Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.
Anne L Ersig, Allison Werner-Lin, Lindsey Hoskins and 4 others
PMID 30537877WHAT IT FOUND
Mutation carriers' decisions about testing, screening, surgery and childbearing were shaped by family histories, close relationships and trusted nonfamily sources.
Disclosure timing was negotiated, not simply immediate.
Key findings
01Mutation-positive women's risk-management actions were nested within relationships with at-risk family members, nonbiological kin and nonfamily members, particularly sisters, other female relatives and partners.
02Some women delayed or changed the order of testing, screening, surgery or childbearing plans to protect a relationship, preserve a caregiving role or keep future children options open.
03Women sought information from health care providers and support groups, then shared it with relatives to inform family choices.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 12 women were analysed, and they were English-speaking BRCA1/2-positive women aged 18 to 35 at initial recruitment. The interviews came from a breast imaging study cohort, not a sample chosen to represent all mutation carriers. The paper uses composite cases drawn from multiple participants, so the stories are not one real family's full account. The study describes meanings and decisions; it did not test a communication intervention or measure clinical outcomes.
Declared interests
The analysis used data from the National Cancer Institute's Breast Imaging Study, and the authors declared no potential conflicts of interest.
The easy way to misread this
Do not read these composite cases as evidence that a particular family communication strategy improves screening, surgery uptake or survival. The study describes how women talked about relationships and decisions. It did not test an intervention or measure outcomes.