Abstract from all contributors are listed here in alphabetical order by first name of submitting author
Alda Correia How are patient experiences captured, presented and understood through story? In three essential perspectives: 1. stories are an essential structure in our life experience as Lakoff and Johnson (1980) have showed in their study on metaphors and Bruner (1991) in his “narrative construction of reality”; 2. stories are present in the first explanation of the patient to the doctor, in the explanation of the case by the doctor to the medical team, in the written record of the case and in the making of the medical diagnosis (Montgomery, 1991); 3. stories are present when through representation, attention and affiliation (Charon,2008) doctors are able to understand and recognize the singularity of their patients/cases and to develop an intersubjective closeness with them, with the same purpose.
Anna Woolfe From the ages of 11 onwards, young people with Juvenile Idiopathic Arthritis (JIA) which often is described as an invisible disability, begin to go through a process of transition where they move from their paediatric doctor to an adolescent or adult rheumatologist. However, young people can fall out of transition and can struggle to maintain autonomous responsibility for their own health, often culminating in difficulty navigating not only their physical wellbeing, but sense of self, their mental health, and social isolation amongst peers. There has been a rise in support spaces, from Arthur’s Place Social, the National Rheumatoid Arthritis Society’s ‘JIA and Me’ website and Arthritis Care and Arthritis Research UK’s new campaign ‘Versus Arthritis’, which all offer web, social networking spaces and support forums to young people. However, isolation and misconception about this chronic health condition continues, with more young people voicing frustrations around public perception of Juvenile Idiopathic Arthritis and psychosocial barriers to having a ‘normal’ teenage life. By subverting Foucault’s medical gaze and by extending and challenging the medical standards of transition, I create radical artistic spaces using performance, digital media and zine making by which young people can voice their own opinions and cultivate co-creative, rhizomatic strategies in relation to their own personal transition journeys. Transition in a medical sense can include autonomy in medication taking, decisions around occupational therapy and navigation of diet and exercise. My wider, more meta expressions of transition in young people’s lives embody transition in friendships, puberty, sexual relationships, school, university and work. My practice research using applied theatre and arts in health methodologies interrogates not only the quotidian performance of Invisible disability, but also how, through practice research, participants can be empowered to speak up and out about issues that matter to them. By creating radical artistic spaces together, young people with JIA decide what they don’t want to say about transition, by choosing what they do want to perform or make. From the bedrock of Foucault and the notion of the clinical gaze, to the radical edges of arts in health methodological models articulated by Daisy Fancourt, I deploy contemporary arts in health literature, medical humanities, key performance theorists and through practice research the young people themselves, to co-create new conversations to enable young people with invisible disabilities a bigger, better and louder platform to talk about their experiences during transition.
Anne-Marie Bollen, Kirsty Hill and Sylwia Dzewulska 1 of us is about to stop. 1 of us is about to restart. 1 of us is about to start. 3 of us have a tale to share. One that has never been shared but has been around forever. The red brick walls you may walk past in your home towns and villages need recycling as we now have a new key to living.
Aurora Piaggesi Living With Chronic Wounds - A Storytelling Journey is a project created and developed by storyteller and filmmaker Aurora Piaggesi for the European Wound Management Association (EWMA), a scientific organization of health care professionals, doctors, nurses and podolgists, all interested and involved in wound management. The objective of this project was to enlight the real life experiences of patients affected by chronic wounds, through video-recorded interviews to them, to their caregivers and the representative of the health care institution, in order to give different point of views of the same situation, possibly focusing more on the human aspects than on clinical ones. The project started with the following question: “how much of an impact have chronic wound pathologies on patients' life?” To answer this question, during summer 2018, 15 patients with different ages and medical conditions from Italy to Finland, from France to Czech Republic and from Switzerland to UK were interviewed and filmed together with their doctors, nurses and relatives. Soon after the beginning of the project a problem of difficult communication emerged by the interviews, affecting not only the correct application of the good clinical practices, but also the understanding of the situation and the willing of healing among the patients themselves. Could there be a way to improve the communication between patients and professionals? What are the strategies to help the patients feel cared and understood and to improve the application of good clinical practice in wound management? Could Storytelling be the answer to these problems? Could it be the language that both patients, healthcare and institutions would share? The answer is probably yes, since in all the different settings in Europe patients, caregivers and relatives, with different pathologies and experiences, had only one thing in common: they all wanted to tell their story.
Bart De Nil Since 2016, FARO, the Flemish support center for cultural heritage, has developed guides and training programs specifically about the use of cultural heritage collections for well-being and health. Linked to this, athree-year program ‘Heritage collections, health and welfare’ was set up together with various partners from the cultural heritage and healthcare sector. Central to this program are six long-term pilot projects that focus on the use of heritage collections to improve the well-being and health of people and on measuring and evaluating the realized impact. Every good evaluation of interventions is based on a mix of quantitative and qualitative data. So, alongside gathering quantitative data with measuring tools like the UCL Wellbeing Measures Umbrellaswe organized focus groups, interviews and testimonials with the patients and clients who participated at the sessions. The results of the qualitative evaluations tell us not only something about the participants own perception of their wellbeing but also gave usvaluable insights and feedback about the interventions. To the extent that we have adapted the design of the interventions in various areas. I shall present the context, the gathering of qualitative data from patients and clients and which changes we made to the design of the interventions.
Bonnie Millar Creative writing has great potential as therapy for patients and also affords an avenue for transmitting patient stories. Original personal accounts and reflections of common and life-affecting health issues including chronic pain can provide relief and insights. In conjunction with a special edition of the BMJ journal, Medical Humanities, people with hearing problems, their partners or family members were invited to write poems and prose about their experiences of living with the hearing related conditions. Medical professionals working in the field are also encouraged to contribute their thoughts in the form of creative pieces of writing. Channelling creativity to communicate experiences of chronic pain likewise captured poignant, moving and witty accounts of people’s life stories.
The talk will be illustrated with a selection of creative pieces.
Cheryl Beer When I woke up one morning deafened by tinnitus, my voice distorted by a condition known as hyperacuis, both brought about by the sudden onset of hearing loss, I wondered if I would ever find joy in my life again, but from this dark place has grown something so beautiful, that is now helping others, too. I am The Sleeping Storyteller. I write stories in my sleep. It is less curious than it seems. Find out the physical reason why I write stories in my sleep and how I have stepped into what could have been a curse to make a deaf friendly, soul aligned way of living that not only brings me joy but also inspires and helps others.
Christina Wilson A spoken word performance of poetry written in response to the experience of anorexia during pregnancy. 1 in 7 women experience an eating disorder during pregnancy, but their story is not told as one of the greatest taboos. This performance will give a voice to my story, speaking what was the unspeakable.
Whilst a pregnant inpatient in an Eating Disorder Unit I used journaling, both privately to myself and to my unborn child, as a way to manage my feelings and find meaning. Since my children have been born I have written poetry to bring healing and to connect with myself as a mother, finding new ways to understand and accept myself and reach out. By finding a way to articulate my experience and share my story, I have found a way to heal myself; discovering that writing and sharing opens up a space for others to heal too.
There will be an invitation to reflect on the importance of writing as a way to manage distress, to bring healing and connect with the self and others.
Dan Yashinsky Following up on Dan’s keynote in 2018, he and Melissa Tafler, the founder of Baycrest’s artist-in-residency program, propose a workshop on how they have integrated the storycare approach into a range of clinical and long-term residential care programs of Baycrest. It has proven useful in many contexts, from one-on-one interactions with patients and residents, to groups that are co-facilitated by recreational therapists. This workshop will teach the basic ideas and practices of the three elements of storycare: storytelling, storylistening, and storykeeping. Participants will use personal stories, family lore, experiences from their healthcare and artistic practices, and traditional folktales to deepen their sense of how storycare can be applied in their specific role within healthcare. Special focus will be on care for the elderly, including those with cognitive and communication challenges.
Daniel Morden Everyone has preconceptions about how their lives will unfold. Based on the lives of those around us, we create a narrative for our future life. If we are unlucky we find ourselves in a room with a doctor who has to tell us that our narrative is obsolete, and that the new one is ominous and vague. The patient reproachfully demands certainty. The doctor cannot offer it. Often the patient goes into shock, or denial, or becomes indignant.
Surgeons and consultants are trained to a high degree to perform complex and delicate operations on the body. But they also need a whole other skillset in a completely different area- to speak to the patient in such a way as a way as to impress the gravity of their predicament withoutterrifying him/her so much they cannot respond lucidly. How does the doctor learn to present life changing news to someone they don't know? DANIEL MORDEN, storyteller in remission from cancer, speaks to Swansea Bay Health Board Clinical Director for Cancer Services and Wales’s National Clinical Lead for Palliative & End of Life Care, Idris Baker.
Eli Lea Even though research into the subjective experience of people with dementia has grown in recent years, there is still a need to explore innovative ways to listen to the stories of patients with dementia and involve them in research. In this talk Lea will present a visual arts-based research method used to involve and engage people with dementia in telling their stories. The arts based method is presented as an alternative mode of data construction and analysis within a qualitative research design that addresses some of the limitations of traditional qualitative research, which often privilege text and verbal interviews. The aim of the research was to engage patients with dementia in research about their lifeworld through a flexible participatory visual storytelling method. The method was developed as part of an artist in residency at a nursing home in Norway. The research aims at supporting the creative agency of people with dementia and stimulate their capacity to share their everyday experiences through collaborative art expressions.
The presentation will be a talk showing visual representations of the lived experience of dementia (photographs/drawings/collage/text) together with music/sound/voice.
The study is part of a PhD project about participatory arts practices engaging people with dementia.
Elspeth Penny Breathlessness (as the result of chronic respiratory illness, obesity or cardiac disease) has been described as the worst thing that can happen to a human being. Patients describe the sensation of breathlessness as an internal scream, evoking the fear and dread of nearly drowning or having a plastic bag held over your face. A repetitive experience, (often invisible to others, who can’t help you anyway) of staring death in the face. Breathlessness disrupts the narratives of normal life. It slows you down. Isolates you. It shrinks your world.
The workshop brings together three collaborators from the Life of Breath project: a GP, a theatre/arts&health practitioner and an anthropologist. Our aim in this workshop is to explore with the audience how GP’s can engage with the findings from an arts&health project exploring patient narratives of breathlessness. Over the last two years Penny and Malpass have collected over 80 letters written to the breath. The letters have helped patients explore their relationship to their breath and express their experience of breathlessness to themselves more easily. In this workshop we now move forward to explore how this work can support patients to locate themselves within their own treatment narrative as well as help GPs respond more sensitively to the narrative wreckage caused by breathlessness.
In this interdisciplinary workshop we will employ various methods, combining short didactic presentations with interactive and participatory elements including exercises from physical theatre and verbatim theatre techniques. We will begin by outlining how arts&health approaches are well placed to ignite what Greenhalgh has called ‘the clinical imagination’. We will then introduce examples of visual and written narratives of breathlessness from our work as a starting point for exploring how breathlessness (as written on the body) can be more easily ‘read’ by GPs.
Emma Barnard Founded in 2012 by artist Emma Barnard MA (RCA) and ENT (Head and Neck) consultant surgeon Mike Papesch, FRACS, the ‘Patient As Paper’ project is a collaboration between an artist and surgeons to investigate and demonstrate the patient experience and pathway. It encourages doctors, medical professionals and students to reflect on being a receiver of medical care and its impact on people, giving patients a “visual voice” and reflecting some of the harsh realities people endure in their pursuit of ‘getting better’. It deliberately avoids questionnaires and provides people with a ‘clean slate’ to express their thoughts, fears, aspirations and worries – all part of being in our healthcare system – and draws to attention the degree of depersonalization that inevitably occurs when people are hospitalised.
‘Patient As Paper explores photographically the meanings of silent biomedical artifacts such as notes, scans, micrographs and surgeons’ theatre drawings (be they on paper or skin). By inverting a patient and their notes, using superimposition and image processing, photography forces a critical reflection on patients’ and surgeons’ visions of each other, as objects and people’. Chris McManus, Professor of Psychology and Medical Education, UCL
The results of this collaboration are being shown in the touring exhibition ‘Patients As People’. Patients were invited to illustrate, through words or pictures, what the experience of being within the hospital environment felt like.
Justine Thompson, Macmillan Patient and Public Involvement Lead, East of England Cancer Clinical Network, says: ‘Some of the pictures show outward serenity – but the self-authored graffiti often tells another story. These photographs are a graphic reminder that every person’s health story is as unique and individual as they are and that every encounter with a healthcare professional is likely to be an unwelcome voyage into the unknown.’
Reflection on these images invites the doctor and other healthcare professionals to consider what the patient is expressing about their care. Some images are very literal, others less so. It is not so important that the viewer understands exactly what the patients themselves are thinking; the challenge for healthcare providers is to allow themselves the opportunity to ponder these images and, as a result, consider, in a novel, visual and artistic way, how the patient experience can affect us all.
Emma Lazenby Perinatal mental health issues can happen in pregnancy as well as in the first years of being a parent (antenatal and postnatal). Problems can affect new mums as well as dads, people with no history of mental health problems as well as those who have. The word perinatal simply means the time before and after childbirth. Around (peri) + childbirth (natal) = perinatal. Issues might include depression, anxiety, OCD, psychosis and post-traumatic stress amongst other things.Affecting around one in five mums and one in 10 dads, we ALL know someone who has been affected. Often people don't talk about it, or know why it is happening. Perinatal Positivity is a 6 minute animated film to emotionally prepare families-to-be. The film promotes mental wellness and helps people identify early signs of mental health issues around pregnancy and parenthood. It supports people to take positive steps to improve their wellbeing.
To ensure that the film and resources share a story that is accurate and reflects a range of experiences, support and self care strategies, we collaborated with a number of health professionals and people with lived experience, as well as running workshops, surveys and focus groups.
The project was supported by the Burdett Trust for Nursing, the Perinatal Mental Health Partnership in Innovative Education, Mother & Baby Trust, Bluebell Care Trust, the Foundation for Mother and Child Health, Tommy’s charity and the Institute of Health visiting.
We aim for the film to be seen by all parents-to-be through antenatal classes and to be shared by health professionals.Perinatal Positivity has been made to help new parents to be aware of the their mental health, and to spot the signs and get help early.
Director Emma Lazenby of ForMed Films CIC will introduce the project and share the film.
Eve Krahe Brief description This presentation details the design of a Storytelling Certificate for Health Administration Faculty at the University of Phoenix, intended to build competence in empathy. Background Viannini (2012) defines stories and storytelling as “communication tools … to make sense of personal and shared experiences…” (p. 935). Hsu (2008) describes storytelling as a “human universal” that “reveal[s] clues about our evolutionary history and the roots of emotion and empathy…” (p.46). Indeed, emerging neuroscience scholarship shows storytelling produces an empathy response in the physical sense, demonstrated by a synthesis of oxytocin in the listener’s brain (Zak, 2013). Rationale Storytelling in a healthcare sense is situated within the larger context of the Medical Humanities, an academic discipline investigating forms of narrative, art, poetry and music in cultivating affective competencies like empathy in healthcare practitioners. It is applied often in narrative medicine, the practice of soliciting and hearing individuals’ stories in the context of health and healing within clinical practice. It has not, however, been explicitly built into faculty development for those teaching in health administration, the non-clinical side of the health sector. In fact, empathy, heralded in the literature as a most desirable leadership competency (Wilson, 2015), is braided tightly into the clinical health professions such as medicine, nursing and social work, but it is lacking in health administration education and faculty development (Beader, Carter, & Harve, 2013). Purpose Through this project, we answered the call in the literature to provide opportunities to build empathy competence in health administration education. We built upon the above scholarship, extending the use of storytelling in an innovative way to strengthen health administration faculty development, training individuals in the theory and practice of storytelling toward mastering then modeling this empathetic practice for adult learners in health administration.
Fiona Collins & Vita Zilite At a Death Cafe, those attending, including hospice users, carers, staff and indeed anyone with an interest in these matters, meet over tea and cake to talk informally about matters to to do with death and dying.
For the past three years, Vita has arranged events , including a series of Death Cafes, as part of the UK wide celebration of Dying Matters Week, which is held in May each year.
In 2019, Fiona will invite those attending to share words and ideas to create a collage of poetry, prose and musings on the subject of death.
This collection, in whatever form it manifests, will be presented to the conference. Its form and content are as yet unknown. It may be readings, performance, or simply spoken word. Whatever its form, it will give us a fresh look at death from a variety of perspectives.
Ginny Topp “Cut” is a video lasting 3 minutes and 21 seconds referencing hand thrown ceramic vessels, the cutting of my hair and my body. “Between the Shadows and the Light” is a ceramic installation of damaged vessels, again as a metaphor of the human body and oﬀ cuts representing the eﬀects of surgery and loss of hair. During my MA in Fine Art, I was diagnosed with breast cancer and wished to reﬂect my lived experience of cancer and the treatment I received subsequently. I was plunged into a very diﬀerent and frightening, unknown and uncertain world and needed to express this artistically. My work is conceptually metaphorical and concerns the destruction of myself, both emotionally and physically in terms of identity and surgical rearrangement. My aim is to reach a wide audience to share my experience of illness in a way that is emotive but not too literal. The ceramic vessel has been used as a metaphor for the human form and in particularly my body. Simply put…. The female breast has to do with motherhood, feeding nourishment. Breast cancer means the end of that sustenance—it loses its functionality The ceramic vessel is to do with domesticity, a container for food or drink The deconstructed vessel cannot contain—it loses its functionality. Key themes running throughout my work are concepts of deconstruction, change and transformation and metamorphosis. My hope is to raise awareness, provide information and give hope to anyone diagnosed with cancer. As Carel writes “I share them in the hope of making illness a little less scary, less anonymous, by talking about what happened to me” (Carel, 2008, p18)
Griot Chinyere Nwaubani “Applying the Griot way principles for community health and well-being”. Talk Objectives What is a griot? What are the roles and responsibilities of a Griot? Is the role of the griot relevant in contemporary Britain? What are the benefits of a griot in a community? Can the griot principles bring well-being to the wider society in contemporary times?
Significance of Talk This talk explores the griot as an agent for well-being and social change. Once upon a time in an Igbo village the griot was a prominent factor in the health and self-actualisation of the community. The griot principles enabled and promoted healing. Ubuntu (Afrakan Proverb: I am because we are, we are therefore I am) an essential proverbial strength. Well-being and health are seen as a we affair, a community matter; Ubuntu. This talk analysis how marginalised communities living in Britain can use the ancient principles, embedded in the griot way, to journey to wellness, and maintain it. This talk adds to the wider conversation being had about health and well-being in Britain and the world. Health is not one size fits all. Britain is a very diverse and multicultural society with many ancient principles at play. The focus of the analyses is on how the griot principles can be applied to break the cycle of imposed negative stories, on communities who have been stripped of their original stories of identity, homogenised and assimilated. It is an exploration on how the griot way principles can be applied, so a legacy of effective community health becomes the new cycle; perpetuating happiness, prosperity and success?
The talk will apply storytelling principles that will inspire the audience to interact and actively participate in sharing their thoughts and finding solutions. A very engaging and inclusive exchange.
Heidi Dahlsveen In a myth in Norse mythology, the two ravens, Hugin and Munin, everyday flies out into the world. The god Odin is afraid that Hugin, meaning the thought, will not come back to him. However, he is even more afraid, that Munin, the memory, will never return. I am also afraid, I am afraid of losing the painful memory of my son dying, because the pain ensures that he once lived.
The focus of the paper is a storytelling performance that blends a personal narrative with a Norse myth about losing a child. The past view of the woman blends with the modern and highlights something invariable. Through grotesque realism (Mikhail Bakhtin), the artistic research look at the concretization of abstract ideas that manifest themselves bodily and the mixing of the private and the public, the past and the present to address the grief and frighten of losing the memory when someone close passes away. . In her expression, the author mix the personal and the academic using temporality, contrasts, interruptions and various physical placements. Through narratives and written and spoken polyphonic utterances, the author will clarify how the concept of artistic research can be linked to different academic meanings and how academia can inspire new artistic expressions to address a theme from different angles. In the blurring of the lines that separate art, academia and life, new knowledge concerning grief is found.
Heloise Godfrey-Talbot We are at an art workshop. My two-and-a-half-year-old daughter is wrapped up in some scrap yellow fabric to protect her clothes. Suddenly she jumps down from the table where she has been painting and runs bare-foot into a large space that has become available in the room. She flings her arms in the air and spins again and again repeatedly falling over and getting up again laughing. She is playing with what her body can do, she is finding new ways to experience the world, she is unapologetic about taking up space. I wonder ‘Can she teach me that?’
My mother is tired from her treatment and I am sat on the end of her bed like I did when I was a child. We are chatting about the day, the funny things my daughter has been doing and saying, what we are going to have for tea. We talk about the hot air balloon ride we went on together. I clung on to the ropes petrified I would answer the call of the void and fling myself off. She grinned the whole time, leaning into wind. I wonder ‘Can she teach me that?’
Through an exploration of movement across three generations (my daughter, myself, my mother) I will explore the similar bodily patterns that family members can fall into. I will gather video footage of what might be called my daughter’s ‘authentic’ movement and audio-record conversations with my mother about movement experiences in her lifetime. I am interested in the choreography of beginnings and endings and the moments where we have truly lived within the body. This work is less about the experience of a single patient’s story and more about acknowledging and celebrating the multiplicity of stories we each hold alongside any narratives of wellness or illness.
Jennifer Lunn Through my work as a Storyteller in hospitals with Read For Good, I have been developing a practice of ‘Story Collecting’ – scribing stories made up by child patients and siblings. The stories collected in hospital settings often speak volumes about the teller’s understanding of their own experience. Although they may be stories about sharks, pirates, princesses or butterflies, they often act as allegories for the child’s feelings and offer a window into the unarticulated emotional experience of the child.
Interactions begin with an offer to hear stories from my collection. I choose stories in a style requested by the listener or by a child of a similar age. I share a couple of stories and ask the listener their thoughts on them. I then ask whether the listener would like to contribute a story to the collection and explain that their story can then be told to other children in other hospitals. There is no obligation to tell a story and any story is okay. I will scribe whatever is told to me. No content is refused. Creating these stories takes the children out of the world of the hospital for a short time and the opportunity to control a narrative at a time when they have no control over their own can be hugely beneficial. This freedom is also the space where the metaphors to their own experiences begin to emerge, often without the tellers realising.
Through presenting some case studies I would like to show how the imagined narratives are metaphors for the personal narratives of the tellers and I would like to put forward ideas as to how this kind of story collection might provide insight for caregivers and potentially form part of a holistic approach to caring for children in hospital.
Joseph Sobol We will explore the nature and structure of patient stories as therapeutic tools for patients in managing their experience of illness, and as resources for carers in building therapeutic relationships and broadening their registers of empathy. When we encounter life-threatening illness in ourselves or with loved ones, it can seem like a sudden exile from the familiar landscape of the self to a terrifyingly unknown place of loss. In charting the return journey, it is helpful to bear in mind the landmarks of traditional story and myth. The patterns of traditional myths and wonder tales can give guidance, both in illuminating the unknown path and in reconstructing one’s physical and emotional migrations through the medium of story. The internal exile of illness has the capacity to render us mute, or to help us give voice to the common language of suffering. Drawing on many years of research with cancer patients and their stories, this workshop will guide participants to experience the congruence between personal and family illness narratives and traditional stories and myth, and to practice prompting, shaping, and retelling our own stories in the framework of the traditional hero’s journey. The workshop will begin with my own story of mapping the physicians’ paradigm of Diagnosis, Treatment, and Remission/ or Resignation onto the Hero’s Journey model of Separation, Initiation, and Return.We will discuss the varieties of hero roles expressed in illness narratives (i.e., Victim, Sage, Warrior, or Priest). We will start the interview training process, breaking the group into small groups of 3-4 and exploring a series of structural prompts (Precursor stories, Determining Encounter or Diagnosis stories; Making Treatment Decisions and Living Through Treatment; Reflections on Recovery or Resignation). Examples will be given and shared in small and large group exercises, allowing participants to internalize the framework and methods.
Josie Crawley This talk explains how different client narratives are used to help nursing students consider nuances of meaning. Firstly a picture book that explores grieving for a son; and secondly, diary entries from a stroke recovery autobiography.
The central core of nursing is caring, requiring empathetic, compassionate practice. It’s a big ask of a sheltered student, to sit with a dying patient, to walk alongside someone with a chronic debilitating disease, to understand what a client means when they say they are fatigued, or why someone might respond angrily when you are helping them. Client narratives help fill the space between student knowledge and client experience. The sharing and discussion of client narratives adds a personal voice to theory, an interpretation of what health and change might look like through a client lens.
In this presentation I will share a model for working the client narrative. The narratives themselves are powerful, but the discussion scaffolded about them turn an emotional touchstone into nursing cues of how to explore meaning and be with the person in partnership – rather than doing things to the patient. The model leads you through these stages, using the narratives as a basis for student critical thinking and reflection, pearls of meaning that make a lecture real, that supply an alternate perspective or challenge the student to see the gaps in scientific knowledge.
I cannot give justice to each client narrative in such a short presentation, so will dip in and out of the client stories.
Julia Lockheart & Mark Blagrove We ask a participant to come and have their dream discussed, interpreted and simultaneously drawn onto pages taken from Freud’s book The Interpretation of Dreams. The dreamer tells the dream and discusses it with Professor Mark Blagrove, the audience listen to the dream and discussion. The drawing is carried out live and presented on the screen so that the audience can see it; the dreamer and Mark Blagrove cannot see that screen as they have their backs to it, in this way the drawing process does not interfere with the dream telling and interpretation. A second level of interpretation comes at the end of the session through the viewing and exploration of the artwork and the invitation to the audience to participate in the final discussion about implications of the discussion and artwork for insights and revelations for the life circumstances of the dreamer. The dreamer is later presented with an enlarged Giclée print of the artwork, with the text of the dream embedded into the mounting board (see accompanying image). We have found that displaying of the artwork encourages discussions with friends and family members and we are researching the hypothesis that this enhances wellbeing, and empathy between them. There will be some disclosure by participants of aspects of their recent life, including emotional aspects. We will ensure that this is done in a collaborative, respectful and voluntary manner, which takes into account that members of the public, and family and friends, may be in the audience. Participants will be reminded where necessary that self-disclosures will only occur when or if they wish. The activity has been approved by the ethics committee of the Department of Psychology, Swansea University, and all aspects of the procedure follow the ethical guidelines of the British Psychological Society. We have run these performances at many venues and have never had any issue with discomfort or distress of participants.
Juping Yu & Gareth Parsons In recent years, public investigations and reports such as the Francis Report (2013) have revealed serious failings in compassionate care in UK hospitals and care homes. Current health and social care policies have increasingly emphasised the importance of nurturing qualities such as caring, compassion, empathy and dignity among healthcare staff providing patient care. Health professional education and training has a significant role to play in this and it is important that education approaches maximise the opportunity for learning and reflection.
We have worked with a creative partner at StoryWorks UK and Cwm Taf University Health Board to produce a short digital story about a patient’s experiences of being in hospital. Using QR codes has enabled us to develop a learning resource package in the form of a story walk. Nine story segments are linked to different locations around the University of South Wales Clinical Simulation Suite which is designed to look like a typical general hospital.
When walking around the simulated hospital environment, nursing students can follow the patient’s journey from diagnosis to discharge and listen to audio recordings recounting the patient’s experience of care in her own voice. We have been testing how the resource can be used in a training setting to promote learning and reflection on patient care among nursing students. Development of the story walk and findings from the educational intervention will be described.
Katharine Low A 2018 UNAIDS report called for ‘bold leadership to tackle the [HIV] prevention crisis’, noting that ‘Women and girls must have the knowledge and power to protect themselves against HIV in safe and enabling environments and must be able to access services that meet their needs’ (UNAIDS 2018). While this call has been heard in South Africa, access to supportive and non-judgemental healthcare services for young people remains compromised. Hillbrow, the location of this project, is a high-density, high-rise inner-city area affected by the rapid influx of urban migration, high levels of crime, poverty, unemployment and urban decay. A 2014 study found that 36.6% of adolescent woman in Hillbrow have experienced intimate-partner violence (IPV). The study concluded that within Hillbrow, witnessing or experiencing IPV has significant impact on young women’s health, namely increased substance abuse, experience of mental health problems, transactional sex and unsafe sexual practices (Decker et al., 2014).
This paper considers a partnership project between the Hillbrow Theatre Project (HTP – http://www.outreachfoundation.co.za/index.php/programmes/hillbrow-theatre/about-the-hillbrow-theatre) and the Royal Central School of Speech and Drama, in collaboration with the University of Witwatersrand Wits RHI Hillbrow Health Precinct (www.wrhi.ac.za) in South Africa.
The paper explores how the young people from the HTP worked with and responded to the practices in place at the local health clinic (WitsRHI). The paper discusses some of the challenges facing the youth of the Hillbrow area in Johannesburg to contextualise our project’s focus and intentions before sharing the process and performative outcomes of the project which included the development of short scenes (filmed) promoting the innovative practice of the local clinic but also of the young people’s dream clinic – the ‘Yolo Clinic’, and their poems about their aspirations and hopes for young people living in Hillbrow.
Kathryn Watson I am a doctor and a visual artist, and I am passionate about the integration of arts and health. In particular, I believe that autobiographical storytelling through the arts holds immense power to facilitate communication, to change our perspectives of health and disease, and to aid healing. Two years ago, I was diagnosed with borderline personality disorder (or emotionally unstable personality disorder), depression and anxiety. Over the past year, I have been illustrating my struggles with mental illness and my journey through schema therapy. This started as a means of self-expression and exploration. However, the wealth of positive feedback I have received from service users, therapists and others within the graphic medicine field, together with my own experiences, has shown me that this type of communication could have potential for significant impact. In essence, I want to use my work as a medium through which to improve understanding of mental illness, particularly personality disorders, and to shed a light on the process of emotional healing that can be achieved through emotion-focussed therapy.
Kathryn Aldridge-Morris During hospital consultations patients are supposed to absorb complex information and very detailed instructions for complicated medical regimes. However, they are often too frightened or shocked to process much of what is said. Carers of relatives with life-threatening illnesses are the ones left to pick up the pieces and fill in the gaps once the clinic door has closed. But who picks up the pieces for the carers?
In my talk I explore how expressive writing and creative journaling can be powerful tools for self-care. I share extracts from my own journals scribbled during the hours spent waiting in hospital corridors and in the side-wings of consultants’ rooms; poetry, metaphor, free-flow writing and free-fall writing, unsent letters and unsaid words. I describe how my writing, often tinged with dark humour, has become an outlet for my feelings and a container for holding this experience, and so enabled me to stay well enough to support my mother through her journey with multiple myeloma.
Furthermore, I hope my writing will open up conversations around both the way medical professionals interact with patients and carers, (and the impact of language choices on patients and their families), and also around the design of hospital spaces that we have to spend so much time in.
Katrina Glaister This talk highlights work that explored how patients/relatives felt about presenting their story to the Trust Board of a district general hospital in the South of England; and how changes were made to the process as a result of their feedback
Kathryn Mannix ‘Narrating Death: time to reclaim our forgotten wisdom’ We’ve forgotten about dying: a process that was once familiar, took place at home and was recognised by everyone has become a medical failure, a ‘never event,’ a truth that dare not speak its name and a word associated with terror or distress. After forty years at the bedsides of the dying, I am telling their stories. Stories that make the process familiar and manageable; narratives that show how dying people are mainly just getting on with the living that’s left; tales to lift the taboo and restore the wisdom we have lost. It seems these are stories people want to hear. My book, ‘With the End in Mind,’ became a best seller, was shortlisted for the Wellcome Book Prize and was Times ‘Thought Book of the Year’ 2018. I am astonished and delighted. Join me to claim back our shared understanding of dying: a process as natural as birth, as unavoidable as breath, and probably far more peaceful than most of us expect.
Leah Salter Following the last storytelling in health conference (2017) where we talked about the power of personal storytelling; we were inspired to act on our experience of sharing those stories and the feedback we received. As a result, we set up, alongside Arts in Health and the Systemic Psychotherapy Service in Adult Mental Health, ABMU Health Board, a digital storytelling group for women who have been impacted by some of the challenges associated with mental health, abuse, oppression, adversity. The focus was on stories of resourcefulness, resilience and overcoming adversity. The group produced their own personal digital stories which they could share with others to influence practice. Following on from this the same women pooled their resources to produce a digital story that captured aspects of each of their stories, creating a collective story of hope and overcoming life’s challenges. We would like to share this story. We would also like to share some of the traditional stories that have inspired us in our creative endeavours and some of the personal stories that have kept us meeting as a group of women to explore the edges of our own creativity. We will also share our own narratives of personal transformation through coming together; taking you with us on a journey that speaks to development. The group has become ‘creative journeys’ and supports connectivity, creativity and collective transformation through narrative means and is an ongoing resource for the women who attend.
Lee Aspland I teach mindfulness through photography to students who have experienced a significant health change in their life. My innovative approach encourages students to become present with the moment, and this paying attention leans towards an understanding of the thoughts and feelings that the students experience in any one session. I teach the students how to represent these experiences through a photograph. Their favourite photos are shared in a safe group environment, with the encouragement to explain why they created the photo and what it means to them. Over the period of the course stories of the students’ lives emerge and the individuals have the opportunity to process and move towards the acceptance of their life experiences.
This year I am also producing a Photography Project in partnership with the Swansea Bay Health Board Arts in Health team and the Elysium Gallery. Its title is ‘Who Am I Now?’ and it will produce up to 15 diptych photos that illustrate a patient’s understanding of who they are before and after a significant health life change. The two photos will be produced in collaboration with the patient. One will represent their sense of who they were before their significant health change, the other who they believe they are now.
My talk or workshop will flesh out this experience. The workshop will share some techniques and Mindful Photography practices.
Lijiaozi Cheng Categories like disease and health sometimes appear to be quite concrete and at least most of the time we pretend they are. However, there are times when we are not so sure. We may feel we are not very well – but no that unwell to be classified as a patient. Sometimes, we are simply in that middle space being not too healthy, nor too diseased, where we are not completely sure about our identity and our autonomy. In this talk I tell my own experience of being unwell, but not too unwell, negotiating between the two states, which lead me to reflect on what health and disease are, and whether thinking of a third category (sub-optimal health, pre-clinical condition, whichever way you might prefer to call it) might be helpful, and how this is entangled with my identity as a researcher.
Lynne Walsh Writing about our lives is not always about “telling the truth.”
More and more research* shows us that writing about ourselves can bring benefits to our physical and mental health.
You may think it’d be nice to write your life story, before you die, perhaps as a little gift for your loved ones, to complement the ‘family tree‘, the photo albums, and the scrapbook.
I’ve taught hundreds of people who have delivered the detailed chronology of their lives, or harrowing stories of their grandparents’ lives, or their own struggles.
In my work with learners, especially those affected by cancer, addictions, trauma and loss, I see the benefits from “controlling the narrative.”
I’ve advised: “Exaggerate if you like. Hide the disappointments and the mediocrity. ‘Confess’ if you want to, but don’t feel obliged to tell the truth, the whole truth and nothing but the truth………”
Writing memoirs involves recalling memories, unique to each of us. Our emotional actions and reactions, then and now; we’re the only ones who can ‘capture’ these.
This is about control – and freedom.
The best stories carry emotional charge; there is emotional truth, describing times we were afraid, uncertain, in love, betrayed, disappointed, hopeful or thrilled.
Most of my learners have stories from their families and communities - moments when they discovered a secret or understood, for the first time, why they had been told a lie.
Sometimes, the jigsaw doesn’t fit together, or there are missing pieces. ’Creative’ writing can plug these gaps. We can create different endings.
And here’s the bitter-sweet ending: using this writing process seems to help learners to commit to the truth. They enjoy exaggerating, producing fantasy versions of their lives - then they write an honest, sometimes brutal, no-holds-barred life story. The results have taken my breath away, time and again.
Lyndsey Bakewell & Mike Wilson The public profile of mental health has increased in the recent past, with more attention being given to the management and mitigation of issues. However, there remains a need for a greater understanding of the varied and individual impacts of mental health.
This paper will reflect on the use of storytelling across three inter-disciplinary RCUK/GCRF projects:
Loneliness in the Digital Age (2014-18) investigated experiences of situational, or transient loneliness amongst three groups of people, carers, students, and lone workers, through visual storytelling and digital design. The paper will demonstrate how loneliness and connected mental health challenges, e.g. depression and anxiety, are compounded by shifts in day-to-day living arrangements, new work/social commitments, and entering new phases of life. It will discuss the creative processes we used to co-create technological interventions.
Creative Practice as Mutual Recovery (2013-18) explored how various creative interventions might aid mutual recovery between service-users, service-providers and informal carers in the context of mental health challenges. The paper will focus on storytelling, ‘Digital Dialogues’, reflecting on how the project allowed stories themselves to be recovered and to question the existing relationships of power that can exist in traditional clinician/patient relationships.
MeHelp – mental health literacy and the performing arts (2018-2021) is a new project that unites theatre and storytelling academics, practitioners and mental health specialist to address the issues of mental health literacy in Kerala, southern India; one of the wealthiest regions of India, with one of the highest rates of mental illness. We’ll report on progress, contextualising it within the wider context of our work on mental health.
By presenting the finding of these projects, this paper will explore issues of community, empathy, and trust, identified during the projects, to understanding how sharing stories and experiences can build connections between people to aid mental health support, management and understanding.
Lynne Watson & Rachel Hunter The Neuro Inflammatory Service have provided information days for people with a new diagnosis of Multiple sclerosis since 2006. A Neuropsychologist has had an integral part of this information day delivering the session ‘Coping with a diagnosis of MS’. In 2018 the service delivered ‘Living Well with MS’ a day designed to help people who have been living with the condition for many years. Dr Rachael Hunter, Senior Lecturer (Swansea University) was invited to present at this day as she was happy to share her personal experience of living with MS.
Dr Hunter’s professional background, combined with her personal journey provided a unique opportunity; she was able to create a high quality session drawing on her own personal story. Importantly, her talk was underpinned by relevant psychological concepts to provide an evidence-based yet personal explanation of how people could build resilience, promote wellbeing and live well with MS.
The evaluation of the day was extremely positive, patients felt the talk was inspirational, motivating and thought provoking. People felt reassured listening to a person who is also living with MS and can understand what they are going through. They stated it was an honest and genuine account of her experience and thanked her for her involvement in the day. Following the impressive feedback from this event, Dr Hunter has also become involved in the Newly Diagnosed Information day and the positive feedback continues.
Dr Hunter’s approach promotes making small sustainable changes to lifestyle to promote wellbeing following this life changing diagnosis. The collaborative working between our team, MS Society (MS Cymru), Swansea University and our patients led to this small but significant change to the programme that has vastly improved the feedback received from our patients and hopefully their experience of living with Multiple Sclerosis.
Our presentation will be within the allocated 12 minutes and delivered by Lynne Watson, Clinical Physiotherapist, a specialist nurse and Dr Rachael Hunter to explain in greater detail the journey to inclusion, and impact of, a patient story in our information days.
Mandeep Singh Recent work in the arts and health has shown the utility of socially prescribed music interventions for people suffering from poor mental health. Urban music (hip-hop, RnB, grime, soul, etc) is a dominant force in contemporary popular culture, with some organisations offering specialists services in this area. There is a paucity of research in the field which we seek to address through an innovative mixed-methods approach.
The current pilot study used a both ethnographic and quantitative approaches with Key Changes, a social enterprise offering community and psychiatric ward based music facilitation services. Ethnographic study through in-depth interviews (n=10), analyses of song lyrics and participant observation over 9 months were employed to allow a thematic analyses of the efficacy and mechanisms of Key Changes. Some key themes included: 1) Social and cultural reintegration, deepened through participants implicit knowledge of urban music subcultures; 2) Finding meaning in struggle by externalising narratives; 3) Increasing personal responsibility and efficacy by offering career development opportunities; 4) The search for mastery leading to meaning in life; 5) Musical compositions acting as reminders of one’s capacity to flourish.
The quantitative arm of the study examines changes in heart rate over the course of a session of rap writing and recording in Key Changes who use rap as their medium, mostly with a strong personal narrative leaning (N=5). A novel approach syncing qualitative observations of the writing process with cardiac activity was used. Patterns observed in some artists include: 1) Increases in cardiac activity during periods of reflection before writing; 2) A lowering of heart rate to below-baseline after completion of the song. These findings are preliminary and will be refined and explored during further planned sessions.
Mette Bøe Lyngstad Many substance abused people have experienced to be judged for their past or their way of living. How can we through drama get to know their stories, explore these stories through theatre, express them through storytelling and present them in a performance for an audience? How can a focus on delegates dreams prepare them better to deal with their daily life?
The storytelling group DREAMCATCHERS was established in 2017 and have for two years been working with storytelling. Their performances has excited the audience in several communities.
In these paper presentation Lyngstad will introduce you to her research project with substance abused and their next to a kin.
Miranda Quinney I presented Sharing Stories for Wellbeing ( SS4WB) , the framework I have developed to facilitate the sharing of life stories at the 2017 Storytelling for Health Conference. Post presentation Q+A included a discussion of the rights of family members to access the stories recorded in the course of the SS4WB sessions after the death of the teller.
More recently as part of my studies as a KESS 2 PhD student researcher at the University of South Wales, I have been wrestling with the practical implications of using unstructured interviews as a methodology for data collection. Britten ( 1995) warns that a truly unstructured interview may result in failure to address the research question. A suggested solution is to adopt a loose structure such as an aide memoire to help ensure focus.
As I reflect on the issues raised in the story sharing session and in my consideration of the use of unstructured interviews form a research perspective, I realise I am faced by similar questions. 1. who controls what is shared ( Jovchelovitch and Bauer , 1996) 2. how does the identity of the listener have an impact on the interviewee’s decision of what to share and how to share it ( Mishler ,1991 as cited in Poland and Pederson, 1998)
In this presentation I will share the feedback I have received as a storytelling practitioner on ownership of the story and control over what is shared and consider questions of control and ownership when gathering data via unstructured interviews from an academic perspective. I will seek to identify whether there are comparisons to be drawn between the two activities.
National Theatre Wales In July 2018, National Theatre Wales, Gwent Arts in Health and Designer and Facilitator Becky Davies collaborated on As Long as the Heart Beats - a project which took place in The Royal Gwent Hospital, Newport. Commissioned by National Theatre Wales as part of their festival celebrating the NHS’s 70th birthday, As Long as the Heart Beats evolved from an open call to people across Wales to share their experiences of the NHS. Stories were gathered from staff and patients across the country, and this dialogue continued as the project developed into a site-located performance in the Main Outpatients Department of The Royal Gwent Hospital. Becky Davies collaborated with Co-directors Ben Tinniswood and Marcus Romer and BAFTA Cymru Award Winning Composer Tic Ashfield to create an immersive and engaging theatrical production which reflected the stories not only in content but in practise; workshops were held in the department where patients and staff could create original artworks or record their heartbeats to be woven into the soundscape. The resulting project was a rich and layered reflection of staff and patient experiences of the National Health Service. In this presentation Becky Davies, Sarah Goodey and Claire Turner will reflect on their different perspectives of the project, the challenges they faced and overcame, and what they learned from working together.
Nick Andrews Health and social care policy in Wales places a strong emphasis on prevention and well-being through integrated working and co-production. However, these important themes are easier said than achieved. In two areas of Wales local people from statutory, third sector and community organisations have been working together in partnership with the Wales School for Social Care Research, to develop a meaningful and joined-up approach to prevention and well-being with storytelling taking centre stage. They have been using an approach called Most Significant Change (MSC) technique (Davies and Dart 2007), which has emerged from complex community development in other parts of the world. The MSC process facilitates the systematic gathering and use of real life ‘change’ stories that have come about as the result of a particular programme of work, in this case prevention and well-being development work. Once gathered, these stories are discussed and explored within multi-agency story selection panels, including people who can influence policy and practice. Research has demonstrated that the quality of dialogue in these panels is important in ensuring meaningful outcomes from the MSC process (Limato et al., 2018). The development work has therefore strengthened the story selection panels, by using a tested dialogue-learning technique called Community of Enquiry (Golding 2015). New knowledge has been generated by this study, both around what matters most in prevention and well-being development work and how to use stories in a systematic way to facilitate learning and development.
Penelope Foreman What does it mean to live in the Land of Song if you feel disconnected from it – if all you know of the past is history lessons you never engaged with, if your experience of the Welsh landscape is limited by poor transport facilities, your own mental and physical health needs, a lack of community to support and engage you, and the fundamental feeling that it isn’t a space for you? What does archaeology mean to you if all you’ve been shown is a few people digging in the earth? What if you never felt artistic or able to be creative with confidence?
Archaeology and art intertwine to tackle these issues – to let the songs of the land be heard by more people, to bring individuals and groups from any background into the landscape and experiment with ways to let their voice be heard. Clwyd-Powys Archaeological Trust are running a series of events and activities that aim to improve mental wellbeing – and along the way develop meaningful connections to the land, the past, culture, heritage, community, and song. From designing accessible tools and fieldwork techniques, to undergoing yoga and mindful movement at historic sites, to inviting isolated and marginalised groups to partake in free-flowing, outdoor and indoor creative art sessions inspired by artefacts and objects, to tackling food poverty in ways that embed playfulness and creativity in their design and implementation. Significant new and innovative ways of working are in development that embed playful practice, non-judgemental attitudes, a commitment to equality and diversity, and the preservation of heritage from all communities and cultures in Wales through a blending of art, academic study, archive, and archaeology.
This work is presented in the form of a performance poem and visual installation, featuring words and art from some of our participants.
Pip Hardy & Tony Sumner Pip Hardy and Tony Sumner founded the Patient Voices Programme in 2003. Their intention was to facilitate the creation and sharing of digital stories of healthcare that might augment, enhance and balance the quantitative data that informs decisions about how healthcare is designed and delivered, how staff are educated and how care outcomes are evaluated. Since then, over 1200 stories have been facilitated, educational programmes developed, research conducted, papers written, books published, awards won, lessons learned and friends have been made. Patient Voices digital stories are first person, reflective, multimedia creations. Their meaning, grounded in the storytellers’ experience, distilled into their own tacit, social and cultural knowledge and couched in their own language and that of the medium, connects them to their audience as ‘activist memes’. Within healthcare there is a systemic hierarchy of voice and story that underpins epistemic injustice within the system. Doctors’ voices, despite being few compared to patients’ or carers’ voices, colonise the higher platforms of this hierarchy, and dominate the healthcare debate. The release of Patient Voices stories ‘into the wild’ via www.patientvoices.org.uk carries storytellers’ experiences and language into the debate, validating their gender, ethnicity, class, sexuality and political experiences of care, thus ‘inverting the pyramid of voice’ that manipulates and controls the care debate. Our journey has sought to change the language of patient experience from statistics to stories, from harvesting and gathering to facilitating and sharing, from subject to author, from ethnography to auto-ethnography. Now we are seeking to bridge the gap between an instrumental language of objectivity/impact/effectiveness and one attendant to the complexity and elusiveness of lived experience more holistically drawn. This presentation looks back over our 15-year journey, reflecting on experiences, drawing on highlights, illuminating some lessons, sharing some digital stories and anticipating where the journey goes next.
Rachel Hawley This session will share learning from my doctoral study, which I am completing at Sheffield Hallam University; an exploration influences on leadership for public engagement in healthcare. I aim to show new insights into how leaders construct and sustain their identities for engaging with patients and the public. The session would begin with a short presentation on my study, which forms a bricolage of ‘narrative’ ‘visual’, and ‘reflexive’ methodologies enabling these complex issues to be viewed through multiple lenses. The presentation will provide an introduction to a group discusion. Delegates will be invited to engage in interactive discussion (and activity) to explore the value of storytelling from a range of perspectives.
Rachel Taylor-Beales I am able to offer a performance surrounding my personal experience of storytelling for my own wellbeing and recovery after experiencing physical injury, birth trauma and perinatal birth issues. I can also share the findings of my work on these subjects with women, based in Wales and also around the world. Stone’s Throw, Lament of the Selkie A performance of song, story and visual image: connecting ancient myth and modern mortals. Riding the tides of trauma and loss in a common quest to find the skin that fits. Written and performed by…………Rachel Taylor-Beales (Musician/Performer/Storyteller/Writer) Performer and additional composer/writer…Lucy Rivers (Performer/writer/musician – Co-Director of ‘Gagglebabble”) Directed by …………………………………….Louise Osborn (Director/Writer/Dramaturge/Educationalist and Mentor)
Following a successful research and development project funded by the Arts Council of Wales, Rachel is currently applying for a Large Grant from ACW to create a full touring production of this show to coincide with UK Mental Health awareness week 13th-19th May 2019. Extracts from the Stone’s Throw, Lament of The Selkie R&D performances https://vimeo.com/279143436 Women’s Voices Stone’s Throw, Lament of The Selkie R&D project https://vimeo.com/26208597
Rahul Mittal England is undergoing health demands due to the ageing population and must quickly adapt. The Five year Forward View (FYFV) document has brought integration and prevention to the forefront. The NHS is now rapidly adopting a patient centred approach of working and in delivering care nationally. There is growing consensus of the importance of prevention and keeping patients independent and healthy and their care needs as low as possible. If a person’s health is managed holistically and illness can be prevented, if a person is involved in decisions about their care, not only is that person’s experience of care and outcomes better, it also means less pressure on the system. There is growing consensus in creating a system of integrated care and support that it will work better when it is built around the needs of the individual. This situation also applies to many other groups of disenfranchised and vulnerable people, many who present at local community charities to seek help.
The voluntary sector is on the front line in terms of hearing the stories of many in our communities who struggle to have their voices heard: immigrants, older people, vulnerable and isolated people, asylum seekers, immigrants, ex- prisoners and those whose identity has been dislocated through changes in employment, financial circumstance, health, disability or abuse. Our conference proposal for Cardiff next June ... theme is Storytelling and its impact on national health”
Home is where we are safe to be who we are (and who we have been in the past and who we may be in the future). It is a place where we feel connected and cared for. It is a place where we have the opportunity and the encouragement to grow and thrive. Storytelling is fundamental to the development of a sense of home and something about how that improves health or develops preventative health outcomes.
Sarvenaz Sohrabi Painting has been demonstrated to have a beneficial impact for people when representing their state of mind/body in a visual way, allowing them to produce an image that everybody can relate to. In the past, researchers collected various paintings from people dealing with chronic diseases (Kirkham, 2015). Art therapists believe that the process of painting supports people in expressing and shaping their own emotions which otherwise would stay abstract, hidden, and could affect their mental stability (Edwards, 2014). Our project is going to provide a better representation of pain and create a network of communication between members of the public. The aim of our project is to ask the public to paint their pictorial representation of pain related to any illness directly or indirectly connected to the person. We are interested in analysing artworks collected by detecting differences in shapes, use of different colours, different types of brush strokes, size of the drawing, and so on. This will allow us to communicate to the public how pain linked to illness affects everyday life. Each painting tells the story of different pains. Following our analysis, the artist will then use the paintings to produce artworks summarising different visions of pain in the form of visual art, audio art and performances presented as part of exhibitions and festivals.
1. Kirkham, J. A., Smith, J. A., & Havsteen-Franklin, D. (2015). Painting pain: An interpretative phenomenological analysis of representations of living with chronic pain. Health Psychology, 34(4), 398. 2. Edwards, D. (2014). Art therapy. Sage.
Stephanie Dale A woman walks into a wooden hall in a small Outback settlement 200 kms from anywhere – she is bent, huddled over her walking stick, leaning on her husband. Two writing workshops later she leaves three inches taller, no longer leaning on her husband, swinging her walking stick.
What happened in those few hours to change this woman’s sense of wellbeing so dramatically?
The Write Road has an answer: Faith - in the validity of her own potential.
The woman was invited to raise her voice. She became visible - on her own terms. She named – and claimed – not just her story, but her right to tell it.
The Write Road is an award-winning Australian wellbeing initiative that uses an available resource (literacy) and accessible tools (pen and paper) to encourage isolated people to tell their story, their way.
For five years, founder Stephanie Dale has been stalking the power of stories for good health. In that time, she has found that just about everyone longs to write and share their story – and that just about everyone needs guidance, encouragement and support to start.
The Write Road is not an expedition to unearth talent. Our mission is recovery - recovering human voices that have fallen silent, recovering spirits suffering for lack of hope, recovering the will to claim what is rightfully ours: our story and our right to tell it.
This project has pioneered writing for wellbeing in isolated communities in rural and remote areas of Australia. Stephanie’s work has reinvigorated relationships in small communities. Through hearing patients’ stories, significant numbers of people have learned new things about people they see every day in their community. New conversations have been ignited among family members, neighbours and friends. People have shared vulnerabilities. They are newly equipped with tools and resources to meet the challenges of everyday life.
This is the power of storytelling for health.
Steve Blackburn & Carol Rhodes This talk shares the journey of how two people met and shared similar challenges relating to stories which are recognised as significant to inform the delivery of high quality care. This resulted in a project to compile a clear and concise evidence based toolkit with the purpose of facilitating a supportive approach to the identification, collection, mode, support, evaluation and process of proactively utilising stories in health.This was achieved by working in partnership with acknowledged experts in patient and public involvement and engagement, practice, research and education. Firstly a comprehensive review of the published literature was undertaken to establish a benchmark for good practice.A scoping exercise also took place to identify any undiscovered frameworks currently in use.A content analysis of these findings was undertaken including lay members, patient and public involvement advisors, clinicians and academics. This information informed the development of an evidence based draft toolkit for testing and evaluation of use in practice and education environments by interested clinicians, educators, voluntary and patient groups. Based on the collective evidence and evidence based practice to date, the toolkit intends to be a one stop point of reference reducing time in searching for appropriate information with the aim of supporting: commissioners (e.g. in commissioning for a positive experience and assurance processes), providers (e.g. in quality care provision), professionals and volunteers y (e.g. appropriate infrastructure/support mechanisms to obtain, gather, share and learn from stories and the individual sharing their experience (e.g. being valued, being heard, being supported to celebrate or improve care provision).
Steve Killick & Phil Okwedy This workshop explores some of the ideas developed in our project ‘Feelings are Funny Things’-So far it has been delivered as a 3 day intervention that took place in 6 different schools in Central South Wales.The project aimed to use storytelling as a tool to help children learn about recognising feelings and learning emotion regulation skills. It had a particular focus on trying to engage Children who are Looked After and others who were hard to reach in classroom settings.Our starting premise is that though much of our wellbeing is determined by our emotional response we often do not speak or reflect on the nature of emotions in ordinary conversations. Some children can have very sparse emotional vocabulary. Stories are, of course, an excellent vehicle to explore the inner experiences of thoughts, feelings and actions and the emotional connections of relationships.In teaching children storytelling skills we pay particular attention to conveying and recognising different feelings, how emotions are evoked and how they can best be managed.Our work is very influenced by ideas from the mindfulness psychologies and non-violent communication and we introduce concepts from mindfulness into the work.
Further information can be found at feelingsarefunnythings.org
Ted Clarke Healing Patterns Last winter I was diagnosed with arthritis. For three months mobility was limited to the house. The Welsh double weave blanket on my bed became a focus of fascination for me, the course texture of its wool, the intricacy of its patterns, the conceptual tension set up by the contrary/complimetary effect of its two sidedness. So…. I’ve researched the wool industry, the history, sociology , anthropology and comparative religion of weaving and settled on an idea of blankets having a folk healing and community developing power. To bring this idea into focus I’ve written a collection of poems about the various stages of the blanket weaving process and the myths, folklore and social history that are attached to it. This writing and the interaction with the blanket have enabled me to come to terms with my disability and I am now much more mobile.
Tracy Evans Within feminist scholarship there is a growing body of literature on pregnant and particularly maternal subjectivity. However, there has been very little published about women’s birth stories and their birthing subjectivities from an embodied perspective. Dr Tracy Evans has explored this in a practice as research PhD 2012-2017, using a methodology that combines modes of writing and speaking the body (l’écriture feminine) and deep listening, which attempt to design platforms (performative and written) that enable her to write (and re-write) her birth stories in the feminist tradition of autobiographical performance.
Following on from this research, in Spring 2019 Tracy has worked with Eleanor Shaw, Director of PeopleSpeakUp, to run a pilot series of participatory arts workshops called Birth Café in partnership with Ffwrnes theatre in Llanelli. In this talk they share their initial findings from this pilot project working with women from the local community who have wanted to find new ways of telling their birth stories.
Following Della Pollock (1999), the main aim of this work is to contest dominant medical (and wider cultural) narratives of childbirth. However, this is attempted not by arguing against science-based scholarship, but by arguing for a creative-critical approach that is attentive to the maternal body, in particular to modes of speaking and listening as embodied practices. The process of re-writing dominant narratives in an attempt to construct the/a self has been a very common feminist practice for the last 50 years (Heddon 2007). Autobiographical storytelling, which uses performative writing is a way of generating agency for the author/performer that challenges singularity, authority, essentialism, and the notion of fixed ‘truths’ which support the dominant masculinist paradigm.
Ultimately, this work explores the question of whether (and how) a woman can alter the narrative of pregnancy and childbirth so as to conceive of a new mode of self-determined maternal subjectivity.
Vanessa Yim The Soul Relics Museum collects photographs of objects which relate to a time of personal struggle with mental wellbeing. Objects are markers of our memories. We believe that these stories have the power not only to reshape perspectives on mental health, but also to bring a sense of hope and connectedness to people. We want to recognise that people are more than a diagnosis or a therapeutic objective. At Soul Relics, we acknowledge the value of each person’s personal narrative and the different ways people attribute meaning to their experiences.
The vision of Soul Relics is to be able to contribute to ongoing research about the impact of storytelling and expressing personal narratives on mental wellbeing. Soul Relics promotes a unique method of sharing recovery narratives, which could be valuable for further research on insights into mental health recovery.
I believe the exhibition will foster a deeper and broader understanding of what makes us resilient in the face of life and let the stories from the people with lived experience speak for themselves, which fits the theme of the festival.
Victoria Field For people living with dementia a poem can provide an accessible frame for stories – both by reading and listening and then by writing in response.Having the stories witnessed in a group is affirming and leads to greater confidence, agency and even ‘rementing’, as well as building community.Taking this a step further and creating poem films which can be shared is a way of capturing and honouring these stories for posterity.This session will present A Few Words About Me, a project based in Canterbury initiated by Funder Films CIC which ran for several months.Practitioner Victoria Field will share the techniques and outcomes and there will be a chance to view some of the resulting films. https://vimeo.com/album/5438377
Vincent Dance Theatre whose stories demand to be seen and heard. Art of Attachment was commissioned by Brighton Oasis Project, supported by Wellcome Trust and premiered at Attenborough Centre for Creative Arts, Brighton in October 2018.
Throughout 2018, choreographer/director Charlotte Vincent worked with women from Brighton Oasis Project to explore the complex emotional bonds that exist between women in recovery from substance misuse and their children, partners, family and friends.
In this hard-hitting, uplifting and insightful work, real-life testimonies combine with visual metaphor and movement to reveal the physical, emotional and psychological impact of drug and alcohol use on relationships and a feeling of belonging.
Join Vincent Dance Theatre to see some of the work on film and gain insight into the company’s innovative approach to socially engaged creative practice. VDT’s will discuss the research process, the tension between creative risk and emotional wellbeing and the practical challenges of working with professional and non-professional collaborators.