What does it mean to be who I am? What does it mean to have survived cancer? Who means something to me in my life? Who do I want to be? These are questions that children who have survived cancer find themselves asking. While their peers are thinking about shopping and swapping video games, childhood cancer survivors are 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, Ph.D. M.S.W., Assistant Professor and Co-Director of the Institute for Grief, Loss, and Family Survival in the School of Social Work at The University of Texas at Austin, and 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. Surviving childhood cancer is an identity changing experience. “Having faith in 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 such issues 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 meaning making,” explains Jones. 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; 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; gratitude for others. They found meaning and their lives changed by facing a life-changing illness.”
Gift of Gratitude
The experience of gratitude as an outcome of surviving childhood cancer has profound implications. Robert A. Emmons, PhD, a professor of psychology 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 that we can see how we are part of a larger, intricate network of sustaining relationships. Gratitude may just be the gift the 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 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 benefits from an initial heart attack, including becoming more appreciative 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 post-transplant. Thankfulness was also related to greater compliance with medical regimens and to 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 University of California, San Francisco 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 in to 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.” Jones has seen this too. “A lot of survivors become health care 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 that really cared for them, provided for them, and gave them an opportunity to grow.”
Double Edged Sword
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 childhood cancer survivors feel from their peers is one of the primary psychosocial issues that they must face. The experience of surviving childhood cancer often is at odds with normal childhood development. Jones explains, “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.” Just when the adolescent is experiencing immortality, their 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,” suggests 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 its 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.” Brancamonte 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.”
Childhood Cancer Survivors
Today most children with cancer are surviving. Advances in treatment since the 1970’s and ’80’s have dramatically improved the prognosis. Of the 12,000 children diagnosed with cancer each year, about 80 percent 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 survivors of childhood cancer have found that major psychiatric disorders among childhood cancer survivors are relatively rare. More typical are adjustment difficulties, such as increased health concerns, somatic complaints and academic problems. Marriage may also be delayed (Zeltzer, L.K., 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, low socio-economic status and treatment with intensive chemotherapy (Von der Weid, N.X., 2008).
Back to Life
After a crisis with 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 back to life. At the Survivors Clinic where Bracamonte is a pediatric oncology social worker, 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.” Helping childhood cancer survivors get back to school is another aspect of Bracamonte’s work at the Survivors Clinic, which can range from getting neuropsychological testing, to tutoring or getting and Individualized Education Plan in place. Specialized testing is not easily covered by insurance and so childhood cancer survivors often need help with getting insurance coverage. 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 a long time must often deal with social issues 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.” Patricia Fobair, LCSW, recently retired and a cancer survivor herself was on the cancer scene in the ’60’s 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 children and 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.” 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.” Fobair has also found that sometimes parents infantilize their children. “Whatever the normal separation device was, it was severely challenged by their cancer treatment.’
Support for Social Workers
Karyn Walsh, MSW, LCSW is a Senior Policy Associate at NASW. Walsh started her social work career as a pediatric oncology social worker and knows first hand 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 six year old daughter that 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.” Walsh recommends that social workers have strong support to cope with such challenging emotional situations. She suggests that social workers get 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. “To have good support for themselves, that is really important. 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.”
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.” This should include help understanding the profound questions of identity, meaning and purpose that the survivors often face while they are still children.
Emmons, R. Thanks!: How the New Science of Gratitude Can Make You Happier. (2007). New York: Houghton Mifflin. Von der Weid, NX. (2008). Adult Life After Surviving Lymphoma in Childhood. Support Care Cancer, 16(4) 339-45. Zeltzer, L.K. (1993).Cancer in adolescents and young adults. Cancer, 71 (10 Suppl): 3463bb-8.
Resources 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 promote health promotion and disease prevention research endeavors in underserved populations. Association of Pediatric Oncology Social Workers The mission of APOSW is to advance practice, extend knowledge and influence pediatric oncology policies and programs in order to enhance the emotional and physical well being of children with cancer and their families. CureSearch The CureSearch searchable 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 The Initiative for Pediatric Palliative Care (IPPC)is both 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 health care professionals need in order to better serve children and families. A Lion in the House This documentary follows five children that fight cancer with the help of their caregivers.
The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. 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 for NCCS.
Cancer Advocacy Now!™
Cancer Advocacy Now!™, a legislative advocacy network organized by NCCS that engages constituents across the country in federal cancer-related issues.
Cancer Survival Toolkit
The Cancer Survival Toolbox is a free, self-learning audio program developed by 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.
Author: Dr. Lynn K. Jones
Certified Personal and Executive Coach
Your Mojo Maven
Dr. Lynn K. Jones is a Certified Personal and Executive Coach. Her doctoral work completed at the Wurzweiler School of Social Work, Yeshiva University concerned organizational culture; she coaches, consults and trains organizationson what they need to do to create organizational cultures that are aligned with their vision and values.