The lived experience of prophylactic total gastrectomy: a phenomenological inquiry

Hodge, Jenelle (2016) The lived experience of prophylactic total gastrectomy: a phenomenological inquiry. Masters thesis, Memorial University of Newfoundland.

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Abstract

Hereditary diffuse gastric cancer (HDGC) is associated with early age of onset and poor prognosis. Individuals who test positive for a CDH1 gene mutation are at a significantly increased lifetime risk of HDGC and face difficult proactive treatment decisions. Currently, two risk management options are presented to those at risk of HDGC: (a) annual endoscopic surveillance or (b) removal of the entire stomach organ—prophylactic total gastrectomy (PTG). Little is known about how patients experience PTG. The purpose of this study was to gain an understanding of the reality of PTG as experienced by the patient from the time they realized their genetic risk through to their decision-making, hospitalization, recovery, and reflection upon the experience. Semi-structured interviews were carried out with seven individuals who had previously undergone PTG. Interview data was analyzed using van Manen’s (1990) approach to phenomenology. Three substantive themes with supporting subthemes were identified: playing the hand you’re dealt, living a health–illness paradox, and moving forward. Viewed together, the three substantive themes form the essence of the patient experience of PTG—choosing to be a previvor. This study is among the first to explore the patient experience of PTG, thus findings have implications for nurses and other health-care professionals caring for this unique patient population.

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