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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.

Author information

1
Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.
2
Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA.
3
Department of Psychiatry, Georgetown University Medical Center, Washington, DC, USA.
4
Department of Behavioral Science, MD Anderson Cancer Center, Houston, TX, USA.
5
Scarborough Campus, Maine Medical Center Cancer Institute, Scarborough, ME, USA.
6
Cancer Genetics Program, Inova Health System, Fairfax, VA, USA.

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 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

PMID:
31094441
PMCID:
PMC6520800
[Available on 2020-05-16]
DOI:
10.1093/tbm/ibz012
[Indexed for MEDLINE]

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