The education experiences of eight American adolescents in cancer survivorship

The aim of this thesis is to understand the experiences of eight American high school students who have been diagnosed with cancer. By increasing understanding of the challenges that adolescents in cancer survivorship experience, better support can be identified. The experience of cancer survivorship influences the physical, psychological, and social experiences of patients. As the survival rate of childhood cancers continues to increase, death becomes less likely making the need to maintain educational engagement during survivorship increasingly important. The research questions for this study were designed to address two main gaps in the current field of research. The first research question aims to address how the physical and psychological effects of cancer and treatment impact the participants' engagement with school. The second research question aims to understand the role that school plays for adolescents in cancer survivorship, including how participants experienced supplemental education during and after cancer treatment. This study uses a qualitative research methodology to address the research questions utilizing primarily semi-structured interviews and an adjusted version of the Adolescent Coping Scale. When used in combination with the interviews, the scale provides a picture of what the participants experienced and how they have been able to cope with the challenges they have faced. Interpretive phenomenological analysis was used to provide structure to the interview analysis. The results of this study show that fatigue and a compromised immune system have an impact on school attendance more than other physical effects during cancer treatment. As a result, adolescents are most at-risk of experiencing challenges in educational engagement during treatment. The results of this study also show that the feeling of uncertainty throughout cancer survivorship promotes fear and the feeling of a loss of control. Once treatment ends, fear of relapse is common. Physical and psychological effects were felt to improve as time passed. Another key result of this study is that the cancer experience results in a shift in perspective that becomes incorporated into the formation of identity. Participants feel different from peers as a result of the physical and psychological effects of the cancer experience. The results from the Adolescent Coping Scale indicate that school achievement, relapse and the worsening of physical side effects, and being treated different by peers were common concerns for the participants regarding their school, illness, and social concerns, respectively. Lastly, the participants view supplemental education as successful if it meets their personal academic and physical needs, is implemented consistently, and helps them to feel emotionally supported and socially connected. However, more research is needed that focuses on the implementation of policy at the state and district levels to discern whether this is a common challenge unique to this population of students with a physical or medical disability. The sample available for this research topic is not only limited to an extremely small population, but they are also a highly guarded population, making access for recruitment challenging. However, while generalization is difficult with a study of this size, the evidence collected on the participants' experiences during and after treatment provides valuable data on aspects of supplemental education implementation.