Everyday Stories of Breathing and Ventilation

●  Do you, or have you at some point, needed ventilation to support your breathing? (e.g. non-invasive ventilation (NIV), home mechanical ventilation (HMV)). You may use/have used BIPAP, CPAP, VIPAP etc. via a mask, mouthpiece or have a tracheostomy.

●  Do you want to share your experiences as someone who uses, or has used, a ventilator or breathing support device?

We are looking for disabled and chronically ill adults in the UK to take part in two in-depth research interviews. 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 or mouthpiece, and to people who have a tracheostomy. We are also interested in speaking to people with long-term respiratory conditions who have previously spent time on a ventilator in a crisis situation.

We are interested in hearing your story of coming to ventilation or breathing support, what your life is, or was, like using ventilation, and your thoughts on wider issues that affect respiratory health. In the first interview, we’ll ask you to tell us your story of coming to use ventilation, and what that means to you. In the second interview, we’ll ask you more about your experiences, such as your day-to-day life, interactions with the NHS and views on issues such as the COVID-19 pandemic, air pollution and housing. Our interviewers are community researchers with lived experience of ventilation.

If you are interested in taking part, you will first speak to a researcher from the project to officially agree to take part, discuss any access needs and to provide some background information.

You will take part in two online research interviews, using Google Meet software. In order to make this more accessible, each interview will be around 30-60 minutes, so we are asking for around 1 to 2 hours of your time). We will arrange the two interviews at a time to suit you. After both interviews, we’ll send you a voucher to thank you for your time, and keep you informed about the project.

Interested in taking part?

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

Our aim in this research is to collect stories from a diverse group of people with experience of using ventilation to support their breathing. This is part of the wider Cripping Breath project which is about centring people who’ve had their lives saved and sustained by using ventilation, and listening to voices that are often absent in political discussions about breath and respiration. Therefore, our focus in this project is on developing knowledge from the perspective of disabled and chronically ill people with lived experience of ventilation, and those who are or have been ventilated due to respiratory illness or impairment.

If I’m interested in taking part, will you definitely interview me?

No, we can’t guarantee that.

In this research we want to hear from a range of people with different experiences of ventilation, for example including people with different impairments and health conditions. This includes Motor Neurone Disease, progressive muscle-weakening conditions such as Duchenne Muscular Dystrophy, respiratory conditions such as Chronic Obstructive Pulmonary Disease (COPD), and using ventilation following a spinal cord injury. This is not a complete list and we are not excluding any particular conditions; if you use/have used ventilation and you want to take part, please do get in touch.

We also want to speak to people who have been using ventilation for different amounts of time (such as from childhood, for several years as an adult, and having started relatively recently), and who have different patterns of ventilation use (such as 24 hour, night-time and some day-time use, and night-time only). We are also interested in hearing from people with respiratory conditions who have been ventilated in an emergency situation.

Finally, we want to speak to a diverse group of people in terms of gender, ethnicity, age, sexuality etc.

We intended to interview around 30 - 40 people, and need to ensure that this group reflects the diverse population of people who use ventilation, including groups who are often underrepresented. While we are interested in everyone’s unique story, unfortunately, we might not be able to offer you the opportunity to take part in research interviews for this project. The researcher may ask you some questions by email or during an online chat, and will let you know if this is the case.

Even if we can’t offer the opportunity to take part in research interviews, there may be opportunities to be involved in other parts of the research at a later date. If you would like to be informed about these, please let our researcher know and we will keep your email address until the end of the project. Please email j.e.kettle@sheffield.ac.uk to request this.

If you would like us to send you updates on this research, and the work of the wider project, and let you know about any future project events, please let our researcher know (j.e.kettle@sheffield.ac.uk) and we can add you to the project mailing list.

I use CPAP for sleep apnoea, can I take part in this research?

We recognise using CPAP as a treatment for sleep apnoea can be a significant and potentially life-changing experience. Since we started looking for participants for this project, we have had an amazing response from the sleep apnoea community. As our aim is to interview a range of people with different experiences of ventilation, including people with different illnesses, impairments and health conditions, we are no longer looking to recruit people who use CPAP exclusively for sleep apnoea.

We understand that you may use CPAP as a form of ventilation/NIV for sleep apnoea and one or more additional respiratory conditions, illnesses or impairments. If this is your situation then we would like to hear from you.

I use ventilation (NIV, BIPAP, CPAP) due to a respiratory illness or impairment but don’t identify as disabled or chronically ill, can I take part in this research?

Yes. If you use ventilation due to a respiratory illness or impairment, we are happy to hear from you. We are happy to include anyone who fits the criteria of having lived experience of chronic respiratory conditions and ventilatory support, regardless of how they identify. 

I do not use ventilation, but I use/have used an oxygen tank, can I take part in this research?

Unfortunately not. For the purposes of this research, we are not including using an oxygen tank as a form of ventilation.

I have previously used some form of ventilation but have decided not to continue using it, or use it only rarely. Can I take part in this research?

Yes. If you have previously used some form of ventilation, and no longer use it, we are interested in hearing your story. Similarly, if you have been recommended ventilation, but are not using it as often as recommended (for example, if you only use it when you feel particularly unwell), we are interested in hearing your story.

My clinical team has discussed ventilation with me, but I have decided not to use a ventilator at present. Can I take part in this research?

If you have made a decision not to use ventilation, and have no lived experience of using a ventilator, then unfortunately, we are not able to include you in this research.

However, we are interested in the reasons people choose not to use ventilation, and the stories of people who make this decision. If you are interested in being involved in future research on this topic, please let our researcher know and we will keep your email address until the end of the project. Please email j.e.kettle@sheffield.ac.uk to request this.