Experiences of gestational trophoblastic disease: reconciling cancer, pregnancy and loss

Gestational trophoblastic diseases are rare conditions that span the worlds of reproduction and oncology. A lack of awareness surrounding gestational trophoblastic disease impacts patients, as they attempt to make sense of the condition whilst simultaneously undergoing diagnosis, monitoring and treatment.

For some patients, sense-making involves engagement with visual representations of GTD. These include biomedical diagrams illustrating its genetic causes. Patient accounts of these diagrams can provide alternative perspectives to research on GTD, as visual material can provoke feelings and responses that are not captured by traditional qualitative methods.

This project will involve collaborative work with patients, scientists and artists to reimagine the medical illustrations used to represent GTD and other forms of cancer. The project will provide participants with insight into biomedical explanations of cancerous conditions, and support them to develop creative ways of sharing illness experience.

Activities will comprise an initial creative workshop, ongoing artistic support and dissemination events. Through the workshop and artistic follow-up, patient participants will share experiences and produce their own visual representations of disease. The display and discussion of participants’ creations in an online gallery, and through a live digital event, will allow these to be shared with practitioners and relevant charities. This will enable patients’ stories to be heard in new ways and raise awareness of GTD, as well as informing the fieldwork and analysis conducted for the wider research.

This engagement work will involve continuous evaluation to ensure the activities have been enriching for patient participants, relevant stakeholders, and for the researcher’s skills.