Understanding the complex interplay between the social context that surrounds family members and their psychological functioning has been relatively understudied, despite its potential importance in providing care to at-risk families. In part, this may stem from difficult methodological issues in defining and assessing social context. Yet, it is important for researchers to understand how the familial support context is related to the psychological functioning of women having genetic testing for BRCA1/2. Toward this end, we investigated whether sisters from HBOC families share appraisals of risk and worry regarding breast and ovarian cancer; and examined whether psychological adaptation is improved by the use of social integration and cooperative support resources among sisters from HBOC families.
Significant within-family correlation was found for breast cancer risk and worry, suggesting that sisters perceived a shared threat for breast cancer. The finding that those women who knew they were mutation-negative prior to assessment viewed themselves as being at significantly reduced risk of both breast and ovarian cancer versus carriers and mutation-unknown participants is consistent with the literature [41
]. However, these women also reported levels of cancer worry that were similar to carriers and mutation-unknown participants. Although previous studies suggest that mutation-negative women experience a decrease in cancer worry following genetic testing [42
], the current results suggest that it may be difficult for mutation-negative women to transition from a lifetime of worrying about breast/ovarian cancer risk based on their strong family history to believing
themselves at general population risk [43
The significant intra-family correlation of anxiety and somatization scores indicates that sisters share levels of distress. Interpersonal attachments expose individuals to stress experienced by others in their network through the processes of contagion [44
], in which interconnected individuals indirectly transfer their stress or successful adaptation to stress to another person [47
]. Communal aspects of coping were associated with anxiety and somatization in our data, suggesting that the overlap in support resources among sisters may be a mechanism through which sisters develop shared levels of anxiety and somatization. Although a causal relationship cannot be determined within the current study design, future research will aim to understand whether shared support resources do lead to a contagion process within families. Interestingly, depression did not exhibit this clustering pattern, suggesting that this mood disorder is not related to sisters’ interactions. That communal coping indices were not associated with depressive symptoms further suggests that depression may represent a psychological construct better suited to individual rather than communal approaches to coping.
Larger numbers of shared emotional supports were inversely associated with anxiety and somatization scores. Considering this effect with the clustering of anxiety and somatization levels, sisters who share a larger number of emotional supports have lower and similar levels of anxiety and somatization, whereas sisters with fewer shared emotional supports have higher and similar levels of anxiety and somatization. Additionally, access to larger numbers of support resources was negatively associated with anxiety. The potential impact of emotional support on anxiety and somatization and the lack of an association with tangible assistance indicate the value of intervention strategies that encourage developing coordinated emotional support resources within the family to reduce anxiety among sisters adjusting to their HBOC risk. This may be particularly relevant in families where all sisters or only a single sister carries the deleterious mutation [48
Larger numbers of shared informational supports correlated positively with somatization scores, suggesting that communal coping might undermine coping effectiveness by exacerbating somatization symptoms [20
]. These results highlight the potential for negative adaptation when sisters communicate about their HBOC risk jointly with many family members. Being socially connected is highly beneficial to the coping process; however, this can incur a cost if the stress spills over onto others [20
]. Alternatively, sisters with higher levels of anxiety may feel a greater need to discuss their risk of HBOC with many family members. Our results suggest a possible need for the provision of distress-reducing resources for sisters with a highly clustered risk information exchange system within the family.
We were surprised that reciprocity in support among sisters was not significantly associated with reduced distress. Some research suggests that actual support is not as meaningful as perceived support availability in encouraging successful coping [51
]. In this report, we examined the reciprocity of support based on the overlap between participating sisters’ responses on their CEGRM assessment. We did not assess participants’ perceptions of whether support was reciprocated, a concept related to mutuality [53
]. This finding represents a measurement limitation that presents an avenue for further inquiry. The Support Bank Theory [24
], in which reciprocity is construed as a set of payments and withdrawals that evolve over time, a process not tractable in cross-sectional data, represents an alternate explanation.
Several important limitations of this study warrant consideration. First, our analysis was based on cross-sectional data from a relatively small sample of sisters from HBOC families. Although the sister dyad design, use of CEGRM data, and social network methods are unique, the lack of prospectively collected information for this initial analysis limits inferences regarding the directionality of the observed associations. Thus, we cannot determine whether social integration and communal coping reduce distress or whether the psychological context of distress places constraints on families’ social environments. Future research using a longitudinal design will permit disentangling the directionality of these effects, and provide guidance on how to integrate these findings into genetic education and counseling efforts tailored to the needs and social context of the family.
In addition, there are several measurement concerns with regard to the social integration and communal coping indices. It has been argued that the strength (or quality) and duration of the relationship are important characteristics to consider [13
]. Unfortunately, the current CEGRM implementation does not capture these factors. With regard to the communal coping indices, not all sisters within each family participated in the current study, limiting our ability to measure reciprocity in support comprehensively. However, non-participating sisters were included in the shared support index as well as the quantity of available supports; therefore, their role in the coping process was not completely ignored. Finally, we were unable to consider shared support from non-family members because there was insufficient information about the identities of participants’ non-familial relationships to link information across sisters. There almost certainly are shared supports among friends or coworkers that were not detected in these analyses.
Despite these limitations, this study represents an important early step in examining a communal framework for understanding coping with hereditary disease. Our findings suggest that the quantity, function, and communal aspects of social exchange are differentially correlated with levels of anxiety, somatization, and depression. Further, coordinated support resources within the family may be indicative of either adaptive processes, as in shared emotional supports, or maladaptive when considering the exchange of hereditary risk information. Families are complex social systems that can facilitate or impede the coping process; the data presented herein suggest there may be real value in elucidating the social context in which risk communications and support processes occur. These results have important implications to health-care providers as they facilitate adaptation for at-risk sisters and their families. The insight gained from prospective, follow-up studies hold genuine promise for improving clinical management of the complex psychological and behavioral issues occurring not only in families where sisters are at risk for developing breast/ovarian cancer but also for families at increased risk for other inherited cancers as well.