Consumer experiences of shame in clinical encounters for breast cancer treatment. “Who do you think you are– Angelina Jolie?”

BACKGROUND: 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 shame experiences related to clinical encounters for breast cancer treatment. METHODS: People with a lived experience of breast cancer were invited to anonymously share their stories of shame through an online survey. Using qualitative methodology, the stories were examined, and themes identified. PARTICIPANTS: Participants were members of the consumer organisation Breast Cancer Network Australia. RESULTS: Stories were contributed by 38 participants. Most (n = 28, 73.7 %) were >5 years post-diagnosis. Shame was experienced in a range of clinical settings (consulting rooms, wards, operating theatres, radiotherapy departments). They involved a different 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. CONCLUSIONS: Shame can be experienced in a range of situations, from scrutiny of the naked body to comments from health professionals. The impact of these experiences is profound, and the feelings of shame are carried for many years. These findings can inform strategies to support consumers and educate health professionals with the aim of reducing harm related to cancer treatment.