Exploring resources for intrafamilial communication of cancer genetic risk: we still need to talk

Abstract

While the importance of intrafamilial communication of hereditary cancer risk has been acknowledged, the factors that promote and act as barriers to patients disclosing their information to their families are complex and emerging. This raises the question: How are patients guided in practice to contemplate intrafamilial communication? Focusing on breast cancer, we conducted an exploratory study examining current resources supporting patients and health-care professionals, and isolated the messages surrounding intrafamilial communication of cancer risk. We find the duty for health-care professionals to counsel patients regarding intrafamilial communication is acknowledged to varying degrees by multiple actors in the cancer care delivery landscape, including health-care professional associations, health service organizations, and patient groups. A range of medical, psychosocial, and other factors underlying intrafamilial communication are acknowledged in messages to patients. Patients, however, are often referred to a single group of health-care professionals to discuss their diverse and complex needs. At the same time, messages aimed at patients appear to place the emphasis on barriers that could exist for patients contemplating intrafamilial communication, while highlighting the benefits families derive from such communication. Taken together, this points to a lack of coherence within materials directed to patients and suggests the need to do coordinated research among stakeholders to address two related issues: (1) determining who are the actors best positioned to send messages surrounding intrafamilial communication to patients and (2) addressing the content of messages conveyed in patient materials.

Figure 1

Levels of acknowledging IFC among actors. Acknowledgment of IFC can be understood as levels that build upon each other. In Level 1, familial interest in a patient's genetic information is simply acknowledged. In Level 2, not only is familial interest acknowledged but also a role for health-care professionals in guiding IFC is also acknowledged. In Level 3, in addition to acknowledging familial interest and the role for health-care professionals, resources are provided for patients and families to facilitate IFC. Acknowledgment of IFC among actors in the cancer care delivery can be understood as a continuum, where acknowledgment of IFC is less among health professional associations. Overall, among each of the actors, relatively few resources are offered for patients and families in support of IFC.