The project focuses on public discourse, clinical practice and lived experience of prevention in the context of increased risk of gynaecological cancer linked to a BRCA or Lynch syndrome genetic mutation.
The project is developing through 5 phases:
Phase 1:
Mapping discourses and societal influences
To understand how prevention for gynaecological cancers is articulated and understood in the public domain, we will collect and analyse relevant social media content from X, YouTube, Instagram, Facebook, Reddit, Bluesky and TikTok. This will allow us to map a range of discourses and stakeholders that get traction in the public domain, like advocates, institutions, legacy media, health professionals or other social media content creators. It will also allow us to to understand what might influence these discourses, like traditional narratives about women’s bodies and health and contemporary (social media) economies of attention and monetarisaton.
Phase 2:
Exploring clinical practices
To provide insight into how prevention for gynaecological cancers is recommended, in practice, we will develop a critical discourse analysis of relevant guidance produced by the seven NHS genomic hubs. We will also conduct semi-structured interviews with gynaecological oncologists, genetic counsellors and genetic consultants from each hub. This will allow us to move from how risk-reducing surgeries are (or aren’t) discussed in the public domain (Phase 1) to how they are articulated and performed in the clinic.
Phase 3:
Understanding lived experiences
To understand how carriers of hereditary cancer syndromes experience discourses (Phase 1), guidance and clinical encounters (Phase 2) related to preventing gynaecological cancer, we will interview 40 BRCA and Lynch syndrome genetic mutation carriers. We will ask them to produce and share images that can help them narrate their experience and that might help others make sense of it (this is usually referred to as “photovoice”) .
Phase 4:
Showcasing what matters to carriers
To enhance visibility of lived experiences of gynaecological cancer prevention in the context of hereditary cancer syndromes, we will organise an exhibition showcasing the images produced by our participants (Phase 3). We will also produce a digital animation presenting a range of first-person stories of coping with gynaecological cancer risk.
Phase 5:
Shaping inclusive communication in and about clinical practice
To shape inclusive communication in/about clinical practice in the context of gynaecological cancer prevention, we will organise a workshop with our project partners and advisory board which will inform a final report with practice guidance for the NHS genomic hubs. To ensure that patient voices are fully represented, we will hold a separate meeting with a patients-only panel to co-revise the final version of the report.