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

Transl Behav Med. 2019 May 16;9(3):493-503. doi: 10.1093/tbm/ibz012.


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 content-analyzed (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.

Keywords: Breast cancer; Children; Families; Genetic counseling; Genetic testing; Health communication.

Publication types

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

MeSH terms

  • Adaptation, Psychological*
  • Adolescent
  • Breast Neoplasms* / genetics
  • Child
  • Family* / psychology
  • Female
  • Genetic Predisposition to Disease
  • Genetic Testing*
  • Health Communication*
  • Health Literacy*
  • Humans
  • Interviews as Topic
  • Male
  • Ovarian Neoplasms* / genetics
  • Qualitative Research
  • Young Adult

Supplementary concepts

  • Breast Cancer, Familial