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in Twombly, 2004). The NCCS was established to move the perception from victim to
survivor by Dr Fitzhugh Mullan, a survivor of cancer himself and whose quote is cited
at the beginning of this chapter. He coined the phrase to describe the “ seasons of
survival” in an essay of his own cancer experience (Mullan, 1985). There has been a
recent resurgence of debate about the term cancer survivor. In one study that examined
the “survivor identity” of women with breast cancer, Kaiser (2008) noted that while
some women identified with the survivor label which assisted them in adjusting to life
after cancer, others rejected it and rarely referred to themselves by this term. In my
experience this view is shared by young people who have had a childhood cancer.
However as was reported by Twomby (2004) “no one has yet come up with a better
term”. For these reasons the term childhood cancer survivor is used throughout this
thesis but it is acknowledged that this may not be a term young people who have had a
cancer use to define themselves.
1.5 Structure of the Thesis
Chapter 1 has identified the purpose of this study: to describe psychosocial
wellbeing of childhood cancer survivors. The long term consequences, both physical
and psychosocial following a childhood cancer and/ or treatment have been introduced
and rationale for the study design explained. The aim and significance of the study have
been stated.
Chapter 2 presents a critical review of the existing literature and research on the
aspects of the psychosocial wellbeing of survivors of childhood cancer. A summary of
this chapter identifies the lack of consensus of the psychosocial impact for survivors and
the absence of New Zealand specific research.
Chapter 3 describes the research objectives and the methodological approach for
this study. The research instrument – the MCASI questionnaire is described as are the
four standardised measures of psychosocial wellbeing. The procedures followed in
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