High- and average-risk individuals' beliefs about, and perceptions of, malignant melanoma: An Australian perspective

Despite expanding knowledge regarding the genetics of melanoma, there have been few attempts to define the psychosocial experiences of individuals with a family history of this disease. This study explored the ways in which individuals at varying levels of risk perceive, and respond to, melanoma. Forty semi-structured interviews were undertaken with affected (n = 20) and unaffected (n = 20) individuals with or without a family history of melanoma. Data were analysed for potential thematic differences between risk groups, genders, and intentions to pursue genetic testing for melanoma risk. Overall, participants with a family history were in acceptance of their increased risk status and had developed ways of coping without major disruption to their daily lives. However, some participants expressed ambiguity regarding the causes of melanoma and the effectiveness of health behaviours such as sun protection. Major thematic patterns identified for those intending to pursue genetic testing were: negative emotional associations with melanoma; an emphasis on screening and sun avoidance, but not sun protection; and heightened perceptions of personal susceptibility to melanoma. In contrast, thematic patterns identified for those likely to decline testing were: ready access to stories of melanoma survival; and an emphasis on the causal role of sun exposure, whilst still believing that genetic factors may contribute to melanoma susceptibility. Compared to males, females reported a greater tendency to completely avoid the sun in order to reduce their melanoma risk. The data provide preliminary evidence for the importance of identifying misconceptions that may impede informed decision-making about genetic testing for melanoma risk.