Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions

J Fam Nurs. 2019 Feb;25(1):28-53. doi: 10.1177/1074840718815844. Epub 2018 Dec 12.

Abstract

In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation, content, and derived benefit of these interactions. Participants discussed risk information and management strategies with biological and nonbiological network members for multiple purposes: discharging responsibility for risk information dissemination, protecting important relationships, and navigating decision trajectories. Evolving interactions with loved ones balanced long-standing family communication patterns with differing personal preferences for privacy or open sharing, whereas interactions with nonbiological network members expanded participants' range of choices for sources of risk management information. Ongoing assessment of social networks may help support engagement with risk management by aligning with patient social needs.

Trial registration: ClinicalTrials.gov NCT00012415.

Keywords: cancer; communication; family; risk management; social networks.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • BRCA1 Protein*
  • BRCA2 Protein / genetics*
  • Breast Neoplasms / genetics*
  • Breast Neoplasms / psychology*
  • Decision Making*
  • Family / psychology*
  • Female
  • Genetic Predisposition to Disease*
  • Genetic Testing
  • Humans
  • Interviews as Topic
  • Middle Aged
  • Mutation
  • Ovarian Neoplasms / genetics*
  • Ovarian Neoplasms / psychology*
  • Pedigree
  • Risk Management*
  • Social Networking*

Substances

  • BRCA1 Protein
  • BRCA1 protein, human
  • BRCA2 Protein
  • BRCA2 protein, human

Supplementary concepts

  • Breast Cancer, Familial

Associated data

  • ClinicalTrials.gov/NCT00012415