Lynch syndrome (LS) is an inherited cancer susceptibility syndrome associated with mutations in mismatch repair genes (MLH1
, and PMS2
; Lynch & De la Chapelle, 2003
). The lifetime risk of developing associated cancers such as colorectal, endometrial, ovarian, small intestine, pancreatic, and brain is high among mutation carriers, ranging from 47% to 85% if no preventive actions are taken (Lindor et al., 2006
). It is estimated that up to 5% of all colorectal cancer cases may be due to LS (Aaltonen et al., 1994
). The identification of a mutation within a family allows other members to consider genetic testing to determine if they carry the disease causing mutation and thus need to engage in preventive behaviors (Winawer et al., 2003
). Participating in colonoscopy screening at an early age (20–25 years) and frequently (every 1–2 years) can lead to a dramatic reduction in colorectal cancer morbidity and mortality among those suspected or known to have LS (Vasen et al., 2007
) because precancerous polyps can be detected and removed through colonoscopy (Jarvinen et al., 2000
). However, the identification of a mutation can also have undesirable impacts on family members. Because of the inherited nature of the illness, remaining biological family members are at increased risk for developing the associated conditions, potentially impacting their psychological well-being (Meiser, 2005
). In addition, because multiple family members are affected by the condition, it is often necessary to coordinate care and support within families, which can lead to additional strain on family systems.
Characteristics of the familial social environment and the extent to which social resources are exchanged have been shown to influence how individuals address health concerns and conditions (Berkman & Glass, 2000
), particularly for inherited conditions (Rolland & Williams, 2005
). A positive social environment within the family (high cohesion and low conflict among members) was associated with improvement in psychological well-being of individuals in families affected by LS (Ashida et al., 2009
). In terms of social resource exchange, the provision of emotional support helped to facilitate the psychological well-being of members in families affected by hereditary breast and ovarian cancer syndromes (HBOC; Hughes et al., 2002
; Koehly et al., 2008
). The exchange of informational support can facilitate engagement in primary prevention (e.g., informing about preventive behaviors) and secondary prevention (e.g., informing about screening for early detection) strategies among family members (Christophe, Vennin, Corbeil, Adenis, & Reich, 2009
). Social influence among family members, specifically encouragement to screen, has also been shown to motivate individuals to engage in colon cancer screening within families affected by LS (Ersig, Williams, Hadley, & Koehly, 2009
). For individuals who develop cancer, tangible and emotional support from family members becomes essential through treatment and recovery processes.
When individuals appraise the risk of developing illnesses, it can lead them to engage in “problem-focused” (e.g., undergoing cancer screening) or “emotion-focused” coping (e.g., cognitive reframing; Leventhal, Leventhal, & Cameron, 2001
). In the context of family systems, problem-focused coping, found to be more adaptive in addressing chronic health conditions (Maes, Leventhal, & DeRidder, 1996
), can be examined using a “communal coping” framework. This framework explains the processes through which a group of individuals with a common health threat develop cooperative efforts to address the threat (Afifi, Hutchinson, & Krouse, 2006
). According to this framework, family members first communicate about a shared stressor. As a result, family members may appraise the issue as their common health threat or problem and may develop cooperative actions to address this problem. For families affected by LS, coping can be effective if family members communicate about LS risks, appraise LS as a common health threat, and develop cooperative strategies to address it (e.g., provide social support and encourage screening; Lyons, Mickelson, Sullivan, & Coyne, 1998
). This framework has been used to understand health behaviors among couples (Lewis et al., 2006
) and to study adaptation among sisters from families affected by HBOC (Koehly et al., 2008
). In this study, we use this framework to evaluate the extent to which constructs of communal coping (e.g., risk communication, social support, and influence) occur within families affected by LS.
According to the interdependence model of social influence and interpersonal communication, social influence can affect individuals’ health behaviors (Lewis, DeVellis, & Sleath, 2002
). Family constitutes an influential social context in which members from different generations share mutual interests, experiences, and values. Family relationships have been targeted for health interventions, for example, to facilitate the well-being of older individuals by eliciting social support from younger family members (Silverstein & Bengtson, 1994
) and to encourage older adults to undergo cancer screening by mobilizing their adult children (Bullock & McGraw, 2006
). Among families affected by LS, it was shown that encouragement from family members may lead to participation in colonoscopy (Ersig et al., 2009
). Given the tremendous benefits of colonoscopy in reducing morbidity and mortality, understanding the characteristics of the social relationships through which screening encouragement flows among these high-risk individuals is important so that such relationships can be capitalized upon in family-based interventions.
Numerous studies have looked at whether older individuals receive sufficient support or belong to social networks that facilitate their well-being (Arthur, 2006
; Hawkley & Cacioppo, 2007
). However, less explored is the social role of older adults as providers of resources to their younger generation family members. Older generations tend to provide more affection (Giarrusso, Stallings, & Bengtson, 1995
) and resources than younger generations within families (Baker, Silverstein, & Putney, 2008
; Bengtson, 2001
). One study reported a primary reason for multigenerational households as children needing support from their elderly parents rather than parents needing support from their adult children (Ward, Logan, & Spitze, 1992
). Furthermore, social influence from older network members was significantly more important compared with the influence from younger members in motivating family members to engage in screening for cardiovascular disease and diabetes (Ashida, Wilkinson, & Koehly, 2010
). Older generation family members are especially important in families affected by LS as they tend to know more of their family health history, information used to determine disease risk levels of other members (Goergen et al., 2010
). They are also likely to have gained more psychological resources to cope with illness through their experiences (Baltes & Smith, 1990
). Therefore, older individuals may be ideal targets in family-based interventions to facilitate the well-being of their family members through enhanced risk communication, support provision, and social influence to increase cancer surveillance.
The current study explores the social roles of older individuals (ages 60 years or older) in families affected by LS and evaluates whether social resources fundamental to communal coping processes (i.e., risk information, social support, social influence) are exchanged more within relationships that involve older network members compared with relationships between two younger members. More specifically, we evaluate whether older network members are more likely to be providers of various types of social resources compared with younger members. Because of the importance of colonoscopy screening among this population, we further evaluated the characteristics of social relationships (e.g., demographic composition, communication, support exchange) associated with screening encouragement to inform future practice that aims to promote communal coping processes.
Much of the previous research evaluated social roles from the perspective of older individuals themselves (Mendes de Leon et al., 1999
; Seeman, Lusignolo, Albert, & Berkman, 2001
). This study moves beyond to examine older individuals’ social roles as viewed by other network members using social network methodology. Evaluation of social roles in this manner will help us identify potential pathways through which health-related cognitions and behaviors of family members can be indirectly influenced by older relatives. Because evidence also supports the importance of older individuals being active in their social environment to maintain their own well-being (Glass, Seeman, Herzog, Kahn, & Berkman, 1995
), such approaches are likely to help facilitate the well-being of not only younger family members but also older members as well.