All in the family: Evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results

Abstract

Despite the potential importance of family communication, little is known about the process and content of communicating BRCA1/2 test results to relatives. The objectives of this observational study were to describe the process and content of communicating BRCA1/2 test results to sisters, and to evaluate whether the proband's carrier status influenced communication outcomes. Participants were 43 women who were the first family member to have genetic testing (probands). Probands reported on communication outcomes for 81 sisters. Process and content variables were evaluated 1-month after receipt of BRCA1/2 test results using the Family Communication Questionnaire (FCQ). Overall, BRCA1/2 test results were communicated to 85% of sisters, and carriers communicated their results to significantly more sisters compared to uninformative (96% vs. 76%, FET = 0.02). The most important reason for communicating results was to provide genetic risk information; however, compared to uninformatives, carriers communicated their results to significantly more sisters to obtain emotional support (74%) and to get advice about medical decisions (42%) (FET = 0.001). Carriers also discussed the possibility of discrimination and recommendations for cancer management with significantly more sisters. Among sisters to whom BRCA1/2 test results were not communicated, the most important reason for not sharing test results was because of emotionally distant relationships. The results of this study suggest that probands are likely to quickly communicate their BRCA1/2 test results to relatives and that although needs for social support may motivate family communication, emotionally distant relationships may be a barrier to communication with relatives.

Family health information sharing among older adults: reaching more family members

“…Evidence strongly suggests that reciprocal social support, compared to one-way provision or receipt of support, are especially important on the well-being of older adults (Heaney and Israel 2008;House et al 1988). Previous studies showed that social support exchanges among family members were associated with communication of disease risks within the family (Hughes et al 2002;Koehly et al 2009;van Oostrom et al 2007a). Thus, it is possible that the extent to which reciprocal social support exchange occurs within family systems determines older adults' desire and ability to share FHH information with family members.…”

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

“…Some tellers were able to overcome their concerns and fulfill the duty they felt to inform their family members, often by clinging to the hope of scientific progress (Hallowell et al, 2003). Others felt that the potential for disturbing or upsetting their relatives outweighed the benefits of disclosing, at least for the time being (Hallowell, 1999;Bradbury et al, 2007;Hallowell et al, 2005a;Hughes et al, 2002).Other less commonly mentioned barriers or deterrents for disclosures to family members included geographic distance Green et al, 1997), the assumption other relatives would disclose the information to family members (Claes et al, 2003), dilemmas 16 between family members about how to best disclose to others (Hallowell et al, 2005a), the teller's lack of confidence in their own communication skills (Daly et al, 2001;, the fear that the information would be misunderstood by family members (Hughes et al, 2002;Hamilton et al, 2005) and thinking the information would not be useful to the family member (Forrest et al, 2003;MacDonald et al, 2007;Daly et al, 2001;Claes et al, 2003). …”

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

“…Finally, this study might have overlooked other potential predictors of family relationship effects; family communication is probably one of them. Even if the genetic test result per se is known to be communicated to a great proportion of first-degree relatives, 15,16 less is known about the manner of telling, the information conveyed, and subsequent discussions about hereditary cancer. 1 Clearly, this important research area is embedded with several challenges, including the development of valid and sensitive measures of the unfolding process of family communication.…”

“…14 Previous studies have shown that individuals undergoing BRCA1/2 genetic testing share their test result with most, but not all, of their first-degree relatives quickly after it is disclosed. 15,16 Motivations to communicate include the desire to obtain social support and to offer advice about preventive health strategies. 15,17 Reasons for not communicating results to relatives include lack of a close relationship, infrequent communication, or thinking that the genetic information might upset a particular relative.…”

“…15,16 Motivations to communicate include the desire to obtain social support and to offer advice about preventive health strategies. 15,17 Reasons for not communicating results to relatives include lack of a close relationship, infrequent communication, or thinking that the genetic information might upset a particular relative. [17][18][19] Despite accumulating knowledge on the psychological and communication aspects of genetic testing, little is known about the effects of the testing process on family relationships per se.…”