Thematic analysis of illness narratives as an example of an approach to better understand the lived experience of women diagnosed with breast cancer in Spain

Abstract

Objective: To explore the lived experience of women diagnosed with breast cancer through the analysis of illness narratives, as an example of a narrative-based medicine approach.

Setting: Spain.

Participants: Nine narratives stemming from non-fiction books, and six from interviews through online platforms. All participants were cis women and their ages ranged between 34 and 60 years. The inclusion criteria were being a woman and having been diagnosed with and treated for breast cancer in Spain.

Results: The main topics that appeared on the analysis were: secondary effects of treatment, breast loss and scars, breast reconstruction, long-term effect of treatment, positive attitude, illness as learning and use of language. Although the results of this research are preliminary, it can be said that societal expectations quickly became a burden for the patients. Moreover, there was no common behavioural pattern among the participants and how they chose to manage their cancer journey. Choosing whether or not to hide their baldness, go through reconstructive surgery or fulfil the 'patient role' were options they wanted to review based on their own priorities, and not because of external impositions. Even though the women agreed with the benefits of having a positive attitude, they also asked for space to feel rage and sadness, not to be compared with others and to be heard with no haste, as well as to be accompanied beyond the treatment, and for their long-term effects of medications to be validated. The importance of the type of comments and language used is emphasised.

Conclusion: A narrative-based medicine approach enables us to incorporate the patient experience into the understanding of breast cancer. We encourage clinicians to be aware of the concepts of normality held by women, and to welcome different choices and different ways to experience illness.

Keywords: breast tumours; medical education & training; qualitative research.