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
Review Paper

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.

Keywords

BRCA mutation Young adult Emerging adult Family communication Cancer knowledge Risk perception Systematic review 

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Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  • Alison L. Young
    • 1
    • 2
  • Phyllis N. Butow
    • 1
  • Janine Vetsch
    • 2
    • 3
  • Veronica F. Quinn
    • 2
    • 3
  • Andrea F. Patenaude
    • 4
    • 5
  • Katherine M. Tucker
    • 6
    • 7
  • Claire E. Wakefield
    • 2
    • 3
  1. 1.School of PsychologyThe University of SydneySydneyAustralia
  2. 2.Behavioral Sciences Unit Proudly Supported by the Kids with Cancer Foundation, Kids Cancer CentreLevel 1 South, Sydney Children’s HospitalRandwickAustralia
  3. 3.Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW MedicineUniversity of New South WalesSydneyAustralia
  4. 4.Department of Psychosocial Oncology and Palliative CareDana-Farber Cancer InstituteBostonUSA
  5. 5.Department of PsychiatryHarvard Medical SchoolBostonUSA
  6. 6.Hereditary Cancer Clinic, Department of Medical OncologyPrince of Wales HospitalRandwickAustralia
  7. 7.Prince of Wales Clinical SchoolUniversity of New South WalesSydneyAustralia

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