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

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.

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Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.
Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA.
Department of Psychiatry, Georgetown University Medical Center, Washington, DC, USA.
Department of Behavioral Science, MD Anderson Cancer Center, Houston, TX, USA.
Scarborough Campus, Maine Medical Center Cancer Institute, Scarborough, ME, USA.
Cancer Genetics Program, Inova Health System, Fairfax, VA, USA.


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.


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

[Available on 2020-05-16]
[Indexed for MEDLINE]

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