Consumer experiences of shame in clinical encounters for breast cancer treatment "Who do you think you are- Angelina Jolie?"

Background and purpose: Shame is a powerful negative emotion that has the potential to affect health. Due to the intimate nature of breast cancer treatment and its impact on body image, it is hypothesised that shame may be experienced during treatment. The aim of this study was to explore consumer shame experiences related to clinical encounters with health professionals during treatment for breast cancer. Methods: The project was conducted in partnership with Breast Cancer Network Australia (BCNA), Australia's largest breast cancer consumer organisation. Participants were members of the BCNA, and all had a lived experience of breast cancer. They were invited to anonymously share their stories of shame through an online survey. Using qualitative methodology, the stories were examined, and themes identified. The consumer representative participated in the research team, advising on wording of questions and interpretation of quotes. Results: Stories were contributed by 38 participants. Most (n=28, 73.7%) were >5 years post-diagnosis. The experiences were set in variety of clinical settings (consulting rooms, wards, operating theatres, radiotherapy departments). They involved a range of health professionals (oncologists, surgeons, nurses, radiation therapists, psychologists.) Five themes were identified: (1) Body shame (sub-themes: Naked/vulnerable and Weight), (2) Communication (subthemes: Lack of compassion/ impersonal manner and not listening), (3) Being blamed (subthemes: diagnosis and complications), (4) Feeling unworthy (subthemes: Burden to staff and Unworthy of care), (5) Judgement for treatment choices. The presentation will discuss these themes and will present quotes from participants to demonstrate the themes and subthemes. Conclusions: Shame can be experienced in a range of situations, from scrutiny of the naked body to comments from health professionals. These experiences can be profound and long-lasting, and they can negatively impact treatment choices and therapeutic relationships. These findings can inform strategies to support consumers and educate health professionals with the aim of reducing harm related to cancer treatment.