The fluctuation of agency in teenagers and young adults with cancer
[Thesis]
Davies, Jane P.
Cardiff University
2015
Ph.D.
Cardiff University
2015
This thesis is the result of an in-depth study, which explored the experience of choice and control in decision making when five young people developed and were subsequently treated for cancer. The study was underpinned by the sociological theories of agency and structure against the backdrop of the developmental nature of adolescence and emerging adulthood. The experience of the disease was situated at a time when these young people were in the process of developing their early adult life plans and were at a fundamental crossroad in the life cycle. The diagnosis and subsequent treatment for cancer at this juncture impacted significantly on the lives of these five young people and those close to them. Exploratory case studies were utilised in an attempt to examine more specifically each young person's choice, intentionality, control and freedom in deciding all aspects of decision making, beginning with the onset of symptoms followed by diagnosis and treatment. Interviews, observations and documentary analysis were instigated to generate data. Multiple sources were selected to generate further insights and these included family, partners, friends and healthcare professionals who were close to the young people during their experience. Three overarching themes were identified during analysis of the data: 'life then', 'life interrupted' and 'life reclaimed'. Key elements of these themes included a number of complex and interrelating factors which were interwoven within the everyday lives of the young people. In the 'life then' phase, 'holding on' to agency prior to diagnosis and the importance of close and intimate relationships was illuminated. In 'life interrupted', agentic power during treatment, in terms of the range of decision making and the complexity of the parental role, were prominent. In 'life reclaimed' the 'different but determined' nature of young people's behaviour and re-aligned agency was transparent as they made their way towards the end of treatment. The findings culminated in the illumination of individual trajectories relating to the fluctuating nature of agency during the cancer experience. These incorporated the three overarching themes as three sequential phases. Commonalities in this regard were also identified across the five cases. Several discussions with practice colleagues resulted in the formulation of potential ways in which ultimately these trajectories might be applied to practice in the future.