Family communication, risk perception and cancer knowledge of young adults from BRCA1/2 families

a systematic review

Alison L. Young*, Phyllis N. Butow, Janine Vetsch, Veronica F. Quinn, Andrea F. Patenaude, Katherine M. Tucker, Claire E. Wakefield

*Corresponding author for this work

Research output: Contribution to journalReview article

13 Citations (Scopus)

Abstract

Understanding challenges in familial communication of cancer risk has informed genetic service delivery. Parent-child interactions have received considerable attention, but few studies focus on young adulthood experiences within BRCA1/2 families. Young adults are approaching, or at a life stage where awareness of hereditary cancer risk is vital for informed choice of risk management options. This review assesses family communication, risk perception and cancer knowledge held by 18-40 year old individuals who have a parent with a BRCA1/2 gene mutation or carry the gene mutation themselves. Thirteen papers met the inclusion criteria. One utilized a 'mixed methods' methodology and the remaining used a qualitative approach. Findings were synthesized into themes and reported narratively. In general, parents are communicating openly about genetic risk with young adult offspring, but there is evidence that some young adults are withholding information from their parents about their own test results. Risk perception is influenced by a family history of cancer, childbearing plans and health providers' advice. Misconceptions about genetic risk appear to be common and gaps in hereditary cancer knowledge are evident. It is unclear whether incorrect knowledge was passed from parents to offspring. Health providers need to provide developmentally appropriate services for emerging adults (18-25 years old), with particular support in navigating through risk management options.

Original languageEnglish
Pages (from-to)1179-1196
Number of pages18
JournalJournal of Genetic Counseling
Volume26
Issue number6
DOIs
Publication statusPublished - Dec 2017
Externally publishedYes

Keywords

  • BRCA mutation
  • young adult
  • emerging adult
  • family communication
  • cancer knowledge
  • risk perception
  • systematic review

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