Consumer experiences of shame in clinical encounters for breast cancer treatment who do you think you are– Angelina Jolie?

• Published in: Breast (Edinburgh) Vol. 72; p. 103587
• Main Authors: Brennan, M.E., Bell, K., Hamid, G., Gilchrist, J., Gillingham, J.
• Format: Journal Article
• Language: English
• Published: Elsevier Ltd 01.12.2023; Elsevier
• Subjects: Breast cancer; Original; Patient centred care; Psychology; Psychooncology; Shame; Breast cancer; Shame; Psychology; Psychooncology; Patient centred care
• ISSN: 0960-9776; 1532-3080
• DOI: 10.1016/j.breast.2023.103587

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. 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 were members of the consumer organisation Breast Cancer Network Australia. Stories were contributed by 38 participants. Most (n = 28, 73.7 %) were >5 years post-diagnosis. The experiences were set in range 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. 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. •Shame can be experienced by consumers in interactions with health professionals.•Consumers described experiences of shame related to breast cancer treatment.•Themes: body shame, poor communication, feeling blamed, unworthy or judged.•Shame can negatively impact treatment choices and therapeutic relationships.•These findings can help enhance care by raising awareness of shame its triggers.