A narrative study exploring representations of identity for young adults with cancer: from diagnosis through treatment
I would like to thank the Florence Nightingale Foundation, the Teenage Cancer Trust Research Scholarship 2014-2015 and the Raisa Gorbachev Foundation for the research award which supported this year of work.
I would also like to thank my supervisors, Professors Jeremy Whelan, Faith Gibson and Daniel Kelly; Judy Foster and Professor Andrew Cooper from the Tavistock Clinic; and most importantly those who participated in this study.
Abstract
The impact of cancer on young people superimposed on the developmental processes toward adulthood is recognised (NICE, 2005). Despite this there has been limited in-depth research to understand the experiences of young adults with cancer. This Doctoral study aimed to explore the issues that contribute to the impact of cancer, on young adults’ evolving sense of self and identity, by listening to the stories of young adults over one year from the time of diagnosis.
The longitudinal narrative study was grounded in Ricoeur’s (1984) notion of narratives as stories of experience; together with the psychosocial view of the social sciences to facilitate going deeper into the data (Clarke and Hoggett, 2008).
18 young adults (16 to 30 years of age) took part in the study. Eight of the participants took part in three interviews over a year, 6 participants in two interviews. Data included conversational style interviews using free association; reflection of images taken; and detailed reflexive notes. Regular psychotherapeutic debriefing and an ongoing psychosocial research seminar group at the Tavistock Clinic created the space for reflection and awareness. Data were analysed longitudinally across individual cases; an integrated data framework from all the data was then developed.
This is the final report to the Florence Nightingale Foundation but the writing up of the study within in its PhD thesis is still in progress, expected to be completed by the end of the year. The study demonstrates the value of storytelling over time for making sense, for patient centred practice and getting beneath the surface of experience. The importance of exploring both the ‘said’ and ‘unsaid’; the challenge of ‘being with’ and ‘standing alongside’; and the nature of psychosocial reflexivity all have important implications for empathic and compassionate care .