Where are we going? What are our aims? Are we getting there?
This exhibition was designed to give insight into what it is like living with breathlessness, with the use of strong images and personal narratives. In the video below I describe how we aim to bring breathlessness out into the open and help people find a way of talking about it.
When we co-created this exhibition in 2019 we intended to take it to GP practices, shopping centres and festivals-anywhere where we might be able to engage the public with what it is like to live with breathlessness. In the months that followed we did indeed make many such visits and the exhibition was well received by the public. Wherever we went we offered possibilities for open conversation about this often hidden problem. The picture at the beginning of this blog post shows June talking with someone who visited our exhibition at Trinity Indoor Market, Hull as part of the ESRC Festival of Social Sciences.
In addition to public events we were also invited to take the exhibition to a number of local clinical training workshops and a seminar for medical students. Here are some of the things attendees said:
I am more aware of the difficulties it causes for the breathless person and their family.
It really makes you think about breathlessness in everyday life situations. Powerful!
These images help people without breathlessness visualise and understand how people with breathlessness really feel.
In future I will see things that may have seemed small as more important, as it is the little and normal things that are important to people…
Now in these pandemic times we have turned to engaging people with the exhibition online through Twitter and at conferences for clinicians. In 2020 the exhibition was shown at the online conferences of the European Association for Palliative Care and the Primary Care Respiratory Society. Here is some of the feedback we received:
I have downloaded your guide to living well with breathlessness and will use it to enhance the work we are doing on our breathlessness pathway.
I think these images are a fascinating representation of patient experiences. I’m a physio in a community respiratory team and I think so many of my patients would absolutely relate to them!
It is very engaging and very powerful. AMAZING WORK. I will be sharing it with my patients and my colleagues.
I would say the sounds and images reflect what it is like to have chronic breathlessness, and closely match my experiences of looking after people who are breathless.
Amazing and eye-opening work!. Beautiful AND informative!
Recently I wanted to see if there had been any lasting impact on the clinical practice of attendees so I surveyed some of the clinicians who had seen our exhibition in its various forms. Here’s what they said they have done since:
I ask more about the difficulties it causes for the breathless person and their family.
I have used the Living Well with Breathlessness guide in my clinic.
I give the guide out to patients regularly and have tailored it to our local area.
The booklet summarises many of the interventions I use so it helps people remember once they get home.
It helps patients in seeing how they can help themselves and that how they feel is a normal reaction to their breathlessness.
I have passed on the website details. This has been well received.
For information to give to people you know download our Guide to living well with breathlessness or a leaflet on Managing breathlessness at home during Covid-19.
The impact of the exhibition has been good thus far and in future I hope to do research working with patients, carers, clinicians and educators on how these and other creative representations of breathlessness can be used in education and in clinical encounters. For now, if you know of any conferences or training events that may wish to host our exhibition do get in touch!