A Qualitative Investigation of Communication Privacy Management (CPM) within Families with Hereditary Non-polyposis Colorectal Cancer (HNPCC)



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This study examined communication privacy management (CPM) among persons with Lynch syndrome (LS), specifically seeking to understand (a) the prompts that motivate participants to share LS health information, (b) the relatives with whom they share the information, and (c) the mediums through which they communicate the information. Based on responses from 32 LS mutation carriers, the vast majority of participants demonstrated high permeability orientations with close and distant family members through in-person visits, phone, email, and social media. Participants characterized by moderate permeability shared what they considered important LS-related health information with close, distant, and conflict family groups through phone, email, social media, through other family members, and through email and postal mail attachments. Though there were very few instances of low permeability, participants in this category chose not to share any LS information with certain family groups due to level of health importance, maturity, appearing weak, not wanting to cause stress, or because they did not think their relatives would care or be interested in the information. The implications of this study could provide the basis for a more widespread approach by offering physicians, genetic counselors, and family members a new understanding of communication privacy and hesitancy in sharing, as well as new means of raising genetic risk awareness among all family groups.



CPM, Lynch syndrome, HNPCC, Gene mutation, Family communication