This is the second of a series of responses by Life of Breath to the British Lung Foundation’s Battle for Breath report. Join us on Twitter to discuss the issues, Thursday 24 November 2016, 12:00GMT #breathreport.
Researcher Rebecca Oxley considers what insights anthropology can offer:
The British Lung Foundation (BLF) recently published a three year study into the prevalence and impact of respiratory disease in the United Kingdom. They frame this report under the title ‘The Battle for Breath’. This phrase not only echoes the daily challenges of those who live with a lung condition, but delves deeper to evoke the collective effort required to improve how lung disease is understood and addressed in the United Kingdom. This is less the conventional war of two opposing forces (health versus disease), but more a push to raise awareness and implement change.
Yet a movement for lung health is also a movement against something, and the BLF wants to encourage future action to improve the alarming inequalities that contribute to the origins of lung disease or its prognosis. The Battle for Breath exposes how social deprivation can be strongly associated with the development of common lung diseases such as COPD, asthma and lung cancer. And while smoking is an important causative factor, 20% of COPD cases are not tobacco-related, and people living in the most deprived communities are, for example, more likely to have been exposed to workplace dusts and air pollution. Inequalities are also evident within the national health mandate. Why, for instance, is so much more invested in cardiovascular disease and non-respiratory cancer than lung disease despite its similar impact? The ‘battle’ is thus structural – a lack of awareness is not simply an outcome but can be a continually perpetuating force. The same could be said for the stigma associated with lung disease and breathlessness. Does the fact that lung disease is widely correlated with smoking, and thus perceived as the culpable result of an individual lifestyle ‘choice’ influence this cycle of invisibility?
The Battle for Breath report offers recommendations to achieve equal prioritisation. A key emphasis is on the accumulation and sharing of knowledge, improving communication, and raising awareness of lung disease and its contributory factors. A picture of the cultural forces that shape how lung disease is understood and lived, will be of crucial value. For example, the Life of Breath project is currently undertaking anthropological research into ‘structural stigma’ and how this is embodied within policies and populations. This will provide a significant insight into the factors that contribute to lung disease remaining invisible within those communities where breathlessness is considered a ‘normal’ part of ageing, and those where knowledge and/or understanding of COPD remains low.
Research into how culture shapes communication, including the ‘language of breathlessness’, will also be a key basis for devising strategies for transforming the respiratory landscape. Currently, disconnects between clinical and lay perspectives of how breathlessness is understood, assessed and defined, extends to the very words used to express this so-called ‘first vital symptom’ of lung disease . Recent studies have shown that different cultural, ethnic, and socio-economic backgrounds can influence how sensations of breathlessness are described, that these descriptions are often highly emotive, metaphorical, interchangeable, and rarely fit neatly into clinical categories [2-4]. Furthermore, the meanings of particular terms (such as ‘wheeze’) are highly subjective, informed by how sensations of breathlessness are experienced in different contexts [5, 6]. A rich, socially appropriate understanding of the language of breathlessness is thus necessary to improve early diagnosis of lung disease, the reporting of symptoms, the development of effective self-management methods, and most crucially – allowing the voices of those who live with a lung condition to be heard and further incorporated into policy and strategic engagement. The Life of Breath project will continue to work with stakeholders to bring further understanding of what breathlessness and lung disease means in the United Kingdom.
- Currow, D. C., Johnson, M. J. Distilling the essence of breathlessness: the first vital symptom. European Respiratory Journal 2015; 45(6), 1526-1528.
- Wainwright, M.J. Breathing and breathlessness: chronic obstructive pulmonary disease in Uruguay. Durham theses, Durham University, 2013.
- Vázquez-García, J.C., Balcázar-Cruz, C.A., Cervantes-Méndez, G., et al. Descriptors of breathlessness in Mexican Spanish. Archivos de Bronconeumologia 2006; 42(5): 211-217.
- Hardie, G.E., Janson, S., Warren, M., et al. Ethnic differences: word descriptors used by African-American and white asthma patients during induced bronchoconstriction. Chest 2000; 117(4): 935-943
- Houle, C.R., Howard Caldwell, C., Conrad, F.G., et al. Blowing the whistle: what do African Amercian adolescents with asthma and their caregivers understand by ‘wheeze’? Journal of Asthma 2010; 47(1): 26-32.
- Cane R., Pao, C., McKenzie, S. Understanding childhood asthma in focus groups: perspectives from mothers of different ethnic backgrounds. BMC Family Practice 2001; 2(4): 6pp.
Life of Breath is a five year (2015-20) research project funded by the Wellcome Trust. It is led jointly by Prof Jane Macnaughton (Durham University) and Prof Havi Carel (University of Bristol). This is the second of a series of responses to the British Lung Foundation’s Battle for Breath report. Join us on Twitter to discuss the issues, Thursday 24 November 2016, 12:00GMT #breathreport.