Life of Breath – The perspective of the humanities on COVID-19

This post was written by Professor  Havi Carel (University of Bristol) and Professor Jane Macnaughton (Durham University)

Editor Note: COVID-19, with its wide ranging impacts, has opened up an opportunity to demonstrate the value of scholarly analysis from a wide range of perspectives.  The use of an Arts and Humanities lens helps reveal unexamined areas of interest and importance that would otherwise remain blindspots in our understanding of the health, disease and societal impacts. This piece not only highlights beneficial arts and science collaborations (Singing for Lung Health) but also shows the power of reframing concepts in new ways, which can affect how we approach them.

For the last five years (2015-2020) we have been leading a Wellcome-funded project, the Life of Breath  https://lifeofbreath.org/.  Our aim has been to explore the experience of breathing and breathlessness from an interdisciplinary medical humanities perspective, including insights and knowledge from the humanities, social science and the arts.  It is astonishing that just as we submitted our end of project report, the whole world has been taken over by the COVID-19 pandemic and, with it, the fear of breathlessness. This is all the more strange because a major theme of our project was the invisibility of breath: how as healthy individuals we take breathing for granted; how hidden are those who live with the daily fear of death that accompanies severe breathlessness; and how trustingly we rely on the air around us.

Although breathlessness is central to the diagnosis of COVID-19, and also a sign of disease progression, it is still not highly visible in the media, despite being a pervasive symptom of severe disease.  Many of our pressing current concerns are more tangential: we are concerned about the curbs on personal freedom, about accessing food, and most of all about the health and wellbeing of our loved ones. Why are we not trying to understand the experience of breathlessness better?

Our research sheds light on this strange avoidance.  Breath is essential to life and any threat to it is too frightening to be able to comprehend, let alone express.  Our deepest and most atavistic fears relate to suffocation, drowning, or being unable to breathe.  Breathlessness itself, we have found, is a complex experience that is difficult to articulate, and clinical language can obstruct understanding and prevent the update of suitable management. https://lifeofbreath.org/2019/07/the-meaning-of-the-name-pulmonary-rehabilitation-oxley-et-al-2019/

Much of our work explored how arts and humanities approaches can be used to support and alleviate the suffering associated with chronic breathlessness.  Our research showed that encouraging expression of what breathlessness feels like can be aided by involvement with the arts, for example, through the ‘letter to my breath’ workshops our project designed and ran (https://lifeofbreath.org/2019/01/dear-breath-using-story-structure-to-understand-the-value-of-letter-writing-for-those-living-with-breathlessness-penny-malpass-2019/)

Outreach work from our Catch your Breath exhibition showed that poetry unleashes ideas and metaphors that enable the experience of breathlessness to be not only expressed to others but also understood by the breathless person themselves.  Our ‘Singing for Lung Health’ groups provided important evidence that learning basic diaphragm control and simple singing exercises can increase confidence and sense of control.

Philosophy has also been used in our work to develop a framework for understanding breathlessness more broadly, as a lived experience, rather than as a medical symptom.

See: https://lifeofbreath.org/2016/10/phenomenology-of-illness-by-havi-carel/

We have also published policy recommendations on how breathlessness could be better managed, especially in end of life care:

http://www.bristol.ac.uk/policybristol/policy-briefings/life-of-breath/

Approaches to management can be enhanced if we take a step away from clinical contexts and instead step onto the dance floor to improve exercise capacity.

http://www.bristol.ac.uk/policybristol/policy-briefings/life-of-breath/

The Life of Breath website provides resources based on our research to support people with breathlessness or who are feeling anxious during this difficult time.  We hope you find them useful.

https://lifeofbreath.org/2020/03/breathing-in-isolation-support-with-anxiety-breathlessness-during-lockdown/

https://lifeofbreath.org/2020/03/dance-easy-breathe-better-and-feel-good/

This post was originally published by the International Science Council. You can read the original article here.

Covid-19 in South Africa: The Long Walk to Freedom Continues

Angelique Retief (PhD student, School of Policy Studies, University of Bristol)

The large number of deaths of BAME people due to the coronavirus has quickly disproved the claim that the pandemic is a ‘great equaliser’ and has instead brought to the fore the many social ills in society. As most determinants of health are socially created, it logically follows then that the fact that socioeconomic deprivation disproportionately affects BAME people will be a precursor to the impact of the virus on those communities. With living space, gardens, and local areas (or the lack thereof) dictating our wellbeing, the gap between the rich and the poor has never been more obvious. The coronavirus will therefore not be felt equally and – compounded by the already profound challenges to wellbeing in non-OECD countries – will only serve to further entrench existing racial and economic disparities.

Racial disparities have a history. The product of centuries of colonialism, apartheid and racial exclusion, South Africa’s welfare system has struggled to provide the freedoms promised in 1994. It has been 26 years since South Africa’s first democratic election, and it is still one of the world’s most unequal societies. With unemployment levels at a decade high of 30% (reaching 40% in some areas), poor levels of basic service provision (StatsSA, 2018), over 2 million AIDS orphans, and the highest level of people with HIV of any country (UNAIDS, 2018), the impacts of Covid-19 will be acutely felt in this part of the world.

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Coronavirus: flying in fruit pickers from countries in lockdown is dangerous for everyone

Dr Denny Pencheva
Senior Teaching Associate, Migration Studies and Politics, University of Bristol

In the wake of the COVID-19 pandemic, major agricultural companies and charities have chartered flights to urgently bring in tens of thousands of Bulgarian and Romanian agricultural workers. Flights have headed to places like Karlsruhe and Düsseldorf in Germany, along with Essex and the Midlands in the UK.

This comes after farmers in both countries warned there is a real risk that thousands of tons of produce might be left to rot – further affecting food supply chains – if vacancies for agricultural workers go unfilled.

The excessive demand for food during lockdown has meant that farm labourers are classed as key workers, which is why they are being flown to the UK and other Western European countries.

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What impact will COVID-19 have on drug markets and users?

Josh Torrance (PhD student and Assistant Teacher, School for Policy Studies)

Much of this research is based on personal emails and conversations with the police and other agencies. As such, not all of the facts presented are referenceable.

Covid-19 will present a major challenge to both drug users and drug treatment agencies over the coming months. There are 320,000 problematic drug users in the UK, many of whom have weaker immune systems than the general public – and therefore a diminished chance of recovery from the virus. People who inject drugs and street homeless communities are at particular risk; viral infections spread quickly through these populations. On the face of it, the pandemic might seem like a fantastic opportunity for problematic users to become drug-free, but the reality is much more complex.

A used needle left on grass.

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British Somalis and FGM: ‘everybody is a suspect – you are guilty until proven innocent’

Saffron KarlsenSenior Lecturer in Social Research, University of Bristol

Christina PantazisProfessor of Zemiology, University of Bristol

Magda MogilnickaResearch Associate in the School of Sociology, Politics and International Studies, University of Bristol

Natasha CarverLecturer in International Criminology, University of Bristol

Female Genital Mutilation (FGM), whereby the female genitals are deliberately injured or changed for non-medical reasons, is considered by the UN to be a “global concern”.

International organisations often report statistical evidence that 98% of women and girls in Somalia/Somaliland have undergone FGM.

Because of this international evidence, girls born to Somali parents living in the UK are considered to be at high risk of experiencing FGM. Yet research shows that attitudes towards FGM change dramatically following migration and therefore girls in the UK are unlikely to be put through this procedure.

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Do development indicators underlie global variation in the number of young people injecting drugs?

Dr Lindsey Hines, Sir Henry Wellcome Postdoctoral Fellow in The Centre for Academic Mental Health & the Integrative Epidemiology Unit, University of Bristol

Dr Adam Trickey, Senior Research Associate in Population Health Sciences, University of Bristol

Injecting drug use is a global issue: around the world an estimated 15.6 million people inject psychoactive drugs. People who inject drugs tend to begin doing so in adolescence, and countries that have larger numbers of adolescents who inject drugs may be at risk of emerging epidemic s of blood borne viruses unless they take urgent action. We mapped the global differences in the proportion of adolescents who inject drugs, but found that we may be missing the vital data we need to protect the lives of vulnerable young people. If we want to prevent HIV, hepatitis C, and overdose from sweeping through a new generation of adolescents we urgently need many countries to scale up harm reduction interventions, and to collect accurate which can inform public health and policy. Continue reading

Baby box: child welfare experts say use of sleep boxes could potentially put infants’ lives at risk

Authors:
Debbie Watson, Professor in Child and Family Welfare, University of Bristol
Helen Ball, Professor of Anthropology and Director of the Parent-Infant Sleep Lab, Durham University
Jim Reid, Senior Lecturer, Department of Education and Community Studies, University of Huddersfield
Pete Blair, Professor of Epidemiology and Statistics, University of Bristol

The baby box in Finland is embedded as part of the maternity system. Kela

Having a baby can be expensive. So it’s maybe not surprising that many retailers around the world have cottoned on to the success of Finland’s baby boxes – a package aimed to set up new parents and their bundle of joy. The Finnish boxes include baby clothing, sleep items, hygiene products and a parenting guide –- as well as a “sleep space” for the baby.

Many retailers around the world are now offering similar boxes for expectant parents. Indeed, research conducted at the University of Tampere in Finland suggests there are variants in over 60 countries. This includes Scotland’s baby box scheme – with all newborn babies getting a free baby box from the Scottish government.

But as a group of child welfare experts, we believe imitations of the Finnish boxes could be placing babies at risk. This is because it has become common to believe that if babies sleep in these boxes, it will help protect them from sudden infant death syndrome (SIDS). Unfortunately, the research does not back this up. Continue reading

Taking paracetamol during pregnancy may affect the child’s behaviour in early years

Aleksandra Gigowska/Shutterstock

Jean Golding, University of Bristol

In the early 1960s, thousands of babies were born with malformed limbs as a result of their mother taking thalidomide – a drug used to treat morning sickness. The tragedy rocked the medical establishment and made doctors wonder what other drugs might have foetus-harming effects. Continue reading

Why GPs and patients need to talk more openly about death

Hospitals have a role to play too.
Navalnyi/Shutterstock

Lucy Pocock, University of Bristol

Dealing with death is part of the job description for all doctors. For those working in general practice, this often means planning ahead, with GPs encouraged to keep a register of patients thought to be in the last year of their life. Continue reading

Remembering Why We Ride – putting a positive spin on the story of cycling

Before Channel 5 aired their broadcast Cyclists: Scourge of the Roads?, described by The Guardian’s Peter Walker as ‘the worst, most scaremongering, inaccurate, downright irresponsible programme on cycling’, I’d already conducted a brief analysis of tabloid coverage of cycling to confirm what I and many other cyclists have felt for a long time: that we get a lot of bad press. Continue reading