Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: A qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment

Kenneth P. Tercyak, Suzanne M. Bronheim, Nicole Kahn, Hillary A. Robertson, Bruno J. Anthony, Darren Mays, Suzanne C. O'Neill, Susan K. Peterson, Susan Miesfeldt, Beth N. Peshkin, Tiffani A. DeMarco

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

Abstract

Children's literacy about the genetics of late-onset hereditary breast/ovarian cancer (HBOC) often develops through conversations with parents about BRCA gene testing and adults' cancer diagnoses. These conversations may promote early understanding of HBOC, but the long-Term impact on children's psychosocial adjustment remains unclear. We investigated cancer genetic health communication in BRCA-Tested families to consider benefits, risks, and moderating influences on children's understanding and well-being. Adolescent and young adult children (ages 12-24) of mothers who underwent BRCA testing 1+ years previously completed qualitative interviews that were transcribed, coded (intercoder K ≥ .70), and contentanalyzed (N = 34). Children readily recalled conversations about BRCA testing and HBOC (100%) that they considered important (94%), but implications for children were ambiguous and obfuscated their concerns. Psychosocial impacts were muted, multifaceted, and displayed a range of favorable (82%), neutral (71%), and unfavorable (59%) response-frequently co-occurring within the same child over different aspects (e.g., medical, concern for self and others). Children verbalized active (50%) and avoidant (38%) coping strategies: About 1:5 endorsed transient thoughts about vulnerability to HBOC, 1:3 had not further considered it, and all reported specific actions they had or would undertake to remain healthy (e.g., diet/ exercise). A majority (94%) of children had or would consider genetic testing for themselves, usually later in life (59%). Long-Term outcomes highlighted benefits (awareness of HBOC, psychological hardiness, healthier lifestyle behaviors), as well as some psychosocial concerns that could be managed through interventions promoting genetic health literacy.

Original languageEnglish (US)
Pages (from-to)493-503
Number of pages11
JournalTranslational behavioral medicine
Volume9
Issue number3
DOIs
StatePublished - May 16 2019

Keywords

  • Breast cancer
  • Children
  • Families
  • Genetic counseling
  • Genetic testing
  • Health communication

ASJC Scopus subject areas

  • Applied Psychology
  • Behavioral Neuroscience

MD Anderson CCSG core facilities

  • Assessment, Intervention, and Measurement

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