Recounting the untold stories of breast cancer

Abstract: Breast cancer remains a prevalent disease in women worldwide. Though significant advancements in the standard of care for breast cancer have contributed to improved patient survival and quality of life, a breast cancer diagnosis and subsequent treatment interventions have a long-lasting impact on patients’ lived experiences. A high-quality healthcare system uses a patient-centred approach to healthcare, with patient engagement being a central pillar in the delivery of patient-centred care.
Here, we showcase a patient and stakeholder engagement workshop series that we delivered in 2022 with the goal of promoting dialogue between patients with breast cancer, breast cancer researchers and the clinician involved in their care. We present the collaborative learning process and outcomes from this patient engagement workshop series as a community-academic partnership in which the topics were raising awareness of the patient lived experience following a breast cancer diagnosis, breast cancer research activities undertaken by researchers, and the approach used by multidisciplinary healthcare teams in the management of breast cancer using storytelling as a tool. We used an iterative approach to narrative development and the use of multiple media formats to capture patient stories, that included use of object memories, storytelling prompt cards and open-mic audio format to capture patient stories from diagnosis to treatment, and remission. Here, we report the concepts underpinning the workshop format as well as key findings emerging from patient narratives.
Key themes emerging from the qualitative analysis of audio recordings included common public misconceptions about a breast cancer diagnosis, the importance of self-advocacy in patient decision making about treatment, and the complex emotional journey experienced by patients diagnosed with breast cancer.
Understanding the patient perspective of a breast cancer diagnosis and subsequent experiences can support healthcare professionals in developing an empathetic approach to sharing information, and involving patients in shared decision making about their healthcare. While a breast cancer diagnosis can be overwhelming from a physical, social, emotional and cognitive perspective, providing patients with information at appropriate times during their diagnosis and treatment may lead to better quality of life outcomes. Storytelling as a patient engagement approach can build patient trust in researchers, ensuring that as key stakeholders they are involved in the process of research.

Bio: Dr Zahra Rattray, a senior lecturer and breast cancer researcher based at the Strathclyde Institute of Pharmacy and Biomedical Sciences (SIPBS) was the lead academic on the initiative. The team was comprised of SIPBS colleagues Dr Margaret Cunningham, Dr Nicholas Rattray and Dr Susan Chalmers; Mrs Alison Lannigan, a consultant breast surgeon from NHS Lanarkshire; Allison Galbraith (Scottish Storytelling Centre) and Dr Yvonne McFadden (co-director of the Scottish Oral History Centre). The team held a three-part storytelling workshop to learn more about the public’s experiences of breast cancer and promote awareness of breast cancer via the medium of oral history and storytelling. A total of 18 breast cancer patients engaged in the workshop series as part of a collaborative effort to share their untold stories of breast cancer. The stories were curated and analysed by two MPharm students, Morag Ross and Meghan Hill, as part of their final year research project.