Narrative Explorations
Cripping Breath's narrative-informed research stream is co-led by a small team of community researchers, and supported by our narrative partner organisation, Pathfinders Neuromuscular Alliance.
Capturing stories of ventilation
Our narrative explorations are co-led by our Community Researcher Co-operative, a group of experts-by-experience employing virtual narrative methods to capture participants' stories of ventilation. Our Community Researcher Co-operative is supported by our Community Researcher Lead Suzanne Glover, our Research Associate Jennifer Kettle and our community partner Pathfinders Neuromuscular Alliance.
Often non-academic co-researchers are included in inquiry only in tokenistic ways; for example, they may be routinely excluded from the parts of the research that are deemed the preserve of academics, such as analysis and publication (Liddiard et al. 2019). To counter this, our narrative data collection and analyses throughout the project will be accessible, collaborative and co-led by the Community Researcher Co-operative, who will work as researchers across the project (see Liddiard et al. 2022).
Our researchers and partners
Dr Suzanne Glover - Lead Community Researcher
I am an academic researcher with a lived experience of disability. I currently work for the University of Sheffield and Pathfinders Neuromuscular Alliance, a user led organisation, run by and for, people with muscle weakening conditions. My work is grounded in co-production methodologies in the context of life-limiting impairments. As the Research Officer for Pathfinders Neuromuscular Alliance, I have managed an international co-production study - learn more here. I have recently taken the post of Lead Community-based Researcher in Cripping Breath, where I'll be working with a small group of community-based researchers to collaboratively develop new understandings of respiration and respiratory health, in particular recognising the experiences of those who have had their life saved or sustained by mechanical ventilation.
Dr Jennifer Kettle - Research Associate
I am a sociologist with an interest in everyday experiences of health and illness, focusing on how these are narrated, particularly in the context of families and personal relationships. Following my PhD in 2016, exploring the interconnections between two generations of mothers’ experiences of household work, I have worked at the University of Sheffield in the School of Clinical Dentistry. I have explored the significance of the mouth over the life course, generating fascinating 'mouth stories' through interviews with older people, and analysed the narratives of adults who have undergone jaw surgery. I have also been involved in a number of other projects, primarily interviewing patients, parents and health professionals as part of various clinical trials. Going forward, I am interested in exploring different ways of generating narratives and working closely with co-researchers, and I am very excited to be working on the narrative stream of Cripping Breath.
Pathfinders Neuromuscular Alliance
Pathfinders Neuromuscular Alliance is a user led charity, run entirely for and by people with muscle-weakening conditions.
Pathfinders Neuromuscular Alliance provides social and support services, a range of information guides, events and outreach, and campaign on issues that matter to adults living with muscle-weakening conditions.
Recruiting our Community Researchers
In Autumn 2024 we recruited our Community Researchers - people with lived experience of respiratory illness who live on or with ventilation (technologies that support breathing). These paid roles involve joining the wider Cripping Breath research team, undertaking data collection and analyses, as well as supporting other project activities. We used this animation, made by Inertia Creative, as a key recruitment tool.