We assessed family perspectives of hereditary cancer using open-ended interviews with 27 individuals from Lynch syndrome families. Transition to a family at increased risk, patterns of communication, impact on family relations and individual roles were identified as major themes. It should be stressed that there is a variety of outcomes in this kind of study and that counsellors should be aware of the individuality of family member’s responses. Learning about hereditary cancer had implications on several aspects, from worries about cancer to a communication burden. Experiential knowledge was important in this process. Families who had experienced cancer at a young age tended to inform children at a young age and encouraged genetic testing shortly after learning about heredity, which indicates illness and death as major motivators for genetic testing and surveillance . In contrast, individuals in families with few cancer cases or late onset reported finding it difficult to inform children and. young adults in such families expressed weak motivation and tended to postpone genetic testing and participation in surveillance programs. With increasing use of molecular screening and efficient prevention of cancer in families undergoing surveillance, present and future generations in Lynch syndrome families are likely to experience less cancer. Our findings suggest that extended information on the natural history of Lynch syndrome may be required to motivate individuals in such families for genetic testing and participation in surveillance programs [17, 18]. Experiences from routine examinations of patients with colorectal and endometrial cancer suggest that, although family history and analysis of tumor tissue suggested Lynch syndrome, only 1 in 5 patients made an appointment with a genetic counsellor [19, 20].
Individuals in families with Lynch syndrome are trusted with a large and complex information burden, which can be questioned since dissemination of information occurs through routes and methods determined by family members and is sensitive to personal interpretations and misunderstandings. Communication plays a significant role in managing life at increased risk of cancer and is likely linked to participation in surveillance programs and thereby to the possibilities of reducing morbidity and mortality from colorectal cancer [11, 21–25]. Misconceptions were identified among both carriers and non-carriers and were related to children’s risks and the outcome of genetic testing. Since misunderstandings can be resolved by updated information, continued contact with the families related to risk estimates and surveillance may be useful. Open communication has been found to facilitate the spread of information, reduce the risk of misconceptions and ease adjustment to difficult situations . Experience of cancer seems to facilitate openness, which has also been observed in hereditary breast and ovarian cancer [27, 28]. In contrast, poor communication is a major determinant of adverse consequences and lack of support from family members can increase vulnerability [26, 29].
The influence on family relationships was repeatedly referred to. Positive implications were more often described by carriers than non-carriers, which may reflect adaptation and coping [12, 30]. A minority of the families reported a negative impact, including isolation and guilt . Females often took on a coordinating and supportive role and may thus represent a target group for e.g. education regarding communication skills and updated information, which is consistent with observations that females are crucial in communicating genetic information [8, 31].