Little children, love one another. Remember we are not so many selves, but members of a community.
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1 Preface Children and Young People s (CYP) nursing has made great strides over the last twenty years in consolidating its own body of knowledge and developing its own evidence base. Whilst it continues to be an evolving discipline it remains committed to the ideal that children and young people are a distinct group of patients and clients with their own particular needs who are entitled to expertly crafted care. This is a point worth making as the discipline remains threatened by the generalist agenda from a number of angles including the constant drive to change the education and training of nurses, policy drivers, and a changing political landscape. For all these reasons, it is imperative to identify our principles of practice, showcase initiatives within CYP nursing and explore how we are changing the boundaries of practice to meet the ever changing and complex needs of patients and clients whether in hospital or community settings through the promotion of good physical and mental health as well as hands on nursing. We hope this book will promote CYP nursing as a dynamic area of practice which benefits children and young people, their families and the communities in which they live and in so doing so offers a rewarding career to the individual CYP nurse in whatever setting they may practice. Both editors of this book are CYP nurses who have worked in Higher Education for a number of years and have witnessed direct entry at pre-registration level for CYP nurses in the 1990s as well as the move towards all graduate entry which has been achieved in our own country, Wales, and which will be finally rolled out across the United Kingdom over the next few years. This will not only give nursing educational parity with other health professions but bring it in line with the rest of the developed world. We believe that children and young people as well as their families will ultimately benefit from graduate nurses who are educated to be critical thinkers and therefore question and develop practice as well as research it. As our existing knowledge is refined and new knowledge emerges which is added to our theoretical and clinical evidence base so we need to discuss and analyse the implications of using such evidence. There is a need to be critical in the most positive sense and to constantly question and analyse the discipline of CYP nursing. This should be viewed not as a threat to people s integrity or to their knowledge and activity but as an opportunity to push the boundaries and to create and stimulate debate and new ways of working that benefit children and young people. This book sets out to accomplish this task, to stimulate the reader to not only consider the information presented to them but to critically analyse and engage with some of the key principles and debates within CYP nursing. The approach taken within the writing is often deliberately controversial in order to develop new and innovative ways of thinking and of viewing practice, education and research. As a profession and discipline we need to debate our core principles and values in a challenging yet informed discourse. This book contains chapters designed to do this and contributors discuss their own field of expertise by providing reflection points and case studies designed to provoke debate and discussion of the sometimes controversial and awkward issues in CYP nursing. For the sake of brevity and consistency we have used the nomenclature Children and Young People s (CYP) nursing to reflect the age group (0 19 plus) that we care for. The aim of Part 1 of this book is to put children and young people s (CYP) nursing in context and so begins with Jeremy Jolley s chapter which sets out some pertinent historical facts about our development as a distinct area of practice. Appropriately, this emphasises a fundamental principle of practice, that is, the continuing need for us to retain our genuine care for children and young
2 Page xii Preface people and ends on a contentious note by questioning whether it is sensible for CYP nurses to specialise first without obtaining a general qualification. Although, as editors, we do not agree with this position, we do of course respect his right to express it. This is a timely question, given the recent consultation by the (NMC) Nursing and Midwifery Council into pre registration nursing education, and the debate surrounding this is something we return to in the final chapter of this book. In Chapter 2, Sue Higham discusses the concept of Family-Centred Care (FCC) and the importance of fathers when children and young people are sick. She questions the reality of whether fathers are truly regarded as partners in care and suggests that more can be done to address real shortcomings in how they are treated in the care process. She highlights the fact that the term FCC is often equated with the role of the mother acting as the main carer and that this has been perpetuated by research which has focused heavily on the maternal role. Sue Higham argues that the role of the father should assume equal importance within research and clinical practice as children need and value their father s perspectives and care. She calls for a careful consideration of how practice might develop to understand not only the father s experiences and needs whilst caring for a sick child but those of the wider family too siblings and grandparents. Such consideration of the wider family is discussed in Chapter 3 by Vasso Vydelingum and Pat Colliety who consider the issues facing children and young people from ethnic minorities when engaging with the health care system. It is shown that they still face discriminatory practice despite the UK being a multi-cultural society and Vasso Vydelingum and Pat Colliety argue persuasively that care must always be culturally sensitive. This chapter highlights that CYP nurses cannot make assumptions about the needs of children and young people from ethnic minorities, assumptions which may limit the range and scope of care and services provided. Rather, a careful assessment through listening and discussion is vital if inclusion and participation is to be a reality and they are to be given the care and services as well as the respect and dignity they are entitled to. The aim of Part 2 is to identify, using a rights-based approach, why and how the interests of children and young people must be respected and safeguarded. This begins with Chapter 4, by Jill John and Richard Griffiths, which examines the evidence surrounding whether children and young people s right to participate in their own healthcare is actually upheld. Their overview of present practice, and the legal position with regard to this, raises important issues for, as they argue, whilst there is now a benchmark in place for children s rights, there has been a failure by many countries, including the United Kingdom (UK), to incorporate these into domestic law. Whilst the appointment of Children s Commissioners in the UK, as well as other parts of Europe, has done much to raise the profile of children and young people and to monitor, promote and safeguard their rights there is still much that remains to be done if their autonomy is to be truly respected and upheld in actual practice. In this connection, children and young people have the right to be safe and protected from harm and in Chapter 5, Catherine Powell has, based on her work as a Consultant Nurse, Safeguarding Children, clearly set out professional roles and responsibilities in relation to this. Her use of key messages from serious case reviews serves to remind us all too well of the need to learn from these and be forever vigilant. Chapter 6 explores a hitherto under researched issue, namely the use of restraint on children and young people. Sally William s chapter poses some disturbing questions about how we treat some of the most vulnerable children and young people in society and will no doubt be the subject of much heart-searching debate as well as research in the future. The final chapter in this section, by Alison Twycross, highlights the issues involved in managing children and young people s pain. She discusses the challenges in ensuring that their right to have their pain managed effectively in upheld in actual practice. Alison Twycross argues that poor pain management affects all areas of their development
3 Page xiii and recovery and may have profound and lasting effects which can persist into adulthood. She clearly demonstrates that barriers to effective pain management focus on socialisation, beliefs about children s pain, knowledge deficits and role modelling. She posits that best practice guidelines and current research provide a solid foundation base upon which effective, efficient pain management can be delivered. Children and Young People s (CYP) nurses are just as involved in the promotion of physical health and well being as they are in the giving direct hands of care across a range of settings as highlighted throughout this section. Chapter 8, by Carwen Earles and Susan Jones, identifies how the role of the school nurse has evolved over the last 140 years and the vital role they currently play in public health and health promotion. In doing so they draw attention to the fact that despite a number of government recommendations to increase school nursing provision it continues to be under resourced. A regrettable fact given, as they note, that so many children and young people in the UK continue to live in poverty and school nurses can do so much to help them attain good health which not only has a positive effect on their life chances but educational attainment as well. In the following chapter, Ruth Davies, in a similar vein, also draws attention to the fact that Children s Community Nursing (CCN) services across the United Kingdom is also under resourced despite a plethora of government reports over the last fifty years which have recommended that children and young people with acute and complex care needs should be cared for at home rather than in hospital. Her historical overview of the care of sick children makes the point that care outside of the home and the institutionalisation of sick children is a relatively new development and that most children and young people would prefer to be cared for and indeed even die in the family home. Both chapters call upon CYP nurses, practising as school nurses and CCNs, to work at a political level to increase provision by identifying how further expansion of their services will benefit children and young people as well as their families and communities. CYP nursing practice is developing rapidly with care being delivered in diverse settings. Thus children and young people s nurses are faced by a number of challenges on an individual level. Rather than being consumed by the pressures of a rapidly changing health service and meeting targets it is often the immediate practice of delivering individual, personalised care in those diverse settings which focuses the attention and mind of the CYP nurse. Therefore, this section of the book focuses on such challenges the need to consider the whole family as well as the physical, psychological and cultural needs of the children and young people we care for and also on how to engage in best practice in order to deliver the highest quality care. This issue of accessing knowledgeable and appropriate care is reiterated by Julia Terry and Alyson Davies in Chapter 10 in which they highlight the increase in the incidence of mental health issues in children and young people. The rising incidence is multi-factorial and is due in part to enhanced awareness of the mental health issues which affect the younger population. Increased academic and societal pressures, chronic illness, a shifting society and home life also lead to increasing levels of stress and affect the ability to cope. As a result more children, young people and families are being seen within the health care system and they are entitled to be seen and cared for by knowledgeable practitioners. The authors argue that mental health care is no longer the domain of the specialist nurse but is now part of the role of every CYP nurse who provides holistic care. Building on their previous chapter, Alyson Davies and Julia Terry in Chapter 11 draw attention to the increasing incidence of complex mental health problems in children and young people with a
4 Page xiv Preface particular focus on suicide, self harm, anorexia nervosa, ASD (Autistic Spectrum Disorder) and Attention Deficit Hyperactivity Disorder (ADHD). As they rightly point out, all CYP nurses come into contact with or care for these children and young people so it is essential that they have insight and knowledge about these so that they may provide appropriate, sensitive and holistic care. As this chapter highlights CYP nurses also need to work collaboratively with Children and Adolescent Mental Health Services (CAMHS), the multi-disciplinary team as well as voluntary agencies so that the child or young person who is in mental distress is able to receive the high quality care and support they so desperately need. Katrina McNamara-Goodger, in her poignant chapter on the transitional care pathway for children and young people with life-limiting and life-threatening conditions also stresses the need for knowledgeable and appropriate care. She stresses that young people have needs which are very different to those of younger children and adults which must be valued. Care must be holistic and delivered sensitively at a time when the transition from child oriented services to adult based care can be bewildering and complex. She also highlights that all too often transitional care is poorly managed with noticeable gaps in the care packages provided. She reiterates that involvement and participation in the process by the young person and their family leads to their need being understood and met. Care should be co-ordinated, based upon openness with clear communication and continuity of care being hallmarks of the experience of transition. It is a crucial period where nurses must face the challenges involved in providing care which engenders the confidence of the young person and family in the experience of transitional care. It would appear that if children and young people s nursing is to continue developing, those who deliver the care must continue to be innovative, creative and flexible in shaping the delivery of that care. This will mean rigorously exploring our current practice and critically analysing how those boundaries can be challenged to ensure that children and young people remain at the heart of health care planning and the delivery of services which must always meet their needs and be centred on the individual child, young person and their family. This theme will be expanded upon in section four of this book. Throughout this book it has been our intention to promote CYP nursing as a stimulating and rewarding career for high achievers by identifying the many roles performed by them in different spheres including school nursing, hospital nursing, community children s nursing and, as will be shown in our penultimate chapter, advanced nursing practice. In doing so, we have shown how the Skills for Health Framework (Chapter 9) is linked to educational attainment so the novice CYP nurse may plan his/her career and continue to progress. In this connection, whatever their level of practice the CYP nurse is well advised to develop a professional portfolio for, as Chapter 13 by Alyson Davies and Gary Rolfe shows, these are increasingly being used by practitioners for professional and personal development. This chapter shows how a portfolio may give the CYP nurse the freedom to explore his or her own knowledge base and knowledge acquisition as well as the application of these to practice. Portfolios may also be used by the individual CYP nurse in career progression planning and to identify the specific knowledge, competencies and skills required to deliver high quality care to children and young people and their families. Indeed, as the authors claim, this may be used effectively to help them articulate their own particular contribution to care as a CYP nurse. This particular observation would seem appropriate in the context of this book for, if CYP nursing is to survive and indeed flourish as a distinct branch of the family of nursing we must make plain and manifest the high quality and expertly crafted care we can and do provide for children and young people in whatever setting they may be cared for.
5 Page xv The final chapter by Dave Barton, Alyson Davies and Ruth Davies is perhaps the most contentious one within this book debating as it does Advanced Nursing Practice (ANP). After tracing the history of ANP and putting their present scope of practice and educational attainment into context they pose the question Who are the ANPs and who are treating children and young people? and ask whether these should be generalist or CYP nurses. Both sides of the debate are presented and the reader is invited to engage in this through a series of reflection points. We leave the reader to decide! We hope that a new generation of student CYPs, whether undertaking study at pre- or post-registration level or studying at diploma or graduate level, will find this a stimulating and thought provoking book. In putting our final touches to this in November 2010 we are mindful of the significance of this year in relation to our most famous nurse Florence Nightingale ( ), and so we end with her words spoken to her nurses all those years ago but which are still applicable to us in a new century and a very different world as we continue to care for children and young people: Little children, love one another. Remember we are not so many selves, but members of a community. March 2011 Ruth Davies and Alyson Davies, Department of Nursing, Swansea University Florence Nightingale
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