“The Diagnosis Is Just the Tip of the Iceberg”: Family Storytelling about Hereditary Cancer

Abstract

Advances in science and genomic medicine are leading to more discoveries of genetic variations associated with diseases, making family health history and genetic testing important diagnostic tools for physicians. Family communication about the family’s health history can alert individuals to their risks and facilitate prevention; however, these conversations can be difficult due to the emotional nature of the family’s medical history. In families with a long history of hereditary cancer, individuals have often watched their close family members suffer or die, making the history of cancer for these families become highly integrated into the family’s identity. Further, when members engage in these difficult conversations about the family history of hereditary cancer, they are also confronting their own risks of developing cancer. Telling stories can help family members make sense of and cope with their difficult and meaningful health experiences. The primary goal of this study was to explore the content of family stories by examining how narrative framing may contribute to coping, perceptions of risk, and medical decision-making. The second goal of this study was to examine how the process of joint storytelling about hereditary cancer influences coping, perceptions of risk, and medical decision-making. This study recruited 42 family dyads with a prevalent family history of hereditary cancer to participate in a phone interview in which they jointly told their family story of hereditary cancer. In exploring the content of these family stories, prevalent frames arose including empowerment, contamination, laissez faire, and competing frames. Each frame gives insight into how families are coping, their perceptions of risk, and how they make medical decisions. Results examining the process of joint family storytelling found that families who were high in interactional sense-making behaviors such as engagement, turn-taking, perspective-taking, and coherence created family narratives that served as a reference point to help members exchange emotional support, share information about risk, and shape medical choices to better manage hereditary cancer risks. Findings from this study provide insight into how families with hereditary cancer make sense of their risks collectively and provides intervention points to help practitioners support patients as they communicate about hereditary cancer.