Paving the Way: A Grounded Theory of Discovery and Decision-Making for Persons Diagnosed with the CDH1 Marker

Abstract

Purpose: To understand the process of discovery and decision-making for adults with the CDH1 marker for hereditary diffuse gastric cancer (HDGC) and inherited breast cancer. Participants and Setting: Purposeful sampling included 20 participants; 17 adults (11 women and 6 men, ages 23–77) recruited through the No Stomach for Cancer organization; six participants were interviewed two times; with three healthcare providers also interviewed. Nineteen interviews were by telephone; one was in person. Methodological Approach: Grounded theory with constant comparison. Findings: The person diagnosed with the genetic marker CDH1 undergoes the decision-making process of Paving the way as they address this healthcare challenge. Paving the way explains the entry points for learning the risk, discerning testing for confirmation, choosing iterative individual cycles of surveillance, surgery, and ongoing adjustments postoperatively while normalizing to live longer. Implications for Nursing: Understanding the process of Paving the way explains and describes the nine key factors for decision-making and predicts the timing for nursing interventions for both post-genetic testing and pre- and postoperative assessment and planning. Knowledge Translation: Advocacy for the self and family is key to Paving the Way. Nursing has an opportunity to develop and expand the roles for navigator and counselor in the area of genetic testing. Patients undergoing PTG have chronic healthcare needs. Family implications for genetic testing require assessment beyond the individual.