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

Mandy Brimble, Peter McNee, Mandy Brimble , Peter McNee

• Publisher: Wiley-Blackwell
• Year: 2020
• ISBN:
  9781119653165
• Edition: 2
• Topic: Medicina
• Subtopic: Enfermería pedriática

The second edition of Nursing Care of Children and Young People with Long Term Conditions remains the only nursing-specific text on the care of paediatric patients with chronic illness. Written to meet the needs of nursing students and professionals alike, this comprehensive volume provides authoritative and up-to-date information on the context, theory, and practice of delivering holistic care to children and families in a range of health and social care settings.

Contributions from a team of experienced academics, educators, and practitioners offer valuable insight into the impact of chronic illness on children and parents, the practical implications of meeting their physical, psychological, and social needs, empowering them to be 'experts' in their care, and many more vital aspects of long-term paediatric care. This edition features new and revised content reflecting contemporary guidelines and evidence-based practice, including updated clinical case studies and a new chapter examining the impact of having a sibling with a long-term condition. Emphasising a multi-disciplinary approach to managing chronic illness, this important resource:

• Provides numerous case studies and activities illustrating the application of theoretical principles and current evidence in nursing practice
• Investigates the genetic basis of chronic illness and the differing onsets of long-term conditions
• Discusses current political, economic, and social policies that are influencing healthcare for children and bringing challenges to managers and practitioners
• Examines both classic and contemporary theories of grief, loss, coping, and adaptation Explores ethical, legal, and professional aspects of nursing children and young people with chronic illness
• Addresses evolving nursing roles, the importance of acute emergency care, and the planning and delivery of effective transition from child to adult services

Nursing Care of Children and Young People with Long Term Conditions is required reading for student and registered children's nurses, as well as for practitioners in related health and social care disciplines.

CHAPTER 1
The Definition and Aetiology of Long‐Term Conditions

Siân Bill and Angharad Dwynwen Barklam

Introduction

The intention of this chapter is to help the reader further develop their knowledge and understanding of the genetic basis of children and young people’s long‐term conditions and certain disabilities as a consequence of hereditary influences. Following an overview of chromosomal anomalies, genetic pathways of inheritance will be defined and illustrated via examples of both sex‐linked and autosomal recessive and dominant disorders. This chapter does not intend to provide an in‐depth critique on the current ethical debates, research and practice controversies surrounding genetic engineering and modification. For this the reader is guided to websites such as www.bionews.org.uk.

The latter half of the chapter focuses on examining the differing onsets of long‐term conditions, considering prenatal, neonatal and late onset. To provide the reader with a practice focus, case studies will be used as examples to examine the professional and care implications of nursing children, young people and their families whose long‐term conditions have been diagnosed at various stages of their development. To allow these issues to be further developed and explored, the same case studies will be used in subsequent chapters.

Aim of the chapter

To enhance the genetic knowledge and understanding of nurses, including the aetiology of long‐term conditions in children, and to examine how this genetic competence can be implemented in their practice to:

• Lead to a reduced risk of conditions occurring, or a reduction in severity for those where a condition has been identified.
• Enable them to fully participate in the relevant debates and ethical discussions that can have implications for children, young people and their families.

Intended learning outcomes

• To examine the hereditary influences upon the genetic basis of long‐term conditions in childhood
• To determine patterns of genetic inheritance
• To investigate the origins of long‐term conditions
• To explore the role of the children’s nurse during the period leading to, and at the time of, diagnosis

Genetic knowledge

This chapter is written on the assumption that the reader comprehends the basic foundations and principles of genetics. These being: the biology of chromosomes, the structure and role of deoxyribonucleic acid (DNA) in coding genetic information, its ability to replicate and the mechanisms for protein synthesis. In particular, knowledge of the nitrogenous bases and the mechanisms of transcription and translation are required. A good grasp of the cell cycle and its governing control system, along with knowledge of the distinct stages of mitosis and the two divisions, 1 and 2, of meiosis and their resulting products, is also assumed. It is important that the reader has knowledge and understanding of these basic units relating to normal DNA development and of the processes undertaken for the production of sperm and oocytes. Without this knowledge, the reader may find it difficult to comprehend how DNA mutations can cause disease and how errors within the processes of mitosis and meiosis can result in chromosomal abnormalities.

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Test your knowledge

• What are the two major phases of a somatic cell cycle?
• What are the four stages of mitosis?
• What are the subdivisions of meiosis 1?
• What are the products of meiosis 2?
• What are the three parts of a DNA nucleotide?
• What are the four nitrogenous bases in DNA?
• In what way does RNA differ from DNA?
• Cells contain three different kinds of RNA. What are they and what is their function in carrying out the instructions encoded in DNA?
• Do you understand the following terms? Haploid and diploid germ cell, homologous chromosomes, allele, heterozygosity and homozygosity?

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If the reader wishes to refresh their knowledge on these areas following this test, they are advised to refer to a nursing anatomy and physiology text such as Wong’s Nursing Care of Children (Hockenberry et al., 2019) or Brown (2011) Introduction to Genetics: A Molecular Approach. Additionally, the CPD article by Davies and Meimaridou (...