Influences on genetic testing and prophylactic surgical decision making of women at risk of hereditary breast and ovarian cancers.
Creators: name: Wherry, Mark S.
Publisher: name: University of Surrey
Year: 2020

description: Women with a family history of breast or ovarian cancers may be eligible for genetic testing to see if they have a genetic mutation that increases their risk of either disease. Two prevalent mutations increasing breast and ovarian cancer risks are BRCA1 and BRCA2. Women carrying a BRCA mutation may consider risk-reducing breast and or ovarian surgeries to reduce their risk of future disease. When faced with these decisions, women often turn to health professionals for support, but they also access their wider support network that includes partners, family and friends. Most previous research of these decisions has focused on the patient-doctor relationship. Understanding how social influences impact women’s decisions is integral to the effective support of those accessing genetic services. With four empirical studies using both qualitative and quantitative methods this thesis aimed to develop a greater understanding of the distal and proximal social influences on women’s decisions to have genetic testing and risk-reducing surgery. In Study 1, a content analysis was used to examine UK broadsheet and tabloid newspapers’ coverage of genetic testing and risk-reducing surgery. Four newspapers were coded, and the results showed that newspapers supported testing but were nuanced in their coverage of the value of surgery, with this discussion played out through coverage of celebrity experiences. The newspapers presented the decisions as primarily medical decisions taken by rational decision makers. Studies 2 and 3 then used a qualitative approach to examine the influence non-health professionals on decision makers’ testing and surgical decisions. Study 2 involved interviews with sixteen women and showed that familial influences, appealing to both rational and emotional decision-making processes, were common in women’s testing decision which many women saw as a minor decision compared to the decision to have surgery. Study 3 involved interviews with ten female BRCA carriers and showed that firstly, carriers valued peer experiences, and secondly, carriers’ self-concept influenced dual decision-making processes. In particular, the results from these studies found, firstly, that participants used both rational and emotional decision making but were more inclined to emotional decision making when they adopted a relational identity, such as sister, which anchored them to emotive familial cancer experiences. Secondly, participants valued the support of women who had experienced like surgery, support they perceived of as neutral and of having added value. This was often epitomised in a ‘show and tell’ event whereby women meet with other women who have been through similar experiences. This qualitative work therefore highlighted the role of both rational and emotional decision-making processes. It also emphasised the impact of peer support, specifically the ‘show and tell’ experience. To further examine the role of ‘show and tell’ in the decision-making process study 4, used a quantitative design to explore differences from before to after a ‘show and tell’ intervention. Due to recruitment problems this study used a retrospective quantitative design, and an online survey with 29 women. The results showed increases in participants’ intentions to have mastectomy after their show and tell experience and a reduction in decisional conflict. Overall, this thesis demonstrates that genetic testing and risk-reducing surgical decision making occurs, at the distal level, in a social environment generally positive to towards testing, where women are encouraged to be rational decision-makers. At the proximal level, decision makers are influenced by family and peers with shared cancer or decision-making experiences. The dual processes of rational and emotional decision-making are influenced by the decision makers’ individual and relational identities and this relationship between self-concept and dual process decision making is illustrated in the concluding model of this thesis.