Understanding distress in women at increased risk of breast cancer: the effects of experience of breast cancer in the family and illness perceptions

Abstract

The aim of the current work was to improve understanding of factors associated with distress in women at increased risk of breast cancer because of their family history of the disease. Levels of distress have been described in this population although few studies have attempted to investigate causes of variation in distress. A number of anecdotal reports and qualitative studies have highlighted that women's experiences of breast cancer in their family is related to distress. The first study in this thesis aimed to assess women's experiences in a quantitative manner and demonstrated associations with general and cancer specific distress.Applying theoretical perspectives from health psychology enables us to consider how these experiences may influence psychological response to genetic risk. Using Leventhal's SelfRegulatory Model (SRM) (Leventhal et al. 1980) a theoretical model was developed for use in this thesis. This model proposed that perceptions of breast cancer mediate the impact of experiences of the disease in the family on psychological well-being. A large cross-sectional questionnaire study of women at increased risk of breast cancer and women in the general population was conducted in order to systematically explore this model. As there were no measures available to assess perceptions of breast cancer in healthy populations an existing generic measure was adapted and evaluated in the current samples. The mediation model was then systematically explored in a series of analyses.The results confirmed a number ofhypotheses. Women at increased risk of breast cancer showed higher levels of cancer specific distress and held different perceptions ofbreast cancer than women with no experience of the disease. Analysis indicated that experience of breast cancer in the family was associated with levels of distress and perceptions of the disease and that both experience ofbreast cancer and illness perceptions predicted distress in women at increased risk. Some support for the mediation model was found.This thesis has shown that the SRM can be successfully applied to women at increased risk of breast cancer. Further work is required to explore additional aspects xvi of illness perceptions in healthy individuals at increased risk of disease and to test the causality of relations revealed in this thesis. Utilising theoretical models to understand response to risk in this clinical context is likely to provide implications for the development and evaluation of interventions aimed at improving psychological well-being

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