Ann Hutchinson and Miriam Johnson from the Hull York Medical School, University of Hull, United Kingdom, describe how they are using a multimedia exhibition to help people to live well with breathlessness. The exhibition was held during the UK’s recent annual awareness event focusing on lung health.
Living with breathlessness can be very difficult for patients, their friends and family members. Doing everyday things like cleaning and going shopping take a lot of effort. People may need help from others which can make them feel frustrated and down because they can’t do everything that they used to do.
“The emotional thing is extremely, extremely important. You don’t get the understanding … you can just like get caught up in a downward spiral and you end up in this little place all by yourself…”
Breathlessness also makes people worried or frightened. At these times they need support from clinicians.
“I am all the time worried – worried when this breathing will attack me again.”
And it can be hard for family members too.
“It ain’t just me; it’s my family as well, they have to go through it as well, people tend to forget them… they just think about the person whose got the illness, not the people they’ve got around them and it does affect them big time, they get emotional, they’re frightened.”
Moreover, our research shows that in addition to making difficulties in people’s everyday lives, breathlessness is associated with presentation to the emergency department, causing as many as 20 per cent of presentations by ambulance. We recently presented this at the 16thWorld Congress of the European Association for Palliative Care, where it won a prize for being one of the three best poster abstracts in the breathlessness category. (1)
Bringing Breathlessness into View – a multimedia exhibition
Prompted by our research, we wanted to do more to raise awareness of breathlessness and how to cope with it. Working with people who experience daily breathlessness and local artists, we created a multimedia exhibition to be held during the UK’s recent annual awareness event focusing on lung health.
The exhibition, ‘Bringing Breathlessness into View’, has striking images and engaging sound recordings to help people understand what it is like to live with breathlessness. It was funded by the University of Hull and supported by the British Lung Foundation and National Health Service Hull Clinical Commissioning Group.
Living with breathlessness is difficult, but it’s possible to keep going…
These three images from the exhibition express both how difficult it is to live with breathlessness, but also that it is possible to keep on going.
There are many ways that patients can cope with breathlessness. At the exhibition, we gave out copies of our booklet for patients and carers with practical suggestions to help them manage their breathlessness day to day. (The booklet, which incorporates information from the Cambridge Breathlessness Intervention Service, can be downloaded from the Hull York Medical School website). Further information is available from the British Lung Foundation website.
Many people find there are ways to cope with their breathlessness and have good lives. As one person said:
“I’ve sort of changed my life. You can’t do the things you used to do, so you’ve got to say ‘well, okay, what can I do?’ and do it.”
Clinicians can provide support and help people manage their breathlessness better
By focusing on breathlessness as a target for treatment in its own right, clinicians can support patients to adopt better self-management techniques so they can live well with breathlessness.
“She has got me organised and now I understand how the disease works. As a result, I have had a good summer. It makes me feel more resilient.”
“Breathlessness is a symptom of a wide range of medical conditions and it can be particularly challenging for people who live with it. It’s wonderful to see how art is helping to bring the voices of local people to light and share their stories in a way that both educates and inspires others. Breathlessness can be difficult, but there are ways to effectively manage the symptom and continue to lead a full life. It has been enlightening to support the recent research from the Hull York Medical School and we hope that their findings, along with the insights gleaned from this exhibition, will help our clinicians offer the best care possible.”
- Download the EAPC World Congress Book of Abstracts to read the abstract for Ann and Miriam’s poster, number PO 038: ‘Understanding how decisions to present to the emergency department are made by patients with acute-on-chronic breathlessness, their family carer and clinician’ Hutchinson A, Barbetta C, Galvin K, Twiddy M, Johnson M. And view their ePoster here (and many others from the 16th EAPC World Congress).
Find out more…
Dr Ann Hutchinson and Prof Miriam Johnson are researchers at the Wolfson Palliative Care Research Centre at the Hull York Medical School. Follow them both on Twitter @AHutchinsonHull and @MJJohnson_HYMS To read more about their research and how clinicians can help people live well with breathlessness, see their BJGP article.