Nursing Care of Children and Young People with Long-Term Conditions PDF
Preview Nursing Care of Children and Young People with Long-Term Conditions
Nursing Care of Children and Young People with Long- Term Conditions Second Edition This book is dedicated to all children and young people with long-term conditions and their families Nursing Care of Children and Young People with Long- Term Conditions Second Edition Edited by MANDY BRIMBLE RN, Dip. HE (Child), B.Sc. (Hons) Community Health Studies (Public Health Nursing/ Health Visiting), Registered Nurse Prescriber, PGCE, M.Sc. Education Senior Lecturer, Children and Young People’s Nursing School of Healthcare Sciences, Cardiff University, Cardiff, UK PETER McNEE RGN, RSCN, ENB (415), BA (Hons), PGCE, M.Sc. Senior Lecturer, Children and Young People’s Nursing School of Healthcare Sciences, Cardiff University, Cardiff, UK This edition first published 2021 © 2021 John Wiley & Sons Ltd Edition History Blackwell Publishing Limited (1e, 2007) All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by law. Advice on how to obtain permission to reuse material from this title is available at http://www.wiley.com/go/permissions. The right of Mandy Brimble and Peter McNee to be identified as the author(s) of the editorial material in this work has been asserted in accordance with law. Registered Office(s) John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, USA John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK Editorial Office 9600 Garsington Road, Oxford, OX4 2DQ, UK For details of our global editorial offices, customer services, and more information about Wiley products visit us at www.wiley.com. Wiley also publishes its books in a variety of electronic formats and by print-on-demand. Some content that appears in standard print versions of this book may not be available in other formats. Limit of Liability/Disclaimer of Warranty The contents of this work are intended to further general scientific research, understanding, and discussion only and are not intended and should not be relied upon as recommending or promoting scientific method, diagnosis, or treatment by physicians for any particular patient. In view of ongoing research, equipment modifications, changes in governmental regulations, and the constant flow of information relating to the use of medicines, equipment, and devices, the reader is urged to review and evaluate the information provided in the package insert or instructions for each medicine, equip- ment, or device for, among other things, any changes in the instructions or indication of usage and for added warnings and precautions. While the publisher and authors have used their best efforts in preparing this work, they make no representations or warranties with respect to the accuracy or completeness of the contents of this work and specifically disclaim all warranties, including without limitation any implied warranties of merchantability or fitness for a particu- lar purpose. No warranty may be created or extended by sales representatives, written sales materials or promotional statements for this work. The fact that an organization, website, or product is referred to in this work as a citation and/ or potential source of further information does not mean that the publisher and authors endorse the information or services the organization, website, or product may provide or recommendations it may make. This work is sold with the understanding that the publisher is not engaged in rendering professional services. The advice and strategies contained herein may not be suitable for your situation. You should consult with a specialist where appropriate. Further, readers should be aware that websites listed in this work may have changed or disappeared between when this work was written and when it is read. Neither the publisher nor authors shall be liable for any loss of profit or any other commercial dam- ages, including but not limited to special, incidental, consequential, or other damages. Library of Congress Cataloging-in-Publication Data Names: Brimble, Mandy, editor. | McNee, Peter, editor. Title: Nursing care of children and young people with long term conditions / edited by Mandy Brimble, Peter McNee. Other titles: Nursing care of children and young people with chronic illness Description: Second edition. | Hoboken, NJ : Wiley-Blackwell, 2021. | Preceded by Nursing care of children and young people with chronic illness / edited by Fay Valentine, Lesley Lowes. 2007. | Includes bibliographical references and index. | Description based on print version record and CIP data provided by publisher; resource not viewed. Identifiers: LCCN 2020024334 (print) | LCCN 2020024335 (ebook) | ISBN 9781119653165 (epub) | ISBN 9781119653158 (Adobe PDF) | ISBN 9781119653110 (paperback) | ISBN 9781119653110q(paperback) | ISBN 9781119653158q(Adobe PDF) | ISBN 9781119653165q(epub) Subjects: | MESH: Chronic Disease–nursing | Long-Term Care–methods | Holistic Nursing | Patient Participation | Child | Adolescent Classification: LCC RJ380 (ebook) | LCC RJ380 (print) | NLM WY 152.2 | DDC 618.92/044–dc23 LC record available at https://lccn.loc.gov/2020024334 LC record available at https://lccn.loc.gov/2020024335 Cover Design: Wiley Cover Image: View Directly Below of Seven © Digital Vision/Getty Images, Group of children © momentimages/ Getty Images, Portrait of smiling school kids © Inside Creative House/Shutterstock Set in 10/12pt STIXTwoText by SPi Global, Pondicherry, India 10 9 8 7 6 5 4 3 2 1 Contents CONTRIBUTORS xiii INTRODUCTION xvii 1 The Definition and Aetiology of Long-Term Conditions 1 Siân Bill and Angharad Dwynwen Barklam Introduction 1 Aim of the chapter 1 Intended learning outcomes 2 Genetic knowledge 2 The need for genetic knowledge 3 The ethical, legal and social implications in the screening, testing and recording of genetic information 4 The determinants of genetic disease 5 Chromosomal abnormalities 6 Chromosomal nomenclature 8 Single gene (Mendelian) disorders 8 Autosomal recessive inheritance 9 Autosomal dominant inheritance 11 X-linked recessive inheritance 11 X-linked dominant inheritance 12 Inherited variations 12 Antenatal period 15 The neonatal period 17 Post-neonatal period 19 Adolescent period 22 Conclusion 23 Useful websites 24 References 25 2 Context of Care and Service Delivery 31 Peter McNee Introduction 31 Aim of the chapter 31 Intended learning outcomes 31 Context of change 32 Political influences 32 Economic influences 33 Social influences 34 New models of service delivery 35 Modernising workforce 36 v vi CoNTENTS Increasing patient expectations and engagement 38 Locally based commissioning 39 Staffing implications 40 Staff education and competence 40 Meeting parental needs 42 Innovative practices – new roles 44 Telemedicine 45 Key worker role 45 Mental health issues 47 Multiagency working 47 Multidisciplinary team (MDT)/Interprofessional working (IPW) 48 Nursing implications, challenges and opportunities in MDT/IPW working 49 Conclusion 49 Acknowledgement 50 Useful websites 50 References 50 3 Impact upon the Child and Parents 55 Dawn Daniel and Mandy Brimble Introduction 55 Aim of the chapter 55 Intended learning outcomes 56 Theories of grief, loss and change 56 Initial impact 60 Type 1 diabetes 60 Impact on parents 61 Impact on the child/young person with a long-term illness 62 Continuing care 65 Coping, adaptation and change 66 Theories of stress and coping 67 Coping strategies 68 Normalisation 69 Conclusion 74 Acknowledgement 75 Useful websites 75 References 75 4 Impact On Siblings 81 Amie Hodges, Daniel Kelly, and Julia Tod Introduction 81 Aim of the chapter 81 Intended learning outcomes 82 The sibling relationship 82 Sibling identity 83 Sibling boundaries 83 Sibling interaction 84 CoNTENTS vii Parental influence on the sibling relationship 85 The impact of a long-term condition on the sibling 86 A new diagnosis 86 Changes in family life for the sibling 87 Emotional labour 88 Sibling empathy and maturity 88 Siblings as carers 89 Young carers and carers’ assessment 90 Recognising the unmet needs of siblings 91 Conclusion 93 Useful websites 93 References 94 5 A Holistic Approach to Meeting Physical, Social and Psychological Needs 97 Amie Hodges and Julia Tod Introduction 97 Aim of the chapter 97 Intended learning outcomes 98 Prevalence of eczema 98 Nursing considerations 99 Presentation of eczema 100 Treatment of eczema with emollients 101 Topical emollients 101 Safety 102 Effects of the itch scratch cycle 102 Family stress and coping 103 Assessment and immediate intervention 105 Current care management plan 106 Wet wraps 106 Topical steroids 107 Pain assessment 107 Antihistamines 109 Play and distraction 109 Bullying 110 Spirituality 112 Traditional complementary and alternative medicine 114 Health promotion 115 Conclusion 116 Useful websites 116 Recommended reading 117 References 117 6 Empowering Children, Young People and their Families 121 Mandy Brimble Introduction 121 viii CoNTENTS Aim of the chapter 121 Intended learning outcomes 122 Health promotion 122 Empowerment 125 Approaches to health promotion 126 Parental smoking 129 obesity 131 Non‐compliance 135 Steroids 135 Restrictive physical interventions and therapeutic holding 136 Conclusion 139 Useful websites 140 References 140 7 Ethical Issues 145 Peter McNee Introduction 145 Aim of the chapter 145 Intended learning outcomes 146 Why study ethics? 146 A definition of ethics 146 Introduction to ethical theories 147 Theory of consequentialism 147 Utilitarianism 148 Act utilitarianism 148 Rule utilitarianism 148 Theory of deontology 151 Ethical principles 154 Principle of autonomy 155 Ethical principle of beneficence 157 Issues 158 Ethical principle of non‐maleficence 159 Ethical principle of justice 161 A nursing ethic 162 Definition of an ethical dilemma 163 Ethical decision-making 164 A suggested model for ethics in practice/decision-making 166 Conclusion 167 Acknowledgement 167 Useful websites 168 Recommended reading 168 References 168 8 Children and Young People’s Continuing Care 171 Melda Price and Sian Thomas Introduction 171 CoNTENTS ix Aim of the chapter 172 Intended learning outcomes 172 Continuing care needs and integrated children services 172 Transition to home care 177 Blended diets 179 Children and young people’s continuing care 180 Identifying an appropriate care package 181 Key worker role/care coordinator 182 Community children’s nursing services 182 Provision of equipment for home care 184 Carers’ assessments 185 The need for respite or short break provision 186 Home adaptations 188 Education and support at school 188 Support for families 189 Conclusion 189 Useful websites 190 References 190 9 Acute Emergencies 193 Martina Nathan, Peter McNee, and Jane Davies Introduction 193 Aim of the chapter 193 Intended learning outcomes 193 Acute emergencies 194 Aetiology 196 Environmental factors 196 Pathophysiology 197 Presentation 197 Prognosis 198 Treatment 200 Administration of chemotherapy 201 Central venous access devices 202 Sepsis 205 Children’s critical care 206 Family-focused care 207 Multidisciplinary working across different organisations 208 Conclusion 209 Useful websites 210 References 210 10 Adolescence 213 Siân Bill and Taryn Eccleston Introduction 213 Aim of the chapter 213 Intended learning outcomes 214 x CoNTENTS Existing knowledge 214 Why nurses need knowledge of adolescence 214 Brief overview of adolescent development 215 Understanding long-term conditions from a young person’s perspective 216 Chronic kidney disease 217 Communicating with young people 220 Communication issues for Thomas 221 Peer groups 221 The impact of having a long-term condition on growth and development 224 Delayed growth and puberty 224 Inconsistencies between physical and psychological development 225 Body image and self-esteem 225 Compliance and non-compliance, concordance and co-production 227 The social aspects of having a long-term condition 228 Young people, long-term conditions and school 229 Bullying 230 The hospitalised adolescent 231 Issues for young people in hospital 232 Specialised adolescent units 234 Service delivery and adolescent health 235 Promoting excellence 236 The role of the nurse 236 Conclusion 237 Acknowledgement 237 Useful websites 238 Recommended reading 238 References 238 11 Transitional Care 243 Siân Bill and Amie Hodges Introduction 243 Aim of the chapter 243 Intended learning outcomes 243 overview of cystic fibrosis 244 Further complications 246 Genotype 246 Management 247 Adolescents with a long-term condition 247 Transitional care 248 The philosophy of transitional care 248 Models of transition 248 Issues regarding transition for adolescents 250 Gaining autonomy 252 Managing a long-term condition 252
The list of books you might like
