Society for Social Work and Research

Sixteenth Annual Conference Research That Makes A Difference: Advancing Practice and Shaping Public Policy
11-15 January 2012 I Grand Hyatt Washington I Washington, DC

86P Adolescent Cancer Survivors: Identity Paradox and the Need to Belong

Saturday, January 14, 2012
Independence F - I (Grand Hyatt Washington)
* noted as presenting author
Barbara L. Jones, PhD, MSW, Associate Professor, University of Texas at Austin, Austin, TX
Background and Purpose: Childhood cancer survival rates have increased to 80% in the US over the past 30 years (ACS, 2010; Gloeckler Ries et al, 2003). There are currently 270,000 survivors of childhood cancer in the US, and it is estimated that one in every 640 young adults between the ages of 20 and 39 is a childhood can¬cer survivor (ACS, 2010; Gloeckler Ries et al, 2003; Thomas, et al, 2010). With advancements in childhood cancer treatments improving so rapidly, many survivors are entering adolescence and young adulthood. Little is understood about how these young people integrate their cancer experience into their developing identities. The purpose of this study was to understand the ways that adoles¬cent cancer survivors develop their identity, seek support, promote their health, and transition to survivorship post treatment.

Methods: Using a constant comparative analysis, this study focused on the experience of cancer survivorship through in-depth interviews with twelve adolescent/ young adult survivors between 12 and 20 years old. The participants had all received a cancer diagnosis before age 18, and were post treatment at the time of the study. The setting for data collection was The Dell Children's Medical Center of Central Texas. Three coders used constant comparative analysis to identify the salient themes from the data. All responses were transcribed and open coded by examin¬ing the participants' words, phrases, and sentences and then sorted and compared until data reached saturation (Padgett, 1998; Strauss & Corbin, 1994). This method¬ology was chosen because of the exploratory nature of the study.

Results: The data revealed three first-level codes—finding meaning, identity paradox, and need to belong—and seven second-level codes—appreciation; personal growth; survi¬vor identity; cancer identity; isolation; importance of family, friends, health care providers; and lack of support as a survivor. These adolescents experienced both risk and protective factors in the aftermath of their cancer. As they struggled to incorporate both their cancer and survivor experiences into their identities, they looked for ways to belong, attempted to find social sup¬port that promoted their health, and searched for meaning and positive benefits.

Conclusion and Implications: The results indicate that identify formation is challenged for adolescent cancer survivors because they are stuck between the cancer identity and the survivor identity. This identity paradox could be creating or exacerbating feelings of isolation and uncer¬tainty that can amplify their need to belong. Adolescent cancer survivors reported that the cancer experience removed them from experiencing a “normal” childhood/ adolescence. After treatment, they struggled to find meaning, identify positive benefits of the experi¬ence, and form an identity that integrated their cancer and survivor experience. Some survivors yearned to have a more “typical” adolescent experience and consequently engaged in risky health behaviors. This, combined with reduced physical activity and healthy behaviors, puts them at significant risk for ongoing health issues into adulthood (Jones, 2008; Reuben, 2004). Social workers should receive specific training in adolescent /young adult oncology so that they can best support these survivors as they face identity challenges and transition to adulthood.