By Barbara Jones, PhD, Jessica Parker-Raley, MA, and Elizabeth C. Pomeroy, PhD, LCSW
|Adolescent Cancer Survivors Face Physical and Psychological Challenges|
|Adolescent Cancer Suvivors and Substance Use Research Findings|
|Implications for Social Workers|
The survival rates for children with cancer have steadily increased due to life-extending therapies (Cox, McLaughlin, Steen, & Hudson, 2006; Friedman, Freyer, & Levitt, 2006). Reports indicate that 80 percent of children diagnosed with various forms of cancer in the United States today are expected to survive their disease and treatment (Greenlee, Murray, Bolden, & Wingo, 2000).
With continued funding and new treatment advances, members of CureSearch, the world’s largest childhood cancer research organization, predict that the survival rate can be raised to 85 percent in the near future (CureSearch, 2007). There are currently 270,000 survivors of childhood cancers in the United States (National Cancer Institute, 2004); by 2010 an estimated one in every 640 young adults in the U.S. between the ages of 20-39 will be a childhood cancer survivor (Hewitt, Weiner, & Simone, 2003).
Adolescence is a unique developmental period where self-image is extremely important, and it is especially difficult for teens battling cancer, whose symptoms and treatment prevent them from experiencing a normal adolescence (Forsbach & Thompson, 2003).
Adolescents who survive cancer often experience physical and psychological late effects post treatment. Life-extending therapies which contribute to high survival rates are associated with multiple physical effects such as cardiotoxicity, additional malignancies, organ damage, neurocognitive and psychological impairment, osteoporosis, diabetes, and obesity (Bhatia &e; Sklar, 2002; Glover et al., 2003; Hoffmeister, Storer, & Sanders, 2004).
In addition to physical effects, adolescent cancer survivors may experience psychological effects such as depression, anxiety, poor peer relations, low school performance, loneliness, post-traumatic stress disorder (Stuber, 2006), and obsessive worrying (Hewitt et al, 2004; NCI, 2004) which contribute to low self-esteem and a poor outlook on life (Zebrack & Chesler, 2001).
Recent research has shown that the physical and psychological effects of cancer treatments are predictors of substance use among adolescent survivors (Cox et al., 2006). In addition, adolescent cancer survivors are smoking and drinking at comparable rates with healthy adolescents (Hollen & Hobbie, 2001). Substance use is a problem for all adolescents; however, adolescent cancer survivors are more prone to health problems associated with such risky behavior.
Substance use can greatly compromise the health of childhood cancer survivors. Adolescent cancer survivors who engage in substance use increase the risks of physical and psychological late effects due to cancer treatments (Cox et al., 2006; Hollen & Hobbie, 2001). The Children’s Oncology Group (COG) released long-term follow up guidelines for childhood cancer survivors that suggest alcohol use could increase the occurrences of secondary cancers for childhood cancer survivors (CureSearch, 2007).
Studies investigating adolescent cancer survivors and substance use have only just begun. The few research studies that have investigated adolescent survivors’ risky behaviors focus solely on physical and psychological effects as predictors of substance use. Researchers should continue to explore why adolescent cancer survivors choose to use substances, and what factors influence their decision-making processes. Adolescent survivors may try to adapt their behaviors to match the actions of their “healthy” peers. In other words, if their “healthy” peers are engaging in substance use, they may follow suit, to fit in with their desired social group. Therefore, the difficult process of readjusting to “normal adolescence” post-treatment may be one factor that causes adolescent survivors to engage in risky behavior.
A recent qualitative exploratory study of 12 adolescent cancer survivors conducted at Dell Children’s Medical Center of Central Texas resulted in four overarching themes that describe their experiences: finding meaning, identity paradox, need to belong, and substance use. Further analysis revealed nine secondary themes related to adolescent cancer survivors’ adjustment: appreciation, personal growth, survivor identity, cancer identity, isolation, importance of family, friends, and health care providers, lack of support as a survivor, social support for substance abuse, and awareness of risk (Jones et al., 2008).
According to the results of in-depth interviews completed in this study, adolescent cancer survivors experience a different life journey than their healthy peers for many reasons. Adolescent cancer survivors are faced with mortality earlier and more frequently than their healthy peers. It was evident from the interview responses that many adolescent cancer survivors have lost very close friends with whom they have undergone treatment.
Dealing with this type of loss can potentially increase their levels of distress and put them at further risk for substance use and abuse. In fact, some adolescents may experience a deep sense of survivor’s guilt. In addition, after lengthy periods of time when these adolescents must endure painful treatment protocols and missed opportunities for normal adolescence, they may rebel post treatment by engaging in substance use and other risky behaviors.
Since adolescence is a period for normal experimentation and the development of one’s own identity, teen cancer survivors may repeat the tasks of adolescence at a later age after completing treatment. This risky behavior can be quite alarming to their family, friends, and health care providers given the gravity of their recent illness and the potential for harm to their future health.
Social workers need to be aware of the risks and reasons that adolescents who have survived cancer may engage in substance use, abuse, and other risky behaviors. Practitioners need to conduct a comprehensive psychosocial assessment of the social and development needs of these young survivors. They need to be highly vigilant of the potential for substance use behaviors that may not fit the expectations of these adolescents who often appear more mature than their peers.
On one hand, these survivors have the wisdom and insight that comes from facing a life threatening illness. However, on the other hand, some of their development may have been halted by treatment and their interrupted adolescence. Social workers can also help families understand the unique dilemma faced by cancer-surviving adolescents.
All adolescent cancer survivors need to have a health care practitioner or team trained in the psychological and physical late effects of cancer. Fortunately, childhood cancer survivor clinics are becoming more and more available throughout the country. If a practitioner working with a cancer surviving teen identifies a problem with substance abuse (for example, in a school setting), an appropriate referral to an expert in substance abuse counseling should be made. In addition, practitioners should educate parents as to the signs and symptoms of substance use and risky behaviors in this population.
Social workers can engage adolescent cancer survivors in self-reflection about their cancer experience and the meaning they attach to their survival. Adolescent survivors can be involved in creative expressions, group support, and activities that build self-esteem. Connecting survivors with peers who have gone through cancer treatment can be done in person or online. Survivors can be encouraged to write or blog about their lives throughout this experience and find meaningful support. Ultimately, adolescent cancer survivors want to have a “normal” adolescence and young adulthood. Social workers can facilitate this transition by encouraging them to engage in life enhancing rather than life-depleting behavior sand activities.
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Cox, C. L., McLaughlin, R. A., Steen, B. D., & Hudson, M. M. (2006). Predicting and modifying substance use in childhood cancer survivors: Application of a conceptual model. Oncology Nursing Forum, 33, 51-60.
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Jones, B.L., Parker-Raley, J. & Barczyk, A. (2008). Adolescent cancer survivors: Meaning, identity and risk of substance abuse. Austin, TX: Dell Children’s Medical Center of Central Texas.
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Zebrack, B. J., & Chesler, M. (2001). Health-related worries, self-image, and life outlooks of long-term survivors of childhood cancer. Health and Social Work, 26, 245-256.
Jessica Parker-Raley, MA is a staff member of the Pan Am School of Communications at the University of Texas in Edinburgh. She may be reached at P2575@mail.utexas.edu.
Dr. Pomeroy is a co-director of The Institute for Grief, Loss and Family Survival and a professor in the School of Social Work at the University of Texas at Austin. She is a member of ATOD Specialty Practice Section Committee. She may be reached at email@example.com.