Having cancer is at odds with normal childhood development. The illusion of immortality is crushed and young minds must face issues most come to terms with in mature adulthood.
What does it mean to have survived cancer? Who in my life means something to me? Who do I want to be?
These are questions that children who have survived cancer may find themselves asking. While their peers are thinking about shopping and swapping video games, childhood cancer survivors are often preoccupied with the meaning of life. In some respects, they are premature adults who present a new set of challenges to social workers.
Barbara L. Jones, PhD, MSW, an assistant professor and a codirector of the Institute for Grief, Loss, and Family Survival in the School of Social Work at The University of Texas at Austin, as well as the president of the Association of Pediatric Oncology Social Workers, has been researching the psychosocial consequences of surviving childhood cancer. She has found that “making meaning” is a common outcome. Since surviving childhood cancer is an identity-changing experience. “Having faith in getting through something difficult, such as a having a life-threatening illness at a difficult age, changes who you are and how you approach the world,” says Jones.
“To face the possibility of death at a young age forces childhood cancer survivors to not only deal with issues such as who they are but also whom they care about, what it means to fight, and what it means to survive. They do that before the developmental stages predict that they should. That’s what I mean by ‘making meaning,’” she explains.
In a study of Latino childhood cancer survivors, Jones found that cancer changed their lives—often for the better. “They were on a difficult path [and] a frightening cancer diagnosis caused them to stop and look at what they value, what is important. The kinds of things they thought about were the importance of their family and friends, who stands by you, what it means to be a good friend, what it means to be with someone, the value of life, appreciating the little things as well as life, and gratitude for others. They found meaning and their lives changed by facing a life-changing illness,” she explains.
Gift of Gratitude
The experience of gratitude as an outcome of surviving childhood cancer has profound implications. Robert A. Emmons, PhD, a psychology professor at the University of California, Davis, believes that gratitude may be a “magic ingredient” in physical and psychological well-being. A pioneer in the research on gratitude and one of the leading scholars in positive psychology, Emmons’ new book, Thanks: How the New Science of Gratitude Can Make You Happier, explains that gratitude takes us outside ourselves so we can see how we are part of a larger, intricate network of sustaining relationships. Gratitude may be just the gift that a childhood cancer survivor needs to lead a happy and healthy life.
It is not a stretch to think that gratitude may be a protective factor for childhood cancer survivors when you consider that gratitude has been linked to healthy hearts. University of Connecticut psychologist Glen Affleck, PhD, found that cardiac patients who blamed their heart attacks on others were more likely to suffer another heart attack within the next eight years. On the other hand, cardiac patients who recognized the benefits of an initial heart attack, including a greater appreciation of life, had a reduced risk for a subsequent attack.
A University of Pittsburgh study of heart transplant patients found thankfulness and appreciation were positively related to improved physical and mental health at one year posttransplant. Thankfulness was also related to greater compliance with medical regimens and fewer difficulties with diet and medications.
A manifestation of gratitude is a desire to give back. Maria Bracamonte, MSW, a pediatric oncology social worker at the University of California, San Francisco (UCSF), has found that many of the young people who participate in the Survivors Clinic at UCSF have an urge to give back. “We see a lot of patients who have developed their strengths and resilience from managing their illness. They come into our clinic, and they want to find ways to give back to other patients and families. We have had patients who wanted to be a mentor to a patient who is going through treatment or wanted to be a camp counselor at a camp for pediatric oncology patients,” she says.
Jones has seen this, too. “A lot of survivors become healthcare professionals. They decide during their cancer experience that they want to help other kids. Often, they have been very inspired by a doctor or a social worker who really cared for them, provided for them, and gave them an opportunity to grow,” she explains.
Finding meaning from the experience of surviving childhood cancer can be a double-edged sword. Being wise beyond your years may have its benefits, but it also makes socialization with a peer group uncomfortable. The disconnect that childhood cancer survivors feel from their peers is one of the primary psychosocial issues they must face.
The experience of surviving childhood cancer is often at odds with normal childhood development. “Adolescence is a time of immortality, a time of growth. Adolescents are forming their identities and developing possible selves. They are trying to become the biggest, most expansive person that they can as they try on these different ways of being in the world. There is a real paradox with this developmental phase when the adolescent experiences cancer,” Jones explains. Just when the adolescent is experiencing immortality, his or her life is threatened by cancer. When it is natural to rely on peers, cancer patients have to repress that desire because they are hospitalized and forced to depend on their families.
“In many ways, they are older, having been changed by this experience,” says Jones. “They relate with adults that are much older than they are, and they understand concepts that their peers don’t. They are thinking about life differently than their peers.
“At the same time, they feel cancer cheated them from their adolescent experience. They missed the experimentation phase, whether it’s unhealthy or healthy. To be pulled out of your social network at that time is very difficult and can create some of the dilemma that occurs afterwards. They feel both younger and older than their peers, and that makes it hard for them to feel comfortable reentering a social network,” she adds.
Bracamonte hears the same thing. “Part of it depends on when the patient was diagnosed. I see patients who struggle more because they were diagnosed later in adolescence or were diagnosed when they were in college. They are getting treatment for cancer when they should be off at college or graduating from high school,” she says.
Childhood Cancer Survivors
Today, most children with cancer are surviving. Advances in treatment since the ’70s and ‘80s have dramatically improved the prognosis. Of the more than 12,000 children diagnosed with cancer each year, about 80% will be long-term survivors. With numbers that large, many social workers will have a childhood cancer survivor in their caseload. “These children have psychological and physiological needs that continue long after the cancer treatment ends,” says Jones.
Studies of childhood cancer survivors have found that major psychiatric disorders among them are relatively rare. More typical are adjustment difficulties, such as increased health concerns, somatic complaints, and academic problems. Marriage may also be delayed (Zeltzer, 1993).
A minority of childhood cancer survivors experience extreme symptoms of depression and psychosocial distress. Risk factors for a poor psychosocial outcome include being female, being of low socioeconomic status, and undergoing treatment with intensive chemotherapy (Von der Weid, 2008).
Back to Life
After a crisis like childhood cancer, life is supposed to go back to normal, but life is never going to be the same again for the child or the family. Social workers have an important role to play in supporting the children and their families adjusting to a changed lifestyle.
At the survivors clinic where Bracamonte works, celebration is an element of getting back to life. “We celebrate what they have gone through and what it means in their lives. Some of these patients don’t have a lot of memories of their treatment—depending on their age—but the family has been greatly impacted and has needed support over the course of their treatment. Whereas other patients remember certain things about treatment, sometimes they have a lot of fears around their cancer coming back,” she says.
Helping childhood cancer survivors return to school is another aspect of Bracamonte’s work, which can range from getting neuropsychological testing to tutoring or getting an individualized education plan in place. Specialized testing is not easily covered by insurance, and so patients often need help. It is not uncommon for childhood cancer survivors, depending on their treatment, to have issues with memory and concentration. For that reason, testing is particularly important.
The survivor who has been out of school for a long time must often deal with social issues when integrating back into the classroom. Bracamonte says it is important to explain to school administrators what the child has endured. “Sometimes these kids come back and they look perfectly normal; it is helpful for the school to understand what the child has been through in treatment and what cognitive effects they may have. The educational impact of childhood cancer depends on the type of cancer they had, the type of treatment they had, and the age of their diagnosis,” she says.
Patricia Fobair, LCSW, a recently retired social worker and a cancer survivor, was on the cancer scene in the ‘60s and has been supporting survivors all along. The magazine she developed and published at Stanford University, Surviving!, just completed a 20-year run. She advocates good nutrition, exercise, and refraining from alcohol, a difficult regimen for adolescents. “I learned it when I was a patient and had to give up wine. Alcohol is not a friend of people going through cancer. Recurrence rates are higher for people who drink,” she explains.
Fobair ran a support group for cancer survivors at the Cancer Center of Stanford University Hospital. “Everyone needs to talk about the experience. Sometimes, it is important to talk to the young people and their families separately, especially when the young person is trying to leave home and get away from Mom and Dad,” she says. Fobair has also found that sometimes parents infantilize their children. “Whatever the normal separation device was, it was severely challenged by their cancer treatment,” she says.
Support for Social Workers
Karyn Walsh, MSW, ACSW, LCSW, a National Association of Social Workers senior policy associate, started her career as a pediatric oncology social worker and knows firsthand the challenges of supporting childhood cancer survivors and their families. “I still remember when I was 25 years old the family who brought in their kicking and screaming 6-year-old daughter who had just been diagnosed with a common childhood cancer. I watched them go through being a strong, four-member nuclear family to being, as everybody is, devastated by a childhood cancer experience. The child underwent chemotherapy, she lost a body part, and at one point, they thought she was going to die and I had to work with the family on funeral arrangements. She survived and went on to get a bone marrow transplant from siblings and to grow back her long beautiful hair. It is something you never forget,” she explains.
Walsh recommends that social workers have strong support system to cope with such challenging emotional situations. She suggests that they seek continuing education and information to enhance their skills. Good supervision is important, as are opportunities to network with other pediatric oncology social workers about different ideas, as well as for peer support. “When I was a pediatric oncology social worker and able to find someone else that could really identify with what I did, that was the source of incredible support,” she says.
More on the Horizon
There are more than 270,000 children in the United States who have survived childhood cancer. By 2010, one person in 250 will be a childhood cancer survivor. According to Jones, “I think that the survivor population is a really important group to pay attention to. We are getting better at curing childhood cancer, and the number of survivors is going up. Now we have to figure out how to catch up with the survivors so that they get what they need.”
Dr. Lynn K. Jones is a Certified Personal and Executive Coach based in Santa Barbara, California and a sought after coach and consultant for organizations and individuals across the US. Her doctoral work completed at the Wurzweiler School of Social Work, Yeshiva University concerned organizational culture; she coaches, consults and trains organizations on what they need to do to create organizational cultures that are aligned with their vision and values using a process of Appreciative Inquiry. She coaches individuals on achieving their reflected best selves. An MSW@USC faculty member, Dr. Lynn K. Jones, MSW, DSW, CSWM, teaches Human Behavior and Social Environment.
Von der Weid, N. X. (2008). Adult life after surviving lymphoma in childhood. Support Care Cancer, 16(4) 339-345.
Zeltzer, L. K. (1993). Cancer in adolescents and young adults psychosocial aspects. Long-term survivors. Cancer, 71(10 Suppl), 3463-3468.
Center for Health Promotion and Disease Prevention Research in Underserved Populations
This center is funded for five years by the National Institute of Nursing Research/National Institutes of Health to foster health promotion and disease prevention research endeavors in underserved populations.
Association of Pediatric Oncology Social Workers (APOSW)
The mission of the APOSW is to advance practice, extend knowledge, and influence pediatric oncology policies and programs to enhance the emotional and physical well-being of children diagnosed with cancer and their families.
The CureSearch resource directory includes local, national, and international organizations that offer resources for helping community members, parents, and children with childhood cancer.
Initiative for Pediatric Palliative Care (IPPC)
The IPPC is an education and a quality improvement effort aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC’s comprehensive, interdisciplinary curriculum addresses knowledge, attitudes, and skills that healthcare professionals need to better serve children and families.
A Lion in the House
This documentary follows five children who fight cancer with the help of their caregivers.
National Coalition for Cancer Survivorship (NCCS)
The NCCS is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. The NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care. Patient education is also a priority.
Cancer Advocacy Now!
get involved with www.canceradvocacy.org
Cancer Advocacy Now! is a legislative advocacy network organized by the NCCS that engages constituents across the country in federal cancer-related issues.
Cancer Survival Toolbox
The Cancer Survival Toolbox is a free, self-learning audio program developed by the NCCS in collaboration with leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness. On this site, you can read or listen to the toolbox in English and Spanish or download the files to read or listen later. Chinese transcripts are also available.