Living with idiopathic pulmonary fibrosis (IPF)
Sensitive Content Warning
There is also a subtitled version, and shorter versions of the film are also available in the section below entitled: "About the film(s)"
Before accessing the links to the films, we want to provide a gentle warning. The films referred to may be distressing for some, as they discuss the impact of IPF on individuals and their loved ones.
This page celebrates the co-creation by patients, carers, artists and researchers of a film anthology about the experiences of living with IPF.
The film(s) are based on monologues which have been developed by HeARTh Centre writers, created from research conducted by the University of Birmingham with people who have had direct experience of IPF. The film(s), directed by and produced in association with Horizon Collective, protects the anonymity of the research respondents by using actors to perform the stories in voice over, while the film focuses visually on the details of their environments and the elements which contribute to their wellbeing.
We hope that the film(s) will act as a useful resource for others:
- Health care professionals (HCPs) – we would like this film to be shared in teaching about rare/respiratory diseases with HCPs and students.
- Members of the public, IPF patients and their carers – we would like those with an interest in IPF to be able to share it with others.
- Performers, writers, film makers and journalists – anyone interested in collaborating with researchers to explore real life issues, or to use techniques of body acting and voiceover, may be interested in this anthology series.
Idiopathic pulmonary fibrosis (IPF) results in scarring of the lung for no known reason, and is a rare, life-limiting disease. Further information on IPF and support for patients and their families is available from Action for Pulmonary Fibrosis.
The film(s)contain the stories of Len, Jaswinder, Steve and Beverley. The four stories are:
- The garden - Len tells about his experience of living with IPF and anti-fibrotics (IPF medication).
- The joy of music - Jaswinder tells about life with IPF and ambulatory oxygen.
- Marcus the dog - Steve uses oxygen whilst out walking. He talks to his dog Marcus Aurelius (named after the Roman Stoic philosopher) about controlling his feelings.
- A proper goodbye - Beverley shares her story of having lost her mother.
Subtitled versions
Sensitive Content Warning:
Our intention is to provide education and support, however, we understand that witnessing the effects of this condition can be emotional and challenging. When reviewing the film(s) some viewers felt that the content around the progression of the disease was too raw and alarming, particularly the third case (end stages) and fourth (story of carer who lost her mother to IPF).
While the information may be distressing, knowledge is a powerful tool in navigating life's challenges and some viewers with the disease found comfort in seeing that they were not alone.
This collaboration was facilitated by the University of Birmingham, and involved patient groups, the HeARTh Centre and Horizon Collective. We invited people with IPF from around the country to share their stories about living with this disease. The participants went on to help us co-produce a short film anthology about ‘living with IPF’. HeARTh centre writers facilitated workshops to co-create characters and stories that captured people’s experience of IPF, then they weaved the stories together to produce four fictional narratives which are spoken by actors. The four pieces can be viewed as a whole (43 minutes) or individually (approximately 11 minutes each).
The HeARTh Centre specialises in Applied Drama Research Collaboration, undertaking research about health and social issues and developing them into narratives which are used as a means of dissemination of research findings and in training future professionals. Their research methods involve collaboration with research organisations, but also collaboration with those people with direct experience of the condition in question. The HeARTh Centre works closely with the commissioning organisation towards changing policy in line with the research findings, wherever possible.
The research project team is made up of colleagues from the University of Birmingham, the HeARTh Centre and the Horizon Collective.
This project was a part of a wider study named OXYPuF: OXYgen for idiopathic PUlmonary Fibrosis, led by Prof Alice Turner. The OXYPuF trial aimed to assess the clinical and cost-effectiveness of ambulatory oxygen therapy in patients with idiopathic pulmonary fibrosis.
The study was funded by the NIHR HTA programme (NIHR131149). The views expressed are those of the researchers and not necessarily those of the NIHR or the Department of Health and Social Care.