This exploratory study offers insight into the ways that communication patterns are implicated in the formulation of individual and family level perceptions of disease risk through the analysis of each family’s communication networks and participants’ interview data. Our findings draw attention to how health information gained through the context of family experience or through genetic testing may variably influence perceptions of disease risk and beliefs about cancer prevention.
In families A and B, in which discussions about family cancer experiences and family health history seemed to occur more frequently, family members shared a belief that the risk of cancer among all family members was high. Participants from both families were well-informed of their family’s cancer history and spoke clearly about the relationship of family health history and their perceptions of cancer risk for themselves and their relatives. In contrast, Family C reported the least communication about family cancer experiences and family health history. Younger participants in this family tended to describe cancer as a hereditary disease more than the older participants (e.g., their parents, aunts and uncles, and grandparents), some of whom said they had never thought of cancer as a disease that ran in their family. Family health was not discussed widely among family members, to the extent that various participants noted that they were not aware that others had ever been diagnosed with cancer or that they were aware that other people in the family probably knew more about the family health history than they did. Family members of all ages often described their own risk of cancer or the risk of family members as “average” or “low,” along with a belief that cancer is largely a disease determined by individual lifestyle behaviors.
While there are certainly factors beyond the family that influence one’s perceived risk of disease, family experiences play an important role in how people make sense of a strong family history of cancer, especially in the absence of genetic testing information (Finkler 2000
). Family beliefs about the mechanisms by which cancer may have been passed on in the family were found within all families. Again, the two families with the highest proportion of communication about family cancer experiences had explanatory models of disease that implicated some form of inheritance or shared biological risk. Only a few explanations for cancer in the family were provided by participants in Family C, and these centered largely on individual behavioral factors, such as diet, alcohol consumption, and physical activity. These findings suggest the presence of explanatory models that are interesting because they may reflect beliefs that were held prior to genetic counseling about a familial versus individualistic nature of cancer. They also can provide a context within which new information about the etiology of cancer is received and interpreted (McAllister 2003
Narratives regarding the impact of genetic testing results on perceptions of cancer risk varied across these three families. Participants in families A and B who had previously conceptualized cancer as a familial disease did not report feeling surprised at learning that they themselves, or other family members, carried a genetic mutation for Lynch Syndrome. Generally, the genetic test results seemed to reinforce long-held beliefs about the prevalence of cancers in their families. The case was different for Family C. Learning that a genetic factor could be responsible for cancers in their family had a substantial impact on the way participants conceptualized cancer as a disease and their perceptions of risk. This influence was particularly notable among those participants who had not previously invoked heredity in explanations of cancer causation and risk. Still, participants across all of the families did not espouse deterministic beliefs about genetics and cancer risk. Lifestyle factors, particularly diet and exercise, as well as participating in cancer screening were emphasized as important means to offset any genetic risk of cancer across all families.
One might anticipate that families who discuss family experiences about cancer and family health history would also discuss genetic testing results to a similar degree. Family B was the only family that followed this expected pattern. Family A discussed genetic testing information to a lesser degree than they did family experiences with cancer or family history. Family C did not report a high proportion of people in the family engaged in discussions of family health history, but the proportion of family members that discussed genetic testing information was markedly higher.
Interviews with members of Family A indicated that a fear of social stigma, feelings of guilt, and a fear of cancer were associated with communication about genetic test results with other family members. Family members varied in who they would be comfortable sharing their results with, and suggested that they would disclose this type of information to other family members that they, themselves, had decided were at high risk, regardless of their actual risk based on their biological relationships. Discussions about genetic test results among members of Family B or C were not encumbered by these same barriers, even though many members also expressed a fear of cancer. In fact, based on the network assessments and interview analysis, it is possible that in Family C discussions about family health may not have been very common due, in part, to the fact that many family members did not conceptualize cancer as a familial disease. However, it appeared that after some family members underwent genetic counseling and testing as part of the study, the importance of family communication and awareness of the possible genetic component of disease became very important. For this family, participation in the research appears to have acted as an intervention, successfully raising awareness about the etiology of cancer and motivating family members to discuss this information with each other.
One common theme throughout all of the families’ interviews was the importance of cancer prevention, namely through beginning to screen for colon cancer at an earlier age. Family members thought it extremely important to encourage other members to engage in cancer screening and participate in genetic counseling and testing (Peterson et al. 2003
). The stories from these families elucidate that both an awareness of family history as well as genetic test results variably led individuals at high risk for cancer to engage in screening at an earlier age. Encouragement to participate in cancer screening was predicated by a strong family history of cancer in Families A and B, before genetic testing was available. Encouragement to screen did not happen in Family C, however, until participants completed genetic counseling and testing. Based on reports of their experiences with doctors in clinical settings, the key difference in these two types of family risk information is that physicians seemed to value genetic test results more than stories of strong family history. For example, genetic test results in Family A were a means by which one set of parents was able to advocate early screening for their children, one of whom was eventually diagnosed with colon cancer before the age of 30.
Differences in communication about either family cancer experiences or genetic testing information across these three families may reflect factors associated with ethnic/racial differences, socioeconomic differences, or education level (Royack-Schaler et al. 2004
). Allusions to cultural norms about communication regarding family health experiences or genetic testing information were scarce in the interview data; however, there were no specific questions in the cross-sectional study interview guide to elicit such norms.
Some unexpected findings did emerge. Socioeconomic differences that are associated with education and access to health care may affect a family’s awareness of the importance of sharing family health information or engaging in preventive health behaviors (Lipkus et al. 2000
). Yet, the family with the highest mean household income (Family A) was the only one in which a family member discussed socioeconomic hardship and lack of health insurance as a barrier to seeking out screening for colorectal cancer. Low education level and health literacy may be barriers to how patients interpret health information (Peterson et al. 2007
) and subsequently communicate with family members about health (Davis et al. 2002
). But, Family C, which reported the lowest mean income and talked the least about family health history, had two physicians in the family. These unexpected findings may indicate that the variability observed between families is indeed cultural in nature, stemming from fundamental differences in how health information is valued, the ways in which meanings are ascribed to this information, and norms for how it is shared within families.
Study Strengths and Limitations and Research Recommendations
The importance of ethnicity and cultural norms that guide family health communication has not been well studied, particularly in the area of genetic testing for Lynch Syndrome. For this reason, along with the small sample size, it is difficult to ascribe the variations that we see in patterns of communication for these three families to ethnicity or other socio-demographic factors. The differences we see in communication patterns could be due to cultural and social differences; however, they may also speak to the fact that individual family systems have unique idiosyncrasies that need to be explored to gain an understanding of how family health communication shapes risk perceptions. More research is needed to explicate cultural norms that guide family communication and how such norms intersect with other social factors known to influence risk perception and health behavior.
Other studies based on data from the cross-sectional qualitative study that employ larger sample sizes and contain more generalizable results have been published elsewhere (see Koehly et al. 2003
; Pentz et al. 2005
; Peterson et al. 2003
). The present study departs from this earlier work in that it is an in-depth, mixed-method exploration of the connection between communication patterns and perceptions of disease risk in three families of different racial/ethnic backgrounds. The small sample size and limited applicability of results are an obvious limitation. Nevertheless, given that there is a dearth of research on family communication and risk perception in the context of inherited cancer among families in ethnic minority groups, the inclusion of an African-American family and Hispanic family in the present study enriches the literature. An important contribution of this study is that it lays the groundwork for further research into ethnic differences in health communication and perceptions of inherited disease risk in the context of genetic testing. An added strength of this study is that it incorporates perspectives of multiple members of a single family into the analyses, providing a richness of perspective that cannot captured through interviewing a single family member. Finally, this study provides a model for future research in which empirical analysis of communication is combined with qualitative data analysis of social context.