Exploring Patient and Family Experience of Hospitals and Medical Treatment – 18^th May, JOMEC, Cardiff Univesity

Jenny Kidd (JOMEC)
Lisa Heledd (Storyworks)
Jenny Kitzinger (JOMEC)

Last week, the School of Journalism, Media and Cultural Studies (JOMEC) held a series of public events exploring digital storytelling and the significant impact this mode of expression can have on wider culture and the general public. ‘Exploring Patient and Family Experience of Hospitals and Medical Treatment’, was the most powerful and moving of these sessions and it was also the one that most explicitly demonstrated how digital storytelling can promote and actively encourage change within institutions through suggesting ways that allow professionals working in these institutions to listen to the voices of patients and their families.

Digital Storytelling, as Jenny Kidd explained in her opening talk, refers to a very particular type of ‘practice and product’. As a form, it is one that JOMEC has a particular affection for because of its rich history within that department. Daniel Meadows, who was the Creative Director on the BBC Capture Wales project, and Sharon Magill, for example, have had a significant influence within the department on the way Digital Storytelling is taught, theorised and understood. Kidd, who worked with Meadows for her PhD as part of Capture Wales, explained that Digital Storytelling, as understood and practiced by practitioners inside and outside of JOMEC, consists of bringing together fragments of media such as videos, music, photos, voice overs and text to create a narrative that is personal and autobiographical in tone. They feature a scripted voiceover of around 250 words and, as such, according to Daniel Meadows, Digital Storytelling videos have a ‘scrapbook aesthetic’.

The form emerged, as Kidd observed, around the turn of the century as part of a broader exploration of non-linear narratives and of marginalised voices. It is also related to the increased interest that people began to have around their own family histories and personal stories around this time. What marks out Digital Storytelling from other forms of media and expression is the level of intimacy and richness of personal material that is used in these videos which is, as Kidd comments, still very rare in more ‘traditional’ media. The form is also far more intimate and ‘less fleeting’ than that of a Facebook update, Vine or a selfie. Fundamentally, digital storytelling is about ‘everyday people telling stories about their own lives using digital media’. Given this, then, it is perhaps not surprising that it was a form that BBC Wales began to use in the early 2000s (Capture Wales) as a response to accusations that on screen representations of people by the broadcaster were too narrow, and often taken from too small a talent pool.

What is remarkable about Lisa Heledd’s work is that she takes the fundamentals of this form and combines it with theatre to produce unique site specific performances that enable people to tell their own stories within an environment that is emotionally resonant to them. As Lisa commented, she wants to create a space which is at the precise intersection between the imagined past and the imagined future so that we can unsettle narrative foundations and destabalise ideas that stop us changing the future. Her work acts as an intervention within the landscape so that change can be enacted. Lisa thus creates story walks.

At the same time as Lisa was speaking, one of her story walks was being enacted. Ten nurses were walking around the Royal Glamorgan Hospital wearing headphones, listening to Karen’s story. Karen was someone whom Lisa had recently worked intimately with to create the story walk which powerful documents Karen’s diagnosis, treatment and recovery from cancer. Initially Karen felt she would not have anything valuable or of interest to impart to Lisa, but as their journey began around the hospital, Karen related over two hours’ worth of material which Lisa then edited down to nine stories that was designed to take you through the hospital. At various points around the building, then, Karen, through audio logs would tell her story: from the car park, over the bridge, into the reception, down the corridor, into a waiting room, outside a Ward and back out of the main door. An audio log outside of Ward 2, for example, documents the time one of the machines that was managing Karen’s pain, would not stop bleeping. As Karen recounts in the audio log: the bleeping cut into your senses, it made you feel guilty because it was ‘your machine’ that was bleeping and was keeping everyone awake. The noise was driving Karen mad and this anxiety was further heightened when Karen began to think that in the morning she would be in a huge amount of pain, also, because the machine was faulty.

Lisa, by juxtaposing Karen’s story with the powerful sound of the machine bleeping in the very environment this incident took place, creates a very potent and affecting experience that allows the nurses and other hospital workers to better understand a patient’s journey through the hospital environment. Ultimately, Lisa wants people to feel like they are an active agent within the story so that they can then change what happens next. As Andrea Olson remarks (whom Lisa quotes): ‘your place is not a backdrop for creative work; it is a participant, a partner, a collaborator.’ By envisioning the actual environment itself as a collaborator, as something that can generate meaning, Lisa transforms Digital Storytelling into not just a mode for self-expression, but also into a medium that can provide hugely significant and beneficial changes to society at large.

An example of how important sound is to our memories and the way we construct events was related by Jenny Kitzinger, the final speaker of the day, when she told her story of visiting her sister, Polly, in the Heath hospital, who was first in intensive care and then in a high dependency unit, in a coma, after she was involved in a car accident. Every time Jenny would visit, the car parking machine would say, in an electronic voice, ‘this machine gives change’. This experience of this sound, this voice, has become embedded within, as Jenny acknowledged, ‘the very raw experience of what happened to my sister’. It seems that these seemingly minor details become entwined with the more serious events surrounding them, yet at the same time it also becomes impossible to separate them. Both Jenny and Lisa’s work explores these experiences and how we can make meaning from them.

Jenny’s work goes beyond ‘traditional research’ and explores how we can create and recreate culture through literature, film, visual art, music and digital stories. What Jenny finds pertinent about digital stories is that they connect with wider debates about democracy, media, citizenship and our relationship to institutions such as the BBC and, indeed, the NHS. Whilst, as Jenny comments, the traditional research article can bring certain things into focus, it also makes other things invisible. When Jenny’s sister, Polly, fell into a coma, after her car accident, Jenny became part of her own research and created her own Digital Story, detailing her relationship with her sister since the accident. Powerfully, the video ends with Jenny asking, ‘we were told that we were lucky that her life was saved, but…what would Polly have wanted?’

Jenny includes this story as part of an exhibition, as an installation. There are three or four of these stories which are attached to headphones which are, in turn, attached to Polly’s bedroom door that Jenny has removed from her father’s house. The reason for this is because Polly kicked in the door when she was about twelve and decorated it with a collage, a collage of all the things she cared about: marches she had been on and statements such as ‘Life is not measured by how many breaths you take but by the moments that take your breath away’. It has become both something that represents Polly’s beliefs and ideals but it is also an historical document in its own right. For example, Jenny has been asked by young people ‘what was the miner’s strike?’ because of it. Jenny’s work, then, is Digital Storytelling as exhibition. It provides a space where people can reflect and think through the implications of such work and it is having a very profound effect on audiences.

Technology today is providing us with easier ways to express ourselves. The real challenge, however, is to ask how can we express ourselves in a meaningful way that can produce cultural change. Jenny Kidd, Lisa Heledd and Jenny Kitzinger’s work provides us with important and applicable examples of such practice, whilst also reminding us that academic work is at its most engaging, stimulating and exciting when it is public facing.

– Michael John Goodman
goodmanmj@cardiff.ac.uk
@mikeygoodman1