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Researching a painful taboo in healthcare

Through work such as the Shame and Medicine project we have become more aware of the significant but silent impact shame can have on healthcare. Feeling shame or embarrassment about our health problems and difficulties coping with them, or even our inability to provide treatment or support for someone else’s difficulties can make interactions between healthcare providers and clients awkward and ineffective. Chronic shame can undermine wellbeing and resilience. However, despite the powerful effects of shame, it is probably rare that someone would acknowledge shame in a healthcare setting. Speaking about shame not only exposes what we are ashamed of but can feel like a shameful admission of our inability to overcome irrational feelings. Witnessing the shame of others is uncomfortable and embarrassing. Therefore, we often manage shame by either withdrawing, or behaving as if shame is not something we feel, or by becoming inexplicably hostile and defensive.

Research which lifts the lid on shame is therefore important for facilitating healthcare which reduces shame, by showing us where and how shame may arise. As well as helping to avoid shame, this also sets the scene for shame to be acknowledged. My own and others’ research suggests that speaking about shame, along with a shared normalisation of what initially appears to be shameful, and receiving empathy and validation from others are important for helping people to move on from shaming experiences (e.g., Brown, 2007; Leeming & Boyle, 2013).

However, if we are to conduct meaningful research on lived experiences of shame, we need to give serious consideration to how we can enable participants to share painful and taboo experiences without re-shaming them or triggering defensiveness. Alternatively, by trying to make discussion of shameful experiences palatable, we risk glossing over someone’s experiences in a superficial manner. Fortunately, a number of recent studies suggest that some people are willing to share difficult emotions with researchers, in the right context.

One context that may be helpful is anonymity for research participants, where their identity is not even revealed to the researcher (e.g., Leeming & Boyle, 2013). However, this is not a panacea, particularly if the anonymous method prevents live interaction between the researcher and participant (e.g., open-ended questionnaire, diary).  Anonymity may, to some extent, protect participants from feeling shame before a researcher, but it also acts as a barrier between participant and researcher, so that the researcher gains less understanding of the all-important, but now hidden, context which has shaped particular shame experiences. Without live interaction there is no opportunity for careful probing of initial responses and development of shared understanding. Opportunities to deepen exploration are particularly important when the experiences being explored are those which participants have learned to gloss over as taboo. I also wonder how anonymous methods are perceived by participants. Could an emphasis on total anonymity reinforce the idea that shame should be kept hidden?

The obvious alternative if exploring lived experiences of illness and healthcare is interviewing, particularly when conducting research on the experiences of participants whose voices are not often heard. Qualitative researchers have successfully conducted sensitive interviews on a wide range of topics that are difficult to speak about, including shame. Whilst it would be naïve to suggest that interviews provide a transparent ‘window’ to the participant’s inner experiences, many research studies have produced thought-provoking and new perspectives on phenomena through interviews. However, until I tried interviewing participants about shame and stigma, I had not fully appreciated how difficult it can be to maintain respectful curiosity, without risking exploitative voyeurism, when you do not have a prior relationship with the participant. It is difficult to anticipate the language that will feel appropriate for discussing shame – not everyone is comfortable with the S-word. Researchers may then overcompensate and collude in avoiding discussion of shameful issues, partly because this reminds us of our own shame and shameful experiences and partly because it may feel persecutory to explore more painful aspects of someone’s experiences. As Erving Goffman (1967) first suggested many years ago, we are socialised into avoiding shame and embarrassment wherever we can, or pretending that they do not exist.

Skilled research interviewers, attuned to some of the gestures that are suggestive of shame (e.g., avoidance of eye contact, hands to the face) and spoken shame-cues (e.g., fragmented sentences, uncertainty, vagueness, defensiveness) might overcome some of these difficulties. They may be able to create an environment of acceptance, where the participant is less likely to feel judged. This is especially likely in studies which engage with participants at length, developing relationships over serial interviews, or through the researcher becoming embedded in a setting using ethnographic methods (e.g., Gibson, 2019). However, many participants are still likely to be cautious about what they reveal, and we should be mindful that the demands of constructing a positive identity as an interviewee may outweigh the desire to convey a full but shameful narrative.

Careful preparation for fieldwork in this area will always be important. But, before rushing into fieldwork, we can also consider other seams of data already available to us which may provide insight into the differences between shame-inducing and respectful healthcare. Understanding the potential for shame is just as important as revealing lived experiences of shame. For example, we recently re-examined prior research on women’s accounts of receiving support with breastfeeding, which had not originally been concerned with emotion. A new focus on phenomena associated with self-conscious emotions within the data (e.g., self-evaluation, exposure, justification, sense of judgement or validation) suggested that avoidance of shame was highly relevant to understanding how women engaged with healthcare providers (Leeming, Marshall & Hinsliff, 2022).

Casting light on the hidden toll of shame in healthcare is important. However, researchers need to consider very carefully how they might do this and employ a range of methods that take account of the tendency for both us and our participants to turn away from shame, and which also allow exploration of shame that hovers on the periphery of awareness.


Dawn Leeming – Principal lecturer in Psychology, University of Huddersfield


Works Cited

Brown, B. (2007). I thought it was just me (but it isn’t): Making the journey from ‘What will people think?’ to ‘I am enough’. New York: Gotham Books.

Gibson, M. (2019). Pride & shame in child and family social work: Emotions and the search for humane practice. Bristol: Policy Press.

Goffman, E. (1967). Interaction ritual: Essays on Face-to-Face Behaviour. NY: Anchor.

Leeming, D. & Boyle, M. (2013). Managing shame: an interpersonal perspective. British Journal of Social Psychology, 52(1): 140-160.

Leeming, D., Marshall J. & Hinsliff, S. (2022). Self-conscious emotions and breastfeeding support: A focused synthesis of UK qualitative research. Maternal and Child Nutrition, 18, 1, 23 p., e13270.

10th January 2023

Photo by Brandon Zack on Unsplash

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