The education engagement, coping and well-being of teenagers with cancer

Introduction: Every year approximately 2000 teenagers are diagnosed with cancer in the U.K. alone (Brierley et al. 2009). Being diagnosed with cancer during this important developmental stage has been described as a “double penalty” for young people, as they adapt to their changing developmental situations alongside the psychological and social impact of their cancer (Lombard et al. 2013). Many teenagers have been shown to desire continued engagement with their education after a diagnosis of cancer (Gibson et al. 2005), but how do they experience this and what factors are involved? Aims: There were three main aims of this thesis 1) to investigate the experiences of teenagers as they try to maintain engagement with their education following a diagnosis of cancer; 2) to produce an evidence base for the area of education engagement that was centred on the perspectives and experiences of teenagers with cancer; and 3) to provide evidence and recommendations for the future development of services to appropriately support teenagers with their education following a diagnosis of cancer. Methods: The main study recruited 12 teenagers (aged 13-16) to participate in interviews and complete questionnaires at 3 time-points over the 9 months following their diagnosis of cancer. Participants were asked to engage in a visual interview approach, where they provided images to represent their experiences, which were then used as a stimulus for discussion. Interviews were transcribed verbatim and qualitatively analysed using Interpretative Phenomenological Analysis. Findings: Participants experienced their ongoing engagement with education as a complex interaction of different versions of themselves moving through intersecting timelines related to education, treatment and adjustment to cancer. Underpinning their education experiences was a fluctuating desire to be treated normally alongside the often contradictory need for special consideration as a young person with cancer. Engagement with education was hindered by many factors including; telling others about their cancer, altered peer group dynamics, not feeling part of the school community and the perception of changes in themselves over time. Conclusion: Education is an important issue for young people, even in the context of a cancer diagnosis. School is an environment where changes caused by cancer to peer dynamics, appearance, mobility, ability, and a personal sense of self are brought into sharp focus. The work presented in this thesis has implications for future research, but more importantly for the way that services are designed and implemented to support young people with their education after a diagnosis of cancer.