Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis.

ABSTRACT:

Objectives

To explore patterns of communication among families with a Lynch syndrome diagnosis and understand what resources could facilitate family communication.

Methods

127 probands (i.e., first person in family with identified mutation) and family members participated in semi-structured interviews about: how they learned about the Lynch syndrome diagnosis, with whom they shared genetic test results, confidence in sharing results with other family members, and helpfulness of educational resources.

Results

Both probands and family members were most likely to share genetic test results with parents and siblings, and least likely to share results with aunts, uncles, and cousins. Most participants felt very confident sharing their test results with family members, but

SUBMITTER: Petersen J 

PROVIDER: S-EPMC6179927 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature