Malpass, Alice and Mcguire, Coreen and Macnaughton, Jane (2022) '‘The body says it’: the difficulty of measuring and communicating sensations of breathlessness.', Medical humanities., 48 (1). pp. 63-75.
Breathlessness is a sensation affecting those living with chronic respiratory disease, obesity, heart disease and anxiety disorders. The Multidimensional Dyspnoea Profile is a respiratory questionnaire which attempts to measure the incommunicable different sensory qualities (and emotional responses) of breathlessness. Drawing on sensorial anthropology we take as our object of study the process of turning sensations into symptoms. We consider how shared cultural templates of ‘what counts as a symptom’ evolve, mediate and feed into the process of bodily sensations becoming a symptom. Our contribution to the field of sensorial anthropology, as an interdisciplinary collaboration between history, anthropology and the medical humanities, is to provide a critique of how biomedicine and cultures of clinical research have measured the multidimensional sensorial aspects of breathlessness. Using cognitive interviews of respiratory questionnaires with participants from the Breathe Easy groups in the UK, we give examples of how the wording used to describe sensations is often at odds with the language those living with breathlessness understand or use. They struggle to comprehend and map their bodily experience of sensations associated with breathlessness to the words on the respiratory questionnaire. We reflect on the alignment between cognitive interviewing as a method and anthropology as a disciplinary approach. We argue biomedicine brings with it a set of cultural assumptions about what it means to measure (and know) the sensorial breathless body in the context of the respiratory clinic (clinical research). We suggest the mismatch between the descriptions (and confusion) of those responding to the respiratory questionnaire items and those selecting the vocabularies in designing it may be symptomatic of a type of historical testimonial epistemic injustice, founded on the prioritisation of clinical expertise over expertise by experience.
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|Publisher Web site:||https://doi.org/10.1136/medhum-2019-011816|
|Publisher statement:||This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.|
|Date accepted:||29 September 2020|
|Date deposited:||03 February 2021|
|Date of first online publication:||28 January 2021|
|Date first made open access:||03 February 2021|
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