Nursing Care of Children and Young People with Long-Term Conditions

ISBN-13: 9781119653110 / Angielski / Miękka / 2021 / 304 str.

Mandy Brimble; Peter McNee

Spis treści

Contributors xiiiIntroduction xvii1 The Definition and Aetiology of Long-Term Conditions 1Siân Bill and Angharad Dwynwen BarklamIntroduction 1Aim of the chapter 1Intended learning outcomes 2Genetic knowledge 2The need for genetic knowledge 3The ethical, legal and social implications in the screening, testing and recording of genetic information 4The determinants of genetic disease 5Chromosomal abnormalities 6Chromosomal nomenclature 8Single gene (Mendelian) disorders 8Autosomal recessive inheritance 9Autosomal dominant inheritance 11X-linked recessive inheritance 11X-linked dominant inheritance 12Inherited variations 12Antenatal period 15The neonatal period 17Post-neonatal period 19Adolescent period 22Conclusion 23Useful websites 24References 252 Context of Care and Service Delivery 31Peter McNeeIntroduction 31Aim of the chapter 31Intended learning outcomes 31Context of change 32Political influences 32Economic influences 33Social influences 34New models of service delivery 35Modernising workforce 36Increasing patient expectations and engagement 38Locally based commissioning 39Staffing implications 40Staff education and competence 40Meeting parental needs 42Innovative practices - new roles 44Telemedicine 45Key worker role 45Mental health issues 47Multiagency working 47Multidisciplinary team (MDT)/Interprofessional working (IPW) 48Nursing implications, challenges and opportunities in MDT/IPW working 49Conclusion 49Acknowledgement 50Useful websites 50References 503 Impact upon the Child and Parents 55Dawn Daniel and Mandy BrimbleIntroduction 55Aim of the chapter 55Intended learning outcomes 56Theories of grief, loss and change 56Initial impact 60Type 1 diabetes 60Impact on parents 61Impact on the child/young person with a long-term illness 62Continuing care 65Coping, adaptation and change 66Theories of stress and coping 67Coping strategies 68Normalisation 69Conclusion 74Acknowledgement 75Useful websites 75References 754 Impact On Siblings 81Amie Hodges, Daniel Kelly, and Julia TodIntroduction 81Aim of the chapter 81Intended learning outcomes 82The sibling relationship 82Sibling identity 83Sibling boundaries 83Sibling interaction 84Parental influence on the sibling relationship 85The impact of a long-term condition on the sibling 86A new diagnosis 86Changes in family life for the sibling 87Emotional labour 88Sibling empathy and maturity 88Siblings as carers 89Young carers and carers' assessment 90Recognising the unmet needs of siblings 91Conclusion 93Useful websites 93References 945 A Holistic Approach to Meeting Physical, Social and Psychological Needs 97Amie Hodges and Julia TodIntroduction 97Aim of the chapter 97Intended learning outcomes 98Prevalence of eczema 98Nursing considerations 99Presentation of eczema 100Treatment of eczema with emollients 101Topical emollients 101Safety 102Effects of the itch scratch cycle 102Family stress and coping 103Assessment and immediate intervention 105Current care management plan 106Wet wraps 106Topical steroids 107Pain assessment 107Antihistamines 109Play and distraction 109Bullying 110Spirituality 112Traditional complementary and alternative medicine 114Health promotion 115Conclusion 116Useful websites 116Recommended reading 117References 1176 Empowering Children, Young People and their Families 121Mandy BrimbleIntroduction 121Aim of the chapter 121Intended learning outcomes 122Health promotion 122Empowerment 125Approaches to health promotion 126Parental smoking 129Obesity 131Non-compliance 135Steroids 135Restrictive physical interventions and therapeutic holding 136Conclusion 139Useful websites 140References 1407 Ethical Issues 145Peter McNeeIntroduction 145Aim of the chapter 145Intended learning outcomes 146Why study ethics? 146A definition of ethics 146Introduction to ethical theories 147Theory of consequentialism 147Utilitarianism 148Act utilitarianism 148Rule utilitarianism 148Theory of deontology 151Ethical principles 154Principle of autonomy 155Ethical principle of beneficence 157Issues 158Ethical principle of non-maleficence 159Ethical principle of justice 161A nursing ethic 162Definition of an ethical dilemma 163Ethical decision-making 164A suggested model for ethics in practice/decision-making 166Conclusion 167Acknowledgement 167Useful websites 168Recommended reading 168References 1688 Children and Young People's Continuing Care 171Melda Price and Sian ThomasIntroduction 171Aim of the chapter 172Intended learning outcomes 172Continuing care needs and integrated children services 172Transition to home care 177Blended diets 179Children and young people's continuing care 180Identifying an appropriate care package 181Key worker role/care coordinator 182Community children's nursing services 182Provision of equipment for home care 184Carers' assessments 185The need for respite or short break provision 186Home adaptations 188Education and support at school 188Support for families 189Conclusion 189Useful websites 190References 1909 Acute Emergencies 193Martina Nathan, Peter McNee, and Jane DaviesIntroduction 193Aim of the chapter 193Intended learning outcomes 193Acute emergencies 194Aetiology 196Environmental factors 196Pathophysiology 197Presentation 197Prognosis 198Treatment 200Administration of chemotherapy 201Central venous access devices 202Sepsis 205Children's critical care 206Family-focused care 207Multidisciplinary working across different organisations 208Conclusion 209Useful websites 210References 21010 Adolescence 213Siân Bill and Taryn EcclestonIntroduction 213Aim of the chapter 213Intended learning outcomes 214Existing knowledge 214Why nurses need knowledge of adolescence 214Brief overview of adolescent development 215Understanding long-term conditions from a young person's perspective 216Chronic kidney disease 217Communicating with young people 220Communication issues for Thomas 221Peer groups 221The impact of having a long-term condition on growth and development 224Delayed growth and puberty 224Inconsistencies between physical and psychological development 225Body image and self-esteem 225Compliance and non-compliance, concordance and co-production 227The social aspects of having a long-term condition 228Young people, long-term conditions and school 229Bullying 230The hospitalised adolescent 231Issues for young people in hospital 232Specialised adolescent units 234Service delivery and adolescent health 235Promoting excellence 236The role of the nurse 236Conclusion 237Acknowledgement 237Useful websites 238Recommended reading 238References 23811 Transitional Care 243Siân Bill and Amie HodgesIntroduction 243Aim of the chapter 243Intended learning outcomes 243Overview of cystic fibrosis 244Further complications 246Genotype 246Management 247Adolescents with a long-term condition 247Transitional care 248The philosophy of transitional care 248Models of transition 248Issues regarding transition for adolescents 250Gaining autonomy 252Managing a long-term condition 252Support and decision-making 252The role of the nurse 254Promoting the paradigm shift 257The principles of successful transitional care 258Conclusion 262Useful websites 262Recommended reading 262References 263Index 267

O autorze

MANDY BRIMBLE, Senior Lecturer, Children and Young People's Nursing, School of Healthcare Sciences, Cardiff University, Cardiff, UK. She has worked as a Children's Nurse in general medicine and day surgery, and as the research and education lead in a children's hospice.PETER MCNEE, Senior Lecturer, Children and Young People's Nursing, School of Healthcare Sciences, Cardiff University, Cardiff, UK. His main areas of teaching include the acquisition of clinical skills, paediatric critical care, and acute clinical care.