Everyday Stories of Breathing and Ventilation

• Do you, or have you at some point, needed ventilation to support your breathing? You might refer to this as non-invasive ventilation (NIV), home mechanical ventilation (HMV), long term ventilation etc. and you might use a BIPAP, CPAP or VPAP.

• Do you want to share your experiences as someone who uses, or has used, ventilation?

We are looking for disabled and chronically ill adults in the UK to take part in a series of creative photographic storytelling workshops. We would like to speak to people who regularly use long-term ventilation to help with their breathing. We are interested in speaking to people who receive non-invasive ventilation (NIV) via a mask, and to people who have a tracheostomy. 

The aim of these workshops is to produce an accessible exhibition of photos and captions. This will be hosted in person at the Florence Nightingale Museum in London in 2027, and available online. We are interested in hearing about what your life is like using ventilation, and your thoughts on wider issues that affect respiratory health, and exploring how we can share your experiences with a wider audience.

If you are interested in taking part, you will first speak to a researcher from the project to confirm that you want to take part, discuss any access needs and to provide some background information. You will then join a small group (4 - 5 people) in a similar situation who use, or have used, ventilatory support. We will invite you to a series of workshops with the rest of the group and researchers from the project. These workshops will take place fortnightly between September and November 2026.

In the first workshop, we will discuss photographic storytelling, and the planned exhibition. Throughout, we will consider as a group what we want the exhibition to be, and what are the issues we want to highlight to a wider audience.

Before each workshop, you will be asked to take photos in response to a question, and share these with the researchers. The intention is that these photos will represent your experiences as someone who uses a ventilator. You can take photos yourself, or direct someone else to take particular photos. You will need to use your own camera or smartphone as these cannot be provided.

You will then discuss the photos in online workshops with the rest of your group, and members of the research team. You will be asked to talk about the photos you took, and discuss your experiences more generally. These will be six online workshops, using Google Meet software, and in order to make this more accessible, each focus group will be around 90 minutes (with a break), so we are asking for around 9 hours of your time, plus the time taking and uploading the photos. We will let you know the planned days and times of the workshops before you agree to take part.

At the end of the series of workshops, you will meet with the researcher to complete a licensing form, and agree which photos you would like exhibited. We’ll send you a voucher to thank you for your time, and keep you informed about the project.

If you are interested in taking part, please request an information sheet or if you have any questions about the project, please contact Jennifer Kettle (j.e.kettle@sheffield.ac.uk).