The structure of emotional support networks in families affected by Lynch syndrome

Abstract

Genetic risk is particularly salient for families and testing for genetic conditions is necessarily a family-level process. Thus, risk for genetic disease represents a collective stressor shared by family members. According to communal coping theory, families may adapt to such risk vis-a-vis interpersonal exchange of support resources. We propose that communal coping is operationalized through the pattern of supportive relationships observed between family members. In this study, we take a social network perspective to map communal coping mechanisms to their underlying social interactions and include those who declined testing or were not at risk for Lynch Syndrome. Specifically, we examine the exchange of emotional support resources in families at risk of Lynch Syndrome, a dominantly inherited cancer susceptibility syndrome. Our results show that emotional support resources depend on the testing-status of individual family members and are not limited to the bounds of the family. Network members from within and outside the family system are an important coping resource in this patient population. This work illustrates how social network approaches can be used to test structural hypotheses related to communal coping within a broader system and identifies structural features that characterize coping processes in families affected by Lynch Syndrome.

“I have always lived with the disease in the family”: family adaptation to hereditary cancer-risk

“…Interviews revealed networks of family support dealing hereditary cancer syndrome as a shared stressor. These mechanisms of communal coping (collaborative processes to deal with a distressing event that is perceived as a common threat) have been previously identified in hereditary cancer syndromes [ 4 ].…”

“…Carriers of these pathogenic variants suffer from hereditary cancer syndromes, and present an increased risk of developing cancer over the course of their lives [ 1 – 3 ]. The management of these genetic conditions is a family-level process that involves sharing clinical information with family members who may also have inherited the syndrome and need to undergo diagnostic testing [ 4 – 7 ]. In addition, a positive genetic test and decisions about risk-reduction procedures may cause distress not only in pathogenic variant carriers, but also in their family members [ 8 ].…”