The Oophorectomy decision explorer : a decision support intervention to facilitate deliberation and coping efforts in women at increased risk of ovarian cancer

Background: Traditionally, coping and decision making have been viewed as separate concepts. However, analysis of the role of emotions during decision making in healthcare suggests that coping with health threats, and associated emotions, should be viewed as an integral part of deliberation processes. This thesis reports on the development of a framework that merges deliberation and coping processes. Subsequently, this framework is operationalised by adapting it to specifically describe deliberations about risk-reducing salpingo-oophorectomy (RRSO) by women at increased genetic risk of ovarian cancer. Methods: A narrative review of the literature on decision making and coping theories informed the development of a novel framework that integrates theories from both fields. A multi-methods approach, which included a systematic literature search and qualitative methods, examined women’s decision making about RRSO and informed adaptation of the framework to specifically describe such decisions. The adapted framework was then used to develop a decision support intervention for women at increased risk of ovarian cancer in the UK. Incremental prototypes of the intervention were reviewed by a group of stakeholders and usability of the final prototype was tested using cognitive interviews. Results: The Coping in Deliberation (CODE) framework describes deliberations as multi-step appraisal and coping processes. The framework was successfully adapted to decisions about RRSO and used to develop a two part patient decision support intervention, consisting of a brief paper-based tool (Option Grid) and a longer website (the Oophorectomy Decision Explorer, OvDex). Conclusions: Emotions and coping are integral parts of deliberations in healthcare and the CODE framework, which acknowledges the importance of these concepts during deliberations, can be used to guide the development of patient decision support interventions. Future research should apply this framework to other healthcare decisions. The intervention developed in this thesis requires field testing to assess its impact before implementation in clinical practice.