We discuss that all of these emotions come up at one time or another, and sometimes they all come up at the very same time. We explain that it’s okay. You can almost see them breathe easier when we explain this and they learn that they are not the only ones experiencing those emotions.”

All of the activities and discussions that occur as part of the programming are focused on helping the kids work through their emotions, Taylor says, and to offer them a chance to build community with other kids. “CLIMB activities provide a chance for them to be with other kids who are going through the same thing. The teens especially end up exchanging phone numbers and Facebook information, and several of them have taken on the role of mentor to others in the classes. One thing we stress to all of the kids is that it is important that they have somebody they can go to.”

New patients with children at CTCA generally learn about the CLIMB program from a nurse navigator. Without exception the information is welcome news, especially to parents who are uncertain about how to talk about cancer with their children. “CLIMB is a safe place to share,” Taylor says. “The kids can talk about anything there and know that it’s okay. That aspect of the program is something we often hear the kids say is what they appreciate about the program the most.”

Welcome relief

Programs such as CLIMB are a welcome relief not only for the young participants but also for their parents, who often struggle with what to tell their minor children about their own or a loved one’s diagnosis and treatment. This worry is added stress for parents already experiencing anxiety about the transformative impact of a diagnosis on their parenting activities, the family’s finances, and the future well-being of their children.

Perhaps the greatest benefit of these programs is the sense of security they offer kids by providing a place where these young members of the family can express their feelings without being afraid that they will ask an ill parent the “wrong” question or burden their families— a place where worried, bewildered, and sometimes frightened children can simply feel safe.

Sources

Cancer Facts & Figures 2012. American Cancer Society website. Available at: http://www.cancer.org/ Research/CancerFactsFigures/CancerFactsFigures/cancer-facts-figures-2012. Accessed May 23, 2012.

Helping Children Cope When a Family Member Has Cancer. CancerCare website. Available at: http:// media.cancercare.org/publications/original/22-ccc_helping_children.pdf. Accessed May 23, 2012.

Hutchison C, Allen J. “Parents with Cancer: Millions of Patients Juggle Chemotherapy and Childrearing.” ABC News website, June 28, 2010. Available at: http://abcnews.go.com/ Health/MindMoodNews/parents-cancer-million-parents-young-children-cancer-survivors/ story?id=11013334#.T71QbUWvJ8E. Accessed May 23, 2012.

Langlie Lesnik, C. “When a Parent Has Cancer: What to Tell the Kids.” Everyday Health Community website. Available at: http://www.everydayhealth.com/blogs/against-all-odds-thoughts-of-an-appendixcancer- survivor/when-a-parent-has-cancer-what-to-tell-the-kids. Accessed May 23, 2012.

Rauch PK, Muriel AC, Cassem NH. Parents with cancer: who’s looking after the children? Journal of Clinical Oncology. 2003;21(9 Suppl):117s-121s.

Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population-based estimate of the number of US cancer survivors with their minor children. Cancer. 2010;116(18); 4395- 401. doi: 10.1002/cncr.25368.

When Your Parent Has Cancer: A Guide for Teens. National Cancer Institute website. Available at: http://www.cancer.gov/cancertopics/coping/when-your-parent-has-cancer. Accessed May 23, 2012.

Resources for Kids and Families

Listed below are several national programs designed to help children who are coping with cancer of a family member.

CancerCare provides free professional support services to anyone affected by cancer: patients, caregivers, children, loved ones, and the bereaved.
cancercare.org
(800) 813-HOPE [800-813-4673]

Cancer Support Community provides parents and children with access to free social and emotional support, including Group Loop, an online community designed to address the needs of teens 13 to 19 whose lives are affected by cancer.
cancersupportcommunity.org
(888) 793-9355 or (202) 659-9709

CLIMB, a program of the Children’s Treehouse Foundation, works to ensure that every child whose parent is diagnosed with cancer is given the tools and emotional support to cope. The program helps normalize feelings of sadness, anxiety, fear, and anger of children whose parent has cancer, while stimulating improved communication between children and parents.
childrenstreehousefdn.org (includes lists of support groups for children by state)
(303) 322-1202

Kids Konnected offers programs and services for children with a parent diagnosed with cancer. Eleven-year-old Jon Wagner-Holtz established Kids Konnected in 1993 after his mother was diagnosed with breast cancer. Jon felt alone with his feelings, his friends didn’t understand, and he really wanted to talk to other kids who might be going through the same experience. “Kids helping kids is what we’re all about,” he says. “Because of our ‘Konnection,’ you don’t have to be alone anymore.”
kidskonnected.org
(949) 582-5443

KidsCope helps children cope with changes in the family when a parent has cancer. Educational materials include Kemo Shark, a comic book to help children understand the psychological and physiological changes in a parent undergoing chemotherapy, and a video, My Mom Has Breast Cancer, which includes interviews with children and mothers who have successfully weathered the experience.
kidscope.org

SuperSibs! is a nonprofit organization ensuring that siblings of children with cancer are supported, honored, and recognized to help them redefine the cancer experience to face the future with strength, courage, and hope. SuperSibs! does what many overwhelmed families cannot, by focusing on the well siblings who are feeling isolated and afraid.
supersibs.org
(888) 417-4704 or (847) 462-4742

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