Adolescent survivors of childhood cancer are a growing population with unique needs as they face a combination of challenges associated with normal development and returning to life after treatment completion (Wakefield et al., 2010). One specific need identified in the research literature includes the effective delivery of transitional care and planning (Hewitt, Greenfield, & Stovall, 2005). It has been suggested that the provision of transition care and planning can help facilitate the shift from one phase of care to another and promote positive transition experiences (National Cancer Institute, 2008). The shift from off-treatment to post-treatment and school reintegration have been identified in the literature as significant transitions for adolescent survivors of childhood cancer (Cabat & Shafer, 2002; MacLean, Foley, Ruccione, & Sklar, 1996). However, limited research has been conducted to explore these transitions from the perspectives of adolescent survivors of childhood cancer.
An exploratory, qualitative study was conducted with eight adolescent survivors of childhood cancer between the ages of 14 and 17. A multiple case study research design was used to explore adolescent cancer survivors’ perceptions of these transition processes, challenges associated with these transitions, and their beliefs about what supports/services were or would be beneficial during these transitions. Data collected for analysis included questionnaires, transcribed interviews and follow-up meetings, direct observation, documents, and parent feedback. These data were analyzed using a combination of a template organizing style, immersion/crystallization (I/C) approach, and multiple case study strategies (Borkan, 1999; Crabtree & Miller, 1999, Stake, 2005; Yin, 2008).
Results indicated that adolescents perceived that change was occurring on some level during the shift from off-treatment to post-treatment and school reintegration but did not necessarily define this time as a “transition.” They defined these times in personalized terms that reflected more subtle changes in their lives. The focus was placed on returning to a sense of “normalcy” and capitalizing on opportunities to regain some control over one’s life. The improvement and/or absence of treatment residuals along with re-engagement in activities and roles served as signs, or indicators, that life was returning back to “normal” and provided feedback to the adolescent on their transition progress. Conversely, the presence of these signs continued to impact their lives as they restricted participation in desired activities and served as reminders that the effects of cancer and treatment extended beyond treatment completion. In addition to the presence of treatment residuals, fear of relapse also was a concern associated with the transition from off to post-treatment. However, adolescents tended not to let this be the focus of their lives. School reintegration challenges included disruption of school life and routines as well as academic and social concerns. Academic challenges included falling behind/catching up with work, maintaining motivation to do work, and readjusting to school demands and routines. Social challenges included answering peer questions, adjusting to peer awkwardness/discomfort, and managing peer reactions to their physical side effects. These challenges were not perceived by adolescents as sources of significant distress and, often times, they adapted and employed coping strategies to address these concerns in the school setting.
Adolescents also varied in their perceived need for transitional care and support during these transitions. Support received during the shift from off-treatment to post-treatment included advice from health care team members as well as relationships with peer cancer survivors across school, community, hospital, and camp settings. They received a variety of academic and social support during school reintegration. Teachers, family members, and peers provided academic support across home, hospital, and school settings. Teachers were a particularly important source of academic assistance. Accommodations and modifications also were provided to these adolescents at school. Peers, teachers, and other school staff provided social support. Based on the findings of the study, suggestions for future research and practical implications are offered.