Our results define the important roles that family members play within the processes of gathering and disseminating health information. Prior research suggested that genetic risk information flows through first-degree relatives.16
Our current findings, however, refine and highlight the differential roles that family members assume in family health information gathering and dissemination. Parents were clearly of special importance in the gathering of health information, because they are often the gate-keepers to the health information of older and more distant family members for their children. Thus, interventions that focus on the gathering of accurate family health history information are likely to be more effective if they engage the older generation of the extended family. Reciprocally, the act of engaging older family members inherently enhances their health through improved social engagement within the family.36
This intergenerational communication pattern, with younger generations less likely to be engaged in gathering, disseminating, and blocking family risk information suggests that the family of origin, rather than the coresident or nuclear family, may be particularly important in health communication. The family of origin represents the family in which one is born and is characterized by extended multi-generational relationships.37
Coresident families are those living within the same household and is inclusive of diverse family structures,38
whereas nuclear families are defined by heterosexual parents and their children.37
Older generations play an important role in answering children’s questions regarding biology and genealogy.39
However, family-based interventions tend to focus on co-resident or nuclear families, rather than families of origin.40
Our results suggest that a shift in perspective may be warranted when the goal is to engage families, including children, in a dialogue regarding their family risk of disease, especially given evidence that health beliefs develop during childhood in the family of origin.41,42
Our data support a strategy that relies on older family members as a critical source of family health information.
Health information gatherers tended to be women, regardless of their biological relatedness to the participants, whereas information disseminators tended to be female first- and second-degree relatives. These findings suggest the importance of involving biological kin in disseminating health information to family members. The cancer risk associated with BRCA1/2
mutations is manifest disproportionately among female family members, which might explain why women play such an important role in intrafamilial communication. However, this pattern of women taking on the role of disseminating family health information has also been reported in familial syndromes in which men and women are at similar risk, such as hereditary colorectal cancer16
and familial melanoma.43
The central role played by cancer-affected family members in the dissemination process is consistent with using disease diagnosis as a teachable moment in a family health communication intervention.44-46
Being informed of their genetic risk from a family member who has been affected by a syndrome-associated cancer may carry particular salience for at-risk family members. In addition, it is important for affected family members to share their diagnosis with family members in an effort to update family health history.47
Family members associated with gathering and disseminating family cancer risk information were also involved in exchanges of tangible assistance and emotional support. Thus, these social support relationships permit identifying specific persons within the family system for recruitment and engagement in intervention efforts to enhance family health communication. The use of social-network approaches to identify peer leaders has been shown to be a reliable and valid method.48,49
However, the particular social relationships that are associated with identifying an effective family leader may differ depending upon the intervention context.9
Our results suggest that the gathering of information is a key component of the emotional support process, and that dissemination of information is associated with both emotional support and tangible assistance. In the aggregate, our data indicate that the ideal family leader would be a female family member who already provides both emotional and tangible support to others within the extended family system. Follow-up studies are needed to investigate whether such individuals are well-received in this role within families and to evaluate how such individuals can most effectively exert a positive influence on others in their families.
Importantly, blockers of information exchange tended to be spouses or partners and male first-degree relatives. This role of blocking may be reflective of a selective pattern of communication, in which women are more likely to communicate with their female family members than with male family members.50
Additionally, the family of origin has established routines for communicating about the genetic risk of cancer within the family,51
and families define their own mini-culture based on the values, rules, and rituals surrounding the exchange of resources and information.52
Spouses, as newcomers to the family, may have more difficulty in becoming a part of the communication routines regarding hereditary risk, because they have not been socialized within the culture that has developed through generations of cancer diagnoses and the family’s understanding of its genetic risk.53
However, spouses and partners are potentially key persons in gathering and disseminating information, particularly to their at-risk children, and in promoting appropriate screening behaviors to those at risk. Engagement of all family members in the education process, not just those at increased risk of disease because of genetics or strong family history, is an essential component in fostering a unified, cooperative approach to addressing a family’s shared health threat.
Male first-degree relatives within hereditary breast and ovarian cancer families have a 50% probability of carrying their family’s BRCA1/2
mutation, placing both themselves and potentially their children at risk as well. Their reluctance to discuss health information may compromise the care and support that they provide to members of their family of origin and to their own nuclear family. This behavior may be the result of gender role acculturation, grieving actual or anticipated loss of relatives, or their failure to appreciate that, despite hereditary breast and ovarian cancer being generally seen as a woman’s disease, male mutation carriers are at risk for specific BRCA1/2
-associated cancers and at risk for transmitting the mutation to their children.54
Family scripts depicting roles and norms are passed through generations as part of the family narrative.55
Differences in the way males and females are socialized in understanding and coping with their genetic risk may be an intrinsic part of the family script.56
Thus, our results point to the need to identify these scripts within the family and to tailor intervention components specific to the family’s needs. It is important to note, however, that the current results represent the perceptions of female family members exclusively. Future research that captures the perspectives of men within these at-risk families would further enhance our understanding of the gathering, disseminating, and blocking of health history and genetic risk information within the family.
Although the results herein focus on the gathering and dissemination of health risk information as it relates to highly penetrant genetic mutations, they represent a model that informs family-based interventions aimed at facilitating family health information gathering and dissemination in general. The rapidly growing field of research in genomics has identified genetic variants that contribute to complex disease risk. Currently, these research advances are being marketed directly to consumers,57
and these new genetic tools are increasingly being used clinically.58,59
It is hoped that the personalized nature of genomic information may eventually facilitate health decision-making, motivate healthy lifestyles, and increase screening adherence, although we have a long way to go before the benefits of such interventions are proven. Because behavioral and genetic risk of disease also clusters within families, personalized proactive health care based on genomic risk information will have implications not only for individuals, but also their relatives. Development of tailored family health advisor interventions that facilitate the process of gathering and disseminating family risk information is likely to be vital as we move forward into this new health care arena.
The findings from this study may have limited generalizability because of the sample’s racial and educational homogeneity; future efforts should aim to assess whether similar patterns of gathering and disseminating health risk information are observed within families of varied cultural and socioeconomic back-grounds. Family risk education interventions that capitalize on known characteristics of the family structure, engaging older generations and families of origin in the process, may be particularly effective in informing individuals of their hereditary disease risk, as well as in helping family members adopt healthier lifestyles and adhere to screening recommendations. The success of personalized disease prevention is likely to require health care consumers to assume significant responsibility for the care of themselves and their loved ones.