Digital Technology and Human Vulnerability: Towards an Ethical Film Praxis
Life:Moving is a filmmaking project, exhibition and unique collaboration between researchers from University of Birmingham, filmmaker and photographer Briony Campbell, and hospice patients at John Taylor Hospice (Erdington, Birmingham). Between October 2016 and March 2017 six participants worked on producing six digital films. The intention was to communicate meaningful and honest experiences of people affected by terminal illness. The films were shown as part of an exhibition at St Barnabas Church (Erdington, Birmingham).
This filmmaking project is part of the research project – Digital Technology and Human Vulnerability: Towards an Ethical Film Praxis (DTHV) – which explores the way that digital film technology has transformed the encounter between viewer and vulnerable other, here the individual affected by terminal illness, and reflects upon how digital technologies might transform our understanding and response to human vulnerability. The project was linked to and informed by art therapy and the wellbeing team at the hospice, and ethical considerations remained at the centre of research taking place, with regular review meetings held.
This report analyses the impact of the project Life:Moving, focussing primarily on societal impact, the impact on the participants, families and friends, communities and hospice workers, while also touching on the academic impact of the project and the impact on researchers and arts practitioners working with vulnerable individuals. A full discussion of the impact of the research findings, of DTHV, will take place elsewhere.
The predominant analytical approach used in this report is empirical impact evaluation, based on interviews conducted with the participants of the project, feedback collected during exhibition of the films (both written and recorded) and feedback given by Michele Aaron (University of Birmingham) and Jed Jerwood (John Taylor Hospice).
The report evaluates the existing and potential reach of the project, looking specifically at the project website and blog, as well as additional events, festivals and exhibitions where the films are being shared or the research presented.
The report sets out the key findings and analyses the information gathered, presenting conclusions designed to aid the long term development and impact of the project.
Participant (patient) feedback
Six patients at John Taylor Hospice took part in Life:Moving and were given the skills and support to produce their own audio-visual stories. Each participant set out with different aims and objectives. “Some participants stated their desire for their film to be a form of outreach about what it is like to live with a life-limiting condition or illness. Other participants are interested in their film exploring philosophical questions about the nature of life and death.”
Below are selected quotes and examples from interviews conducted with participants of the project. Questions included asking what message participants wished the film to convey and what they wanted and felt they got out of the experience. Every participant stated that they would recommend the project to others.
“The message from the film in itself is to do with the public and knowing terminal illness doesn’t always put you down. Lots of people become terminally ill and then their depression takes them away and then they give up so quick, and my husband was completely utterly the opposite of it and he fought right till the last minute of breath. And I think it’s important to give that message to other people going through the same thing.”
Haifa also commented on the importance of the film for Reem, their daughter, who starred in it. Haifa explained that the finished product means Reem will be able to see what her dad was like in twenty years time which is wonderful.
“[The project] opened doors I wasn’t expecting. From the beginning there was a very therapeutic element to it and that process did get to me. I’m not used to opening up. […] It was the thought that everyone was going to see it. It was that process of having to work through my feelings about how I felt.”
“It was helpful for me on a personal, psychological level. It’s helped me to acknowledge my feelings about terminal illness or about how I’ve been feeling, and that’s not something I’ve ever wanted to look at before.”
“The main thing I wanted was to obviously portray a message but also to feel like I was fulfilling a useful purpose. […] People can give up because they feel useless, nothing to do, they’ll give up and won’t fight it. But if you give people like me a reason to get up in the morning and really fight the disease we’ll get far more chance.”
“[The message of the film] is about the mental aspect of the disease – because while the physical symptoms are monitored and treated, if you’re having a really bad day nothing’s done about it. Basically they’ll talk to you but they’re not trained in combating depression and once again if you get too depressed you’re just going to pack in.”
(Talking about the impact of his film on hospice workers) “They thought it was different to see somebody that would actually just sit there and tell things as it is, instead of bells and whistles, fluffy white clouds and all that. They found it opened their eyes as well.”
“I wanted to express hope. That even if you are faced with the unexplainable and unexpected you can keep hold of hope. And your diagnosis doesn’t have to define who you are.”
“I loved making it with Louis and hearing his views and ideas on how the film should look. It’s another precious memory for us.”
The exhibition at St Barnabas Church included a launch which participants, hospice workers, family members and local community members were invited to. Feedback was collected both via voice recording and written feedback provided on a tablecloth at the exhibition.
Recorded testimony by Patrick Breen, Heart of the Hospice Manager:
“The thing that strikes me most about the exhibition is that every patient is an individual. When you’re at day hospice you see patients as a group of patients […] which is probably the wrong thing to say. Because they’re all there together, and you don’t have the time to spend as much time as you could do with them, it’s a couple of minutes here and couple of minutes there, you never really get to know the full story I suppose. But watching this, these people become very much individuals, they’re not part of a group they’re very much their own individuals now.”
“A beautiful and moving exhibition. It’s refreshing to hear about death and terminal illness in such a fresh and honest way – this is what society needs. The films are amazing and help us to remember to value and appreciate every day of our (often unpredictable and unfair) lives. A special well done to Fran and Louis, my family, for such an inspiring and well-made film.”
“Amazing. This evening and the faces and voices of the participants will stay with me for a long time I think. Moving in every sense of the word.”
“Another example to show that hospices, whilst places where there is sadness, are also places of great joy, kindness, warmth, and most importantly – love.”
“Thank you for your candour and courage. I’ve been moved and made to think and laugh and cry and you have helped me. Thank you.”
“So emotive but full of spiritual strength and joy… uplifting and happy.”
“I don’t want to talk about death.”
Feedback from University of Birmingham researchers and related staff:
The progress of the project was recorded on a dedicated blog on the website. Below are selected extracts from blog entries by Michele Aaron and Adrian Banting.
“A development that has emerged this month is the tension and even conflict between Universities’ ethical review structures and Arts-based research projects such as ours. Gaining ethical approval for Life: Moving (or, rather, the Digital Technologies and Human Vulnerabilities project) was a long and rigorous process which Michele undertook in 2015 and 2016. NHS approval could not be given owing to the disciplinary and methodological particularities of this project, that is, that it is s based on neither clinical nor Social Care activities. It took a year to find that out. Therefore, the University’s Ethical Review committee had to provide the approval instead. The approval that was granted did not originally include participants’ filming “post-capacity” in accordance with the 2005 Mental Capacity Act. Having sought additional advice, Michele now knows that there is provision within the act for this filming to take place in accordance with participants’ advanced wishes and consent.” – Adrian Banting, December 2016
“We showed short films made by professional film-makers […] around themes of death and dying in order to give a sense of what is possible. At the same time we struggled to find films that were not geared towards leaving a legacy for family members. We felt this might be important to show, so as not to limit the role film might play for the participants.” – Adrian Banting, November 2016
“This month has seen some of the project participants drifting away from the weekly workshop session format we’ve employed up to this point. We have had to adjust our approach to focus more on one-to-one meetings with participants, either at the hospice or visiting participants at home.” – Adrian Banting, January 2017
Michele also commented: The blog and the website need substantial input. The project needed additional resource and time. The urgency of sharing the films (given the subject area and, more immediately, the ‘lack of time’ surrounding the participant-authors) means that I have had to prioritise many other things over the blog and website.
Testimony from Sheena Robertson, Research Support Partner, College of Arts and Law, University of Birmingham:
“The Life Moving project was supported by the research support team at the College of Arts and Law from inception through to completion. We were delighted that the project received funding from the Arts and Humanities research council, and it is fair to say that the challenges of delivering the project were largely unforeseen at the outset, and the insights gained from supporting the project through these challenges have sharpened and intensified our focus on the support that we provide for impactful and innovative research.
The challenges included:
- Identifying the correct route to obtain ethical approval for research involving NHS patients
- Addressing the concerns raised during the ethical review process
- Liaising with the funder to agree changes to the project schedule arising from the extended time for ethical approval to be given
- Interpreting the ethical guidance e.g. what does ‘lack of capacity’ mean when this may be transitory and not permanent
Lessons were learned that have already influenced our practice in the research support office e.g. the need to start the process of gaining ethical approval as early as possible and be proactive when presenting the project to ethics reviewers. This project was one of two that prompted a project led by a graduate trainee on responsible engagement in the humanities and social sciences. The remit of this project included exploring:
- The effectiveness of ethical review for impactful research, are the right questions asked at the right time, are panel members adequately prepared and briefed to make appropriate judgements and do applicants receive appropriate and relevant training and support to prepare their ethics applications and attend review panels.
- The health and safety support for researchers, from physical safety through to support for secondary trauma
This project has concluded and there is strong support from senior management to take the recommendations forward. It is fair to say that the Life Moving project was one of two prompts for this initiative, and that transformative improvements to the support for researchers undertaking impactful research are likely to be implemented over the next year or two as a result of the insights gained from our involvement with Life Moving.”
Testimony from Jed Jerwood, Art Psychotherapist and part of the John Taylor Hospice Well-Being Team
“Yes, some of the conversations about grief and loss have been very interesting. One participant particularly has become much more present, participating and leading activities and prompting conversations amongst the day hospice group about things such as emotional responses of men and women, perceptions of death and dying and different responses to dying. The project has opened up the possibilities of conversations that didn’t take place before.
It has opened up people’s minds to participating creatively. This is something we have worked on for five years now, but this project has captured the imaginations of patients and some staff in a different way because the power of the films is hard to ignore once you watch them. It has also enhanced the profile of the art therapist who convenes groups in day hospice and the role of creativity in engaging in difficult conversations. As a result, the art therapist has been asked to work an extra day in day hospice in the newly remodelled service.
The project has also forged and strengthened partnerships between John Taylor Hospice and the Birmingham Repertory Theatre, St Barnabus Church, Birmingham and Warwick Universities, and Hospice UK who have invited us to speak about the project at their national conference in November.
I will be using the films in some training externally for undergraduate nursing students and hopefully internally in the future.
We have begun a process of using co-design to develop our patient engagement and volunteering strategy. This is partly in recognition of the fact that we don’t hear what patients have to say in a formal or structured setting – some of the comments in the films came as a surprise to the organisation.”
The exhibition at St Barnabas along with the launch meant that the films could be viewed by a wider audience which included community members and the general public. A dedicated website was created along with a project blog in order to extend this reach even further. In addition to this, the films have appeared or will appear in other festivals or exhibitions and the research has been or will be presented at a number of conferences and events. This extended reach demonstrates the projects existing and potential impact on a wider community dealing with terminal illness (other hospices and hospice users as well as family members), as well as researchers and arts practitioners exploring the subject of death or working with vulnerable adults.
The website contains information and context, a research blog, links and resources, as well as exhibition images and extracts from the films themselves. It documents the project clearly, using accessible language, and can be used by anyone as a resource. Not only does it provide access to the project films and the research, but it also provides a platform for other resources to do with death and dying. Examples of how the website can be used in its current state are:
- any individual dealing with issues surrounding death and terminal illness can watch the project films as well as other films that are available on the site
- Researchers, filmmakers and digital media and arts practitioners can look at the filmmaking or ethical guidelines that are included in the ‘links’, as well as explore the project blog for information on how the project worked as a whole.
The website has had over a thousand views in 2017.
Once the Ethical Praxis Prototype is complete this will also appear on the website, and will be an invaluable resource for researchers and arts practitioners, as well as meeting the need for such guidelines within video advocacy and rights organisations as well as for journalists, editors and media activists.
There is room to develop the website further, and this is explored below in section 6: Further Impact.
Partnerships and events
A list is included below of additional festivals, exhibitions, conferences etc. during which the films have appeared or the research has been presented.
January 2017 Michele Aaron presented an initial research paper on Life:Moving at the Media, Communication and Cultural Studies Association conference in Leeds
May 2017 Life:Moving Exhibition and Talk at mac birmingham as part of A Matter Of Life and Death Festival
June 2017 Briony Campbell and Michele Aaron delivered a research paper on Life:Moving at the European Network of Cinema and Media Studies conference in Paris
23 September – 21 October Life:Moving Exhibition installed at the Birmingham Repertory Theatre
29 September Life:Moving presented at Brumyodo’s ‘A Matter of Life and Death festival celebration
October 2017 Michele Aaron to talk about project at Midlands End of Life Community Development Conference – ‘Creating Space to Connect and Care’ at St Giles Hospice, Birmingham
November 2017 Michele Aaron and Jed Jerwood to discuss the Life:Moving project on a panel at the Hospice UK National Conference. Life:Moving exhibition will be installed for the duration of the conference
December 2017 Life:Moving exhibition to be installed at community arts festival Respublika! In Limassol, Cyprus.
Spring 2018 Life:Moving to be installed at the DeStress Arts festival in Leicester
The films will be shown as part of an exhibition at Ort Gallery, Birmingham
Marketing & PR
The exhibition appeared on the John Taylor Hospice website:
And was also featured in the following:
What’s On Birmingham – https://www.whatsonlive.co.uk/news/john-taylor-hospice-patients-and-families-behind-the-camera/37786
BSSEC – http://bssec.org.uk/patients-and-families-supported-by-john-taylor-hospice-tell-their-stories-in-film/
The Brummie – http://www.thebrummie.net/behind-the-camera-with-john-taylor-hospice-patients-and-families/
Sutton Coldfield Local – http://suttoncoldfieldlocal.co.uk/john-taylor-hospice-patients-families-behind-camera-235862/
Chamberlink Daily – https://www.greaterbirminghamchambers.com/latest-news/news/2017/4/24/university-family-filming-helps-understanding-of-death/
Charity Today – https://www.charitytoday.co.uk/films-by-hospice-patients-and-families-will-tell-their-stories/
The Voice – http://www.voice-online.co.uk/article/weekend-watch-pioneering-documentaries-bham
Weekend Notes – https://www.weekendnotes.co.uk/life-moving-exhibition-st-barnabas-church/
Participant (patient) testimony:
The participants gave varying answers to questions asked of them in interview, and no two experiences of the project were the same. Answers provided by participants in interview demonstrate the varying levels of personal impact the project had.
The project created an opportunity to spend meaningful time with family members, as demonstrated by the testimonies of Haifa and Fran. Haifa, the wife of Yussef, who passed away midway through filming, highlights the importance of having the film for their daughter Reem, as a record of her father.
As predicted, the project had therapeutic benefits for participants. However, as demonstrated by Keisha’s testimony, the fact that the project was not presented directly as therapy encouraged hospice-users to contribute who might not have considered therapy previously. The project produced an opportunity for an alternative form of therapy, with a positive impact on participant health and wellbeing.
More evidence of improved participant health and wellbeing can be found in Rob’s testimony; who explains that having something useful and creative to do is integral to a person’s mental health. Rob also touches on the impact that the films had on hospice workers; the project provided a platform for patients to discuss their thoughts and feelings in a way that they had not felt previously able to, giving hospice workers a better insight into their patients.
Some patients got what they wanted out of the project and some didn’t, but all stated that they would recommend the project to others, demonstrating the success of the project in terms of participant health and wellbeing.
The exhibition at the community centre brought the subject of death and dying into the public sphere, raising awareness about the subject and about hospices in general. The exhibition feedback was almost entirely positive, demonstrating the perceived need for discussions about death and dying to occur more widely and more frequently.
The recorded testimony from Patrick Breen demonstrates the way in which the project and the films changed the way he viewed the patients.
Feedback from University of Birmingham researchers:
The steps that were undertaken in order to gain ethical approval for the project is now documented and can inform any similar attempts in future. An unpredicted outcome of the project might be that the ethics committee at the University of Birmingham are less held back by litigation. A possible outcome could be for University of Birmingham ethics committee staff to receive better training around the mental capacity act.
The way in which this project has been managed and documented will provide information for those wishing to work with film and vulnerable adults in the future. The project shines a light on issues where there is a lack of arts research, as touched upon in the project blog and the challenges that were met and discussed. The blog and website were not as developed as initially intended; the priority had to remain with producing and exhibiting the films, and this process required more time and resource than was originally predicted. This in itself is useful information for future researchers working with vulnerable individuals and specifically patients in end of life care.
Sheena Robertson’s testimony provides evidence of how Life:Moving had a direct impact on the College of Arts and Law research support team at the University of Birmingham. Sheena elaborates on the ways in which the project has led to knowledge gain surrounding the process of gaining ethical approval for research projects. As a result of Life:Moving, further research has been undertaken into ethical review, as well as health and safety support for researchers. As stated in Sheena’s testimony, ‘transformative improvements to the support for researchers undertaking impactful research are likely to be implemented over the next year or two as a result of the insights gained from our involvement with Life Moving.’
Testimony from Jed Jerwood, Art Psychotherapist and part of the John Taylor Hospice Well-Being Team
The testimony from Jed Jerwood demonstrates the lasting impact that Life:Moving has had on hospice staff and patients. He comments on the positive change in participant behaviour as a direct result of the project and the conversations it facilitated. Jed also highlights the medium of film as crucial to the change in staff and participant thinking, specifically an increased awareness of the potential of creative activity for encouraging and initiating conversation around difficult topics – specifically death and dying.
Jed also discusses the impact on John Taylor hospice itself – the project has facilitated partnerships between the hospice and organisations within the community and the creative sector, as well as Universities. The co-design of the hospice patient engagement and volunteering strategy is evidence of the impact of the project on hospice policy and protocol.
Jed also highlights the lasting impact the project – and the films specifically – will have on patient care, with the films being used for training now and in the future.
The project has led to a range of benefits, largely benefiting the participants and families themselves, but also challenging ways of thinking in hospice staff and public and informing positive changes to research protocols for similar projects in the future. The project has the potential to reach a much larger number of people, through hospice staff training, repeat touring exhibition and the development of a marketing plan for the website and the blog. Some of these suggestions are explored below.
Digital & web
The website and blog contains a number of useful links and resources, but could still be developed further, with links, resources and films continually added. The website should continue to be a resource for those dealing with issues relating to terminal illness as well as for researchers and filmmakers and arts practitioners.
John Taylor Hospice could have a stronger presence on the website, perhaps with their own page, in order to demonstrate the creative projects that are implemented regularly at the hospice.
Other resource websites such as Dying Matters or BrumYODO should be contacted with a request to add https://lifemoving.org/ to links and resources pages. Reciprocal promotion should be encouraged.
Social media – Facebook would be the most appropriate platform to use for Life:Moving, as it provides a platform for discussion, ensuring a dialogue about death and dying is kept open.
See below examples of Facebook pages:
Training for hospice staff
As suggested, the project could be used for training for hospice staff. The films themselves could be made into a DVD/Blu-ray or DCP that could be sent to hospices upon request. Additional filming for this could include Michele and/or Briony introducing the project.
Partnerships should continue to be pursued with other organisations in order to tour the exhibition as widely as possible.
A note about this should be added to the website.
Feedback forms could be made for any future exhibitions in order to capture valuable data and feedback.
Producing a ‘How to’ guide that could feature on the website, listing what staff, equipment etc. would be required in order to recreate this project in another hospice or similar.
Any films that are made could be collected so that the website also became an archive for a large volume of stories in addition to the original projects.
 Research Assistant Adrian Banting, November 2016, https://lifemoving.org/research-blog/
 Haifa is the wife of Yusef Ahmed, a patient at John Taylor Hospice who passed away mid-way through the project.
 This touches on the academic impact of the project. The full extent of the academic impact of the project will be explored further when the ethical praxis is complete and in a different report, as the focus of this report is on the case study Life:Moving specifically.