Abstracts for Gathering 2021 Alphabetically by first name
Brin Hodgskiss Using patient stories to understand the impact of digital transformation and exclusion, with thanks to Traverse.Ltd There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard. Quote from a storytelling patient in palliative care There have been gradual changes to the ways in which primary care has been delivered in the last five years, with some online and video and phone consultations being introduced. During the 2020/21 Covid-19 Pandemic, the pace of these changes has significantly accelerated in order to minimise direct contact to protect staff and patients. There have been a number of reviews where the impact of changes have been examined. Few of these have focussed on the perspectives of patients and carers, so the Primary Care Transformation team in NHS England (East of England) commissioned work with Traverse to help fill this gap. We wanted to collect patient stories – both positive and negative – to feed organisational learning. This work sought to hear from about experiences of primary care in patients and carers’ own words. The focus was not only on the practical aspects of seeking and receiving care but to understand how these changes felt within the context of the pandemic. This work prioritised hearing from a diverse group of people, to understand how people’s background, context and specific needs or barriers might have impacted their experiences. This presentation will outline:
The approach taken to collect narratives and create ‘personas’.
The animated training films produced to support training of primary care staff and others.
Using these stories patient voices to drive and challenge transformation: developing new practices to use stories as a catalyst for change, and make them a sustainable part of transformation
Cathy Walsh I applaud NHSE/I for enabling some of the HOPE Network members to undertake the training with Prue Thimbleby (via University of South Wales, it’s one of the most inspirational game changing training events that I have completed in over 40 years in the NHS. Having completed the training, read and researched and reflected-on-action, about storytelling, in particular digital storytelling, it has led me off down a variety of rabbit holes, each one leading on an interesting path and subject. There is so much more information available than I had considered. My enthusiasm has led to using my skills as a facilitator, trainer and mental health nurse in developing my skills in training others in this medium. With responsibility for patient and care experience and equality, diversity and inclusion digital stories are a perfect way for people to share their lived experience. I used the 2 stories that I created as part of the training to get my organisations Board hooked. To be able to hear the voice of people (those accessing services and those working in services) to make a difference is a humbling gift. The challenge I have taken is to create and sustain this and train others to do this by following this path and creating their own journey. Our plans (post pandemic) to train volunteers to do this, hopefully by creating story circles (Lambert, 2018) along with colleagues to undertake digital storytelling. It is humbling and interesting to hear our staff stories as they learn to create other people’s stories. I can see the final destination and a beautiful horizon. There is emerging theory around storytelling being a means of reflection and learning (Robin, 2016), digital storytelling is defined by a collaboration between the teller and the facilitator and the voice, style, and form that the stories take. It has been a beautiful and rewarding learning experience that has truly impacted on my life both personally and professionally.
David Messer The free Our Story app is designed to improve healthy eating in young children, support storytelling and literacy in children with disabilities, and has been used with individuals who have dementia. Our Story is a free storytelling app that can be used on smartphones, android tablets and iPads. The app was designed by psychologists at the Open University to be used by young children and their carers to create digital picture books. Users can put their digital photographs into a picture book sequence and easily add sounds, speech and text to the photographs. Videos can also be included. The app can be sent by email and read by other people who have the app. The stories also can be sent as pdf files or printed out – obviously, without any sound. The app is available in English, Italian, French, Dutch, Polish and Finnish Children with a range of disabilities have enjoyed using the app to create stories and they have been very proud of their achievements, showing the stories to classmates and family. There is potential to use the app to assist communication and language development. The app has been used to encourage the healthy eating of vegetables in young children by making factual picture books about vegetables freely available to be used on the app, the pictures show vegetables that are growing, harvesting, in shops and in homes (farm to fork). This build on research that has shown familiarity with vegetables increases children’s willingness to taste and to eat the vegetables. The app also has been used with older people who have dementia. In one project the app was used to create a personal history about patient, a useful activity in itself and these stories were used by support staff to familiarise themselves with the patient. In another project the writing of these personal stories was found to help communication with families and reminiscing about past events.
Eifion Jones A film I made about trauma and how art helped my wife cope with our son’s leukaemia diagnosis. This is a deeply personal film about the trauma of our son Gene's leukaemia diagnosis and the brutal three year chemo treatment we've needed to help him through. The film explores how art and art therapy helped my wife Sarah reconnect with and begin to process the feelings she had buried deep inside herself to cope. The making of this film also became a form of therapy for me to make sense of what we've been through as a family. As a filmmaker, the painful but rewarding process of organising and communicating our journey into a short film helps me to own our experience and begin to move forward. We hope that this film can help others who may be struggling too.
Glenn Miles A dialogue on the positive outcomes and challenges of a story of End of Life Care in Morriston Hospital In 2016 my wife died unexpectedly in the A&E at Morriston Hospital. Although the staff were lovely to my daughter and I, after some consideration I felt that some things could have been done better. I heard about the program that Prue headed up as I did a poster presentation at a previous conference and she interviewed me. As a result I was able to use the audio to appeal to Policy Makers in Morriston, get some modifications to the family room and also send the story to the Sepsis Trust for them to use on their website. I also presented at a training for End of Life carers at Swansea University. I would like to share some of the challenges alongside Andrea who was the nurse in charge at the time of my wife's death.
Georgie Steele How do we reach through the screen to tell stories for health remotely? And how do we facilitate other people to tell their true-life stories online? Can working remotely be an opportunity to reach people who can’t leave the house? My experiences as a storyteller and a carer.
Using oral storytelling to tell biographical stories for health: does it work as well on video as it does in person? How can storytellers bridge the screen gap, and maintain emotional safety, taking into account:
strongly visual nature of film and video
loss of sensory/physical communication when tellers and audience are in a different place
This is especially true of biographical stories for health, which are likely to have emotive, challenging content: telling and hearing them needs trust.
enlarge their storytelling, using physical action, to reach through the screen
give space for interaction and reaction (even if telling is pre-recorded), making the
exchange feel more natural
treat the screen space like a theatrical space, moving towards and away from the
camera, entering and exiting, to restore some of the teller’s third dimension
All these could help build trust and familiarity.
Can online video workshops, in biographical storytelling for health, work just as well as in person workshops?
combine video workshops and the postal system to share stories, shoring up
connections between participants by helping them relate in more than one way
use various narrative forms (like drawing, oral storytelling...), to diversify and strengthen connections;
turn real-life stories into hero/fairy stories, loosening the boundaries that the small screen can impose, and expanding into magical thinking
use games and synchronised physical actions to help people relax
We need to make sure that:
participants are supported emotionally, even if at a remove
participants can access technical support, for example by phone
participants are offered support after the workshops
For some people, online may be in better than in person. If individuals are permanently isolated, then online storytelling workshops may be easier to access and offer a wider range of contacts.
Kate Hewett A powerful account of personal health experiences reveals the underlying narratives of healthcare and prompts us to think about the impact of the stories we tell. I have experienced multiple health issues over my lifetime and, while I remain grateful for the free NHS treatment I received, I found it difficult to make sense of it. Writing is a lifelong passion and one of the key ways that helps me process my experience, so when I began the MA in the Poetics of Imagination at Dartington Arts School in 2020 this was a focus of my creative practice. The MA looks at how stories shaped culture through time, and I began to see and understand the conflicting narratives that had made sense-making difficult. I made a 3 minute film of my health journey where I represent three narratives as vocal parts in the soundtrack, rising and falling as they gained dominance or lost ground. The film is a single black and white shot of my face with the health issues coming on screen as labels. The three narratives are:
Medical: illness is a technical problem to be solved by experts
New Age/Positive Psychology: healing is in your hands and is your responsibility
Initiatory: sickness is a difficult rite of passage which can bring valuable growth.
What I propose to do at this event is to show the film to initiate a discussion around the narratives of healthcare, with a particular emphasis on how to better ensure we help as many people as possible find meaning, learning, or post-traumatic growth from their experiences of sickness. As I have worked in Organisational Development roles within the NHS since 2016 (although currently on sabbatical for my studies), culture change and storytelling in healthcare leadership are also a part of my professional role so I welcome contributions from an organisational perspective.
Kimberly Littlemore Seeing dementia through the eyes of my parents: a series of films to support carers in collaboration with the Assistive Technologies Innovation Centre (University of Wales), Cwm Taf University Health Board and support from Teepa Snow’s Positive Approach to Care team. In November 2019 I was struggling to care for my parents who both live with dementia. I realised that I had to approach the management of their life in a more organised way or move them into care. I also realised that I was experiencing something that thousands of other relatives go through. Like me, most will have been sent home from a Memory Clinic or GP surgery with a bundle of adverts for stair lifts and incontinence pads but nothing to really explain what dementia or being a carer was about. I am a film maker and a storyteller so I decided to make a film with my parents to explain the challenges we were all facing. www.medic.video/dementia I collaborated with the Assistive Technologies Innovation Centre (part of the University of Wales) to see whether we could find a way to see the experience of dementia through the eyes of my parents. This desire was enhanced by going on a training course about dementia in which there was no actual contribution from people with dementia describing or demonstrating any of the challenges they faced. I thought I could fill that gap. In February 2021, I will deliver the first of ten films about caring for people with dementia at a virtual conference. These films are the result of funding from Cwm Taf University Health Board and support from an Accelerate project out of Cardiff Life Sciences Hub. We put CCTV cameras throughout my parents’ house in November 2019 and the cameras are still rolling. With consent at the top of the agenda I am now sharing my parents’ life experience and that of the carers who look after them to help demystify dementia and give those who live with and alongside the condition, a way to communicate with others.
Kath MacDonald ListenUpStorytelling is a Social Enterprise that supports those who care for others to care for themselves. Working with Dr Caroline Dickson at Queen Margaret University Edinburgh, we have developed an interactive resource for Nurses: CAKE- a recipe for self-care, wellbeing and team resilience-building. The project was funded by QNIS. Nurses are currently experiencing high levels of stress in their roles. Reasons include pressure of work, increased violence and aggression at work, lack of resources and control and moral distress. These reasons have been compounded by the Covid-19 pandemic. The aim of this project was to develop a resource to support nurses in the community to cope with stressful issues by sharing stories and developing strategies for self-care, well-being and team resilience. Using a combination of storytelling and practice development, we facilitated five creative workshops with eight Community Nurses (CNs) over five months. The programme was designed in three stages: consciousness raising; enabling action and; resource development. Crucial to this was creating a safe space together to share stories. Each participant was given a kitbag of creative materials to encourage storytelling. Some used these to do this e.g. Lego, fairy tales, digital stories, while others told oral stories. Stories were often hard hitting and emotional. Analysis of the stories through facilitated reflection revealed key issues and feelings experienced by CNs in practice. CNs then identified key actions in action plans. Plans highlighted self-care and well-being activities as well as team resilience-building strategies. These were co-developed into an interactive prototype: CAKE: A recipe for self-care, wellbeing and team resilience-building. CAKE consists of 7 slices which support the principles for developing self and team well-being. E.g. storytelling, reflection and action planning. Each slice contains an instruction sheet, with preparation required, and the ingredients and method for each activity. Additionally, participants developed a collective story of their experiences of the process and developed this into a digital story. CAKE is now ready to be tested further and developed from a physical to a digital resource. Participants reported transformational learning through the project and are already incorporating CAKE activities into their work practices.
Karen Taylor Royal Brompton and Harefield hospital has recently implemented a patient-led digital storytelling training programme to increase skills and confidences to lead local and hospital-wide quality improvement projects. This presentation will share progress and stories. Royal Brompton & Harefield hospital is a leading centre in the UK for the treatment of cardiovascular disease. In 2019, just before the COVID-19 outbreak, it launched its first 2-year Patient & Public Engagement Strategy. Based on NHS England’s own Patient Experience & Improvement Framework, it outlined aims to collect and analyse patient feedback to improve healthcare experiences for all. Patient feedback is understood to enable transparency, celebrate good practice and identify where improvements may be needed (NHS England). However, patient data is often problematic; it is perceived to lack validity; improvements may require unavailable resources and the organisation itself (or its culture) may be resistant to patient-led improvements (Sheard, 2019). Mandated surveys and patient feedback data are anonymous and impersonal. Stories are, instead, emotive and contain powerful personal experiences of healthcare. They provide access to a patient’s story enabling a clinician to understand “the nature of their problems, concerns and expectations” supporting health professionals develop patient-centred care based on their own identified priorities (Robertson and Clegg, 2018) In Autumn 2020 RBHT worked with two patient leaders to devise in-house training on digital storytelling for a cohort of 10 people (7 staff and 3 volunteers) which was completed in December 2020. The group has started to meet monthly for peer support and to continue sharing practice. It is anticipated that staff and volunteers will use these new skills and confidences to create their own local improvement programmes as well as supporting hospital-wide initiatives. In response to the results of the Care Quality Commission (CQC) Adult Inpatient Survey 2019 results, RBH has devised three improvement working groups which has included creating a patient story to kickstart the project. Issues covered include reducing noise at night, increasing awareness of how to feedback and reducing delays due to discharge.
Lucy Prodgers Lucy Prodgers, from the University of Leeds (supervised by Prof. Anna Madill & Prof. Brendan Gough), makes an argument for the development of multimodal social media case studies to enhance insight into the embodied reality of illness. Illness narratives, typically collected via semi-structured or unstructured interviews (Thomas, 2010), are used widely to explore how people with ill health make sense of their conditions. However, some researchers warn against the privileging of narrative over other forms of expression (Atkinson and Delamont, 2006). Although illness narratives are important, not all people are natural story tellers or always use stories to make sense of their experiences (Woods, 2011). Hence, it is important to identify and explore alternative forms through which the experience of illness is expressed and understood (Woods, 2011).
This provocation argues for the development of in-depth, multi-modal, social media case studies. I focus on the social media of men with Inflammatory Bowel Disease (IBD): an incurable and sometimes life-threatening illness which causes ulceration of the gut lining amongst other symptoms. Unlike interviews, data collected from social media is naturalistic and offers longitudinal opportunities to trace the unfolding of experiences and events in near-synchrony with real-time. Furthermore, illness can lead to a traumatising sense of disruption (Gomersall and Madill, 2015) and physical experiences, such as of pain and extreme fatigue, may be difficult to express in words (Gonzalez and Polledo, 2014). Social media’s facility to incorporate different kinds of text, such as music and images, and the accounts posted are often partial and fragmented (MacLaren et al., 2017). Hence, I will argue, social media case studies can provide rich insight into the experience of illness beyond that which traditional narratives alone can produce.
Larisa Sioneriu The Matt Talbot Community Trust is a drug free community education programme endeavouring to foster rehabilitation and reintegration in society of those in process of recovery from drug abuse. By doing so, we provide a quality education system and structured, person-centred supports. As a result of the roll out of various digital storytelling workshops at our centre, we identified promising benefits of this methodology in fostering rehabilitation and reintegration in society of adults recovering from drug abuse and corresponding mental health problems. Our contribution to your event will illustrate the ways in which digital storytelling can cultivate positive identities, empower marginalised adults, foster the sense of authorship and ownership, and generate collaboration and a community of practice.
At its core, a digital storytelling workshop consists of the creation of short 2-3 min videos that illustrate a personal story. In doing so, participants write their own story, narrate it and digitalise it through the use of images and sounds. The workshops are usually attended by seven participants and are conducted over 5-10 encounters. The stories are created in a collaboratively, in story circles and other methods of promoting a community of practice. These workshops culminate in a screening event where participants share their stories with each other.
Some of the main barriers to rehabilitation and reintegration in society of those marginalized by drug abuse, mental health issues and criminal behaviours, are raised by negative self-perceptions such as worthlessness, negative identities associated with past experiences, isolation, lack of self-esteem and lack of belonging to a community. By engaging in a digital storytelling workshop which enables the reconceptualization of the lived experiences and negotiating and deconstructing past identities and building new ones in a safe, communal space, participants overcome many of the obstacles they face in this process.
Our position is that digital storytelling workshops have the potential to help adults in their recovery from drug abuse through the creation of positive identities. We would cherish the opportunity to contribute with our experience in the conversations taking place in the UK health sector.
Dr Kate Mahoney Exploring the use of non-linear games to tell women’s stories from the past and enhance health provision in the present. This talk draws on research conducted by the Wellcome Trust-funded project ‘Body, Self and Family: Women’s Psychological, Emotional and Bodily Health in Britain, c. 1960-1990’ (University of Essex). Since 2017, the Wellcome Trust-funded project ‘Body, Self and Family: Women’s Psychological, Emotional, and Bodily Health in Britain, c. 1960-1990’ (Department of History, University of Essex), has been researching women’s everyday health experiences in late twentieth-century Britain. As part of this research, we have recorded eighty-five oral history interviews with women born between 1940 and 1970, to be archived at the British Library. In this short provocation, I will outline our experiences using Twine (an open-source tool for telling interactive, nonlinear stories) to develop an online “Choose-Your-Own-Adventure” game based on our interviews for the ‘Body, Self and Family’ website. I will show how utilising this digital storytelling method demonstrates the complex in which women have enacted agency to bolster their everyday health. The game illustrates the decision-making processes our interviewees have either adopted or negotiated during medical encounters; Twine’s nonlinear format has the ability to showcase the multiplicity of choices and decisions that women have to make in provisioning for their health and wellbeing.Developing this game has, however, raised several ethical concerns. In constructing characters for the game, we were mindful not to focus on a single research participant’s health experiences, as doing so would undermine their anonymity. Instead, we developed several character narratives that incorporated a variety of experiences discussed by our interviewees. I will assess, however, how representative a health narrative constructed from numerous voices is, questioning whether amalgamating the experiences of several women might depersonalise rather than showcase important aspects of their lives. Naturally, the stories we told in the game were influenced by Twine’s feature set. Exploring existing health-based games, including ‘That Dragon, Cancer’, I will consider the opportunities that other forms of software might provide for showcasing historical health experiences, with the view to enhance understandings of and provision for women’s wellbeing today.
Dr Nicola Abraham & Ruby Colley Interactive workshop and talk sharing digital applied theatre projects for older adults living with dementia through a collaboration between Royal Central School of Speech and Drama and Imperial College Healthcare NHS Trust. This workshop and talk will demonstrate new innovative digital arts practice and learning from a collaborative partnership between Royal Central School of Speech and Drama and Imperial College Healthcare NHS Trust. We are running over 6 digital storytelling, virtual reality, person-centred projects in acute hospital context for patients living with dementia across Imperial College Healthcare NHS Trust. This is part of a funded student knowledge exchange project in partnership between applied theatre (community theatre) undergraduate and postgraduate students from the Royal Central School of Speech and Drama, and the Dementia Care Team within Imperial College Healthcare NHS Trust. I am the project lead seconded to the NHS for two years for this project and Victoria is a member of our partnership dementia care team who is learning to facilitate and embed the projects into ward culture and wellbeing offers over this time. The remit of the project is to improve patient experiences in hospital, improve staff morale and upskill applied theatre students with tier 2 dementia training and hospital project delivery experience for social prescription and to be responsible informed practitioners to work with people living with dementia. This proposed workshop and talk will provide examples of practice with top tips and learning from our projects for attendees, in addition to shared multidisciplinary arts and medical discussion about navigating boundaries to the work, and making sure digital storytelling practice is accessible, exciting and cognitively stimulating for older adults living with dementia. This talk is also a call to action to address Amnesty International’s harrowing 2020 report ‘As if Expendable: The UK Government’s Failure To Protect Older People In Care Homes During The Covid-19 Pandemic’ which reveals the impact of the pandemic and the urgency for creative arts work in acute hospital wards, nursing homes, care homes and sheltered accommodation/supportive living with older adults living with dementia.
Stori Fi Stori Fi: My Story is an empowering engagement project that links people with the lived experience with those who care for them. We are activists with a Call to Action through Storytelling. Themed stories can be shared that inspire, include and involve others to consider making change. We are Stori Fi. Anne-Marie Bollen, Memory Assessment Specialist Nurse Hywel Dda University Health Board and her son Twm Bollen-Molloy, LGBT activist and Drag Queen. In a call to action, they discuss Masks, Covid, and Dementia. A conversation that can be performed or shared and used as a Learning Resource. Contains Welsh language, British Sign Language and subtitles. Sylwia, a Polish Mental Health Nurse working with older people in the community to help them conquer social isolation, mental health struggles and maintain good quality of life... A granddaughter, daughter and a mother supporting relatives from a distance... A single woman and a friend fighting to cope with loneliness and stress at the same time as being there for friends. Nicky, the lived experience. A younger brother dies. A grieving family, holding each other tight. Coping.... just. Covid hit. No contact, shielding, fear. A lump in my throat, a pit in my stomach and my heart held together with sticky tape. Nicky's story is grief, pain, love and hope. Nicky's story is everyman's story. Claire, a registered General Nurse. No longer caring for the sick, the elderly, the dying, the vulnerable. Trying to make a valuable offering to the world. A single parent, a daughter without a mother. Always finding herself in the liminal spaces. An exploration of what it is to reside in the spaces in between. Jodie, a Student Nurse, ripped from the cradle to the grave dangers of working in the NHS during a global pandemic. A first-hand account of the twists, turmoil and the tears, Jodie’s spoken word poem conveys the impact of an unexpected experience on a novice nurse – what she learnt and what she will never forget. We tell the stories that need to be heard, by those with a passion and drive to tell them.