Stories of Children’s Pain: Linking Evidence to Practice

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Bernie Carter & Joan Simons

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    Acknowledgements

    SAGE has been part of the global academic community since 1965, supporting high quality research and learning that transforms society and our understanding of individuals, groups and cultures. SAGE is the independent, innovative, natural home for authors, editors and societies who share our commitment and passion for the social sciences.

    Find out more at: http://www.sagepublications.com

    List of Figures and Tables

    About the Authors

    Bernie Carter is Professor of Children’s Nursing at the University of Central Lancashire and Alder Hey Children’s NHS Foundation Trust in the United Kingdom. She is a Clinical Professor at the University of Tasmania and Editor-in-Chief for the Journal of Child Health Care. She was made a Fellow of the Royal College of Nursing in recognition of her contributions to the field of children’s pain. Bernie’s research and writing focuses on children’s pain experiences and the assessment of children’s pain. She is particularly interested in improving the lives of children with complex health care needs and life limiting/threatening illness. Bernie’s research work draws particularly on narrative and appreciative inquiry and on arts-based methods as a means of engaging with children and eliciting stories of their experiences, hopes, beliefs and concerns. Bernie believes that stories are at the heart of the connections we make with children, families and their experiences of pain.

    Joan Simons is Assistant Head of Department in the faculty of Health and Social Care at The Open University. She has worked in the field of children’s pain for over 20 years and has observed significant developments which have come about through the passion and dedication of practitioners. However, as the content of this demonstrates, there is still some way to go to consistently deliver effective pain management to children and their families.

    Acknowledgements

    When we set out to write this book we knew that the success of our endeavour would hinge on the support of many people. We requested stories from across the world, and were humbled by the time and effort put in by all those who wrote down their stories and shared their experiences. We have not been able to use every story we were sent and we had to make some difficult choices about which ones we included in the book.

    The stories we received have come from Australia, Bahrain, Ireland, Kenya, New Zealand, South Africa, Sweden, the United Kingdom and the United States of America. There are stories from each of these countries in the book.

    We would like to say a very big thank you to the people who provided stories but wished to remain anonymous and to the following people who gave permission for us to acknowledge their contributions:

    Dave Barton, Nikki Brown, Ruth and Adrian Davies, Annette Dickinson, Maria Forsner, Jayne Francis Sharma, Karen Harrison Janet Mattsson, Julie Mullett, James Mwaura, Stefan and Katerina Nilsson, Judy Rollins, Carole Shaw, Sharon Skowronski, Anne Smith, Sekayi Tangayi and Amanda Williamson.

    We are especially thankful to the children and young people who contributed their stories and drawings. Some of you chose to remain anonymous and some of you were happy for your names to appear in the book. We wish that you did not have stories of pain to tell us. We hope that you have a pain-free future or if this is not possible that your pain is always managed well by health care professionals. Thank you to:

    Justice Addo, Hattie, Sandra Jonsson, Kamau, Tanya Tia Kerr, Samantha Llannwarne, Luci McDougall, Fauzana Nakaigozi, Nabila Nakigou, Nazra Sesay, ‘Noah’, Shantell.

    Bernie Carter: To my sisters, Bridget and Claire, for all the stories we have shared and we will share together. To Art Frank ‘narrative guru’ and friend. And, as always and forever, for Jon.

    Joan Simons: To my father, Paddy Keely, a renowned storyteller; to Clodagh and Sorcha whose stories are still unfolding; and to Tom for his unwavering belief and support no matter what the story.

    Publisher’s Acknowledgements

    All of the stories in this book are reproduced with permission, and with ethics approval. Ethics approval was granted by The University of Central Lancashire.

    Introduction In the beginning...

    Stories are fundamentally about life and the lives we lead, the experiences we have and our determination to share, connect and make sense of the things that happen to us and other people. Pain stories are ways of reaching out, asking for help, explaining actions and inactions and positioning pain within the world. In health care settings which are often dominated by measurable organisational storylines of efficiency, throughput, outcomes, and performance indicators, stories are often overlooked. Yet it is through attending to stories that we have a chance to start to understand what is important to the children, young people and families for whom we care. If we ignore their stories, we are ignoring who they are as well as what we can do for and with them.

    Pain stories are important stories to attend to because they have the capacity to shape our thinking and our professional practice. Stories create connections between people and experiences. When we hear a child’s or a parent’s pain story, it connects us to the other children and parents we have heard tell stories about their pain. When we hear a professional’s pain story we connect to it through our own experiences of caring for children and families in similar situations. Pain stories make us think. They are affective, not just shaping and changing our thinking but also creating emotional ties and new empathic understanding of how we can better engage with and manage people’s pain.

    The stories in this book represent just the tiniest fraction of the pain stories that are told. If, as a practitioner, you take time to stop and listen you will find yourself surrounded by stories that resonate with the ones that children, parents and professionals shared with us. Inherent in all of the stories we share are ‘moral moments’ – moments that demand of us a response and where that response ‘declares our moral self’. We defy anyone to read the stories we share without experiencing moral moments. In fact, if all that readers did was to read the stories and gain a stronger sense of how they wish to be present in the lives of children and their families, then this book will have achieved a great deal.

    Throughout the creation of the book, we have lived with the stories. They have accompanied us, guided us, and challenged us. They have wrapped themselves around our thinking and our emotions. We felt and still feel that the stories were entrusted to us. We actively sought stories from children, parents and professionals as these are the people most caught up in pain stories. Rather than focusing just on stories from our own back yard, we sought stories from further afield. Although the geography and context are different, the stories resonate regardless of the setting. Pain is a human experience and pain stories tell us of that experience. When we first thought of the book we asked ourselves two key questions: first, ‘should we do it?’ and second, ‘could we do it’? Each was important – the ‘should we?’ question required us to think through the ethics of collecting pain stories and then publishing them. A considerable amount of paperwork resulted in us gaining ethics clearance to send out a request for stories. In thinking through ‘should we?’ we knew that once we publicly shared the stories, they would have a public life of their own. Although this is what we wanted, we were aware that they would be out of our control. We would not be able to predict or define how other people connected with the stories, what they would do with them. However, the nature of stories is that they are never really under our control. All of the stories in this book represent stories that the storytellers wanted to share: they knew that by telling us their stories for a book, they would be setting these free to roam and change people’s hearts and minds. When we have been given permission to use the storyteller’s name we have done so, where pseudonyms were supplied we have used these. Where names were withheld, we have taken the liberty of choosing names for the children as we felt that a story had more life when the person in it was named. We have done almost no editing of the stories; instead we have – for the most part – let them stand as they were told. Tiny changes to punctuation or micro-editing have been done to assist the narrative flow or to remove identifiers such as names or settings where the storyteller requested this.

    The stories came to us by email, post and face-to-face. Some stories were handwritten, others were word processed. Some – we were told – were written in a passionate outpouring, others were crafted over time. Some stories were written specifically for the purpose of the book, others were built from diary extracts. Some built over time with episodes of the story being shared with us gradually. Each story in its own way disrupted and distracted our thinking as we read it. Amongst much of the mundanity of everyday emails and post, these stories demanded attention and many shook us to our core. When you read these, give yourself time to absorb them and prepare to be affected.

    The second question we asked was ‘could we do it?’ and we didn’t really know the answer to that until very near to the point we were due to submit the manuscript to Sage. For much of the time we were not sure we could do it. Both of us have said that putting together the chapters for this book has been the hardest thing we have ever written. Both of us have experienced the sense of trepidation of starting with a child’s, parent’s or professional’s story and trying to both honour and respect and interpret it but also to use it (and we use the word use deliberately here) as a starting point for a chapter. Both of us have felt somewhat trapped by the stories at times – this is perhaps a natural consequence of spending so much time with them. In many ways our experience of being haunted by some of the stories reflects the experiences of the children, parents and professionals. They told stories that deeply affected them, so it is hardly surprising that they affected us as we strove to write with and about them and link them to evidence, theory, science and practice. In many cases we have shared the chapters with the storytellers, partly perhaps reflecting a nervousness on our part that we had done justice to the stories, got things right. In each case, the storytellers have come back to us with more stories and reflections: stories do beget stories. We have also shared the chapters with professionals and experts, in this case perhaps reflecting a nervousness about whether or not we have got the ‘facts right’, and again we have been overwhelmed not just by the confirmation that things are correct but also by stories of their own. As we have been trying to tie the book down, we have been collecting new stories, new ideas and some new beginnings.

    We chose a story-based approach because we know stories are powerful in being able to shape thinking and feeling. There is a wealth of excellent research evidence and literature that guides what we should be doing but it does not always change practice. We hope that in a small way, this book will help shape the way that professionals approach the care of children and young people who are in pain. The stories in this book should act as guides – not guidelines – to practice; we hope these will affect and effect pain practice. We also hope that the stories that the children, young people and professionals have shared with us will become stories that you share with other people and that you start to tell and learn from your own stories. Amongst many of the eloquent things that Frank (2010: 60) says about letting stories breathe, is that ‘stories will not leave people alone’. This is how it should be with stories of pain: we should not simply hear a pain story, shrug our shoulders and say ‘nothing to do with me’. Children’s pain and their stories about their pain are intimately and absolutely to do with each of us. As we have come to know the children in the stories, we have tried to care for the stories as we would hope we would care for them in real life. In some ways, we have nursed these children and their parents and we have come to know the professionals as colleagues.

    This book is about the stories that people tell about children’s pain and how these touch and affect the lives of the children, their parents and the professionals involved in them. The notion of learning through stories is not new. To a greater or lesser extent all of our lives have been shaped by the stories we have been told or read. The stories we read or that we were read as children often have a strong sense of explaining the rules of the society in which we are growing up – “do this … ” or “don’t do this because … ”. Fables, folk tales, and many other story forms often give guidance about or insights into living a good life.

    Before turning to the stories of real experiences and trying to shed light on children’s pain, we turn to a children’s story called ‘Crow and Weasel’ (Lopez 1993). It is a mythical story about a journey taken by Crow and Weasel as they learn about themselves, respect for other people and their traditions, and their obligations to other people. It is a story about ‘how things should be’ and how to live a life worth living. They learn from the animals, like Mouse and Grizzly Bear and the Inuit people they meet. Towards the end of their journey, Crow and Weasel meet Badger. The lesson that Badger teaches is about the importance of caring for stories and her words are as apposite to us as professionals caring for children in pain as they were to Crow and Weasel:

    ‘I would ask you to remember only this one thing,’ said Badger. ‘The stories people tell have a way of taking care of them. If stories come to you, care for them. And learn to give them away where they are needed. Sometimes a person needs a story more than food to stay alive. That is why we put these stories in each other’s memory. This is how people care for themselves. One day you will be good story-tellers. Never forget these obligations.’ (Lopez 1992)

    Badger says that the stories people tell ‘have a way of taking care of them’. You can see this in the stories we share in the rest of the book. We want you to care for the pain stories that come to you – to attend to the stories in this book and to the stories that you are told in practice. Listen to them, think with the stories and understand why these are being told. Grow with the stories – use them as food to sustain and enhance your practice. The people who have told their stories have ‘given them away’. The people who shared these stories with us ‘put these stories’ into our memories. In turn, we want these stories to become both part of your memory and part of your future. Practise with these and your own stories in your mind and in your heart. If you do this then you will be shaping a more connected, child-centred and human approach to managing children’s pain. Badger warns that we should ‘never forget [our] obligations’; pain stories illuminate the path to help shape better pain stories for children and their families.

    References
    Frank, A. W. (2010) Letting Stories Breathe: A Socio-narratology. Chicago, IL: University of Chicago Press.
    Lopez, B. (1992) Crow and Weasel. New York: Harper Perennial.
    10.4135/9781446288245.n1

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