Severe Combined Immune Deficiency: Early Hospitalisation and Isolation [Paperback]

This book explores the stressful factors that are linked to early, long-term hospitalisation and isolation and their potential effects upon the children and their families. The importance of the family is explored within the context of a child with chronic or acute ill health requiring hospitalisation, and in particular will look at the concept of family-centred care of children in hospital.
Although the focus of the book appears to be centred upon children with severe combined immunodeficiency (SCID), this is only a hook upon which the experiences involved in early hospitalisation are discussed, and in actual fact it looks at the effects on children with many other more common disorders, such as chronic illnesses (e.g. diabetes), infections, cancers, and acute episodes of ill health - including children and neonates requiring intensive care. In effect, all children who enter hospital for treatment are to some extend isolated from their previous existence, and this book explores and discusses the effects of early hospitalisation on the psychosocial development and behaviour of these children, and the effects that early hospitalisation of children can have on parents and other members of the family..
The book also looks at children's perceptions of health and of death. Whilst the children with SCID underwent their most acute ill health and treatment at an age when they are neither consciously nor cognitively aware of what they are going through, children with other disorders, where the onset of the illness and the treatment occur at a later age, certainly have perceptions of a health and of their own mortality.
Early hospitalisation brings with it many stresses that are experienced by children with chronic and acute ill-health, and their families, and this book discusses how they can find the resources to cope with the stressors.
Early hospitalisation as a result of acute or chronic ill health can lead to anger and aggression in children, as well as depressive and neurotic behaviours, and feelings of alienation. This book explores these phenomena using the words and pictures of the children and their parents. Another potential problem arising from these experiences of early hospitalisation, particularly as a result of acute ill health, is that of post-traumatic stress disorder (PTSD) which is also discussed in this book. Certainly, the situations experienced in hospital by many children and their families have resonances with people known to be suffering from PTSD.
The book concludes by summarising the major themes that have arisen during the course of this book, and looks at the quality of life that many of these children, and their families, may attain.
The book is intended not only for those whose professional role it is to look after children in hospital, but is also intended for families of children who are, or have been, in hospital in order to understand their child's behaviour - often many years after the event. It may even be useful for the children themselves when they are old enough to understand. It is hoped that an appreciation of the effects of early hospitalisation and isolation on children and families will lead to the adoption of ways to counteract these effects in some way, either at a professional or personal level.

Peter Vickers undertook teacher training at St Luke's Teacher Training College, Exeter from 1963-1966. Initially specialising in the education of children with special needs, he then specialised in the teaching of arts and crafts. Following four years with the army in Germany, in 1980 he commenced nurse training at the York School of Nursing. This was followed in1984 by his undertaking further studies at the Charles West School of Nursing, Great Ormond Street, London, following which he specialised in immunology and infectious diseases. Following his work as the Immunology Clinical Nurse Specialist in Paediatrics at the Hospital for Sick Children, Great Ormond Street, London, he became the Clinical Nurse Manager for Paediatrics at Newcastle General Hospital in 1990. During this time, he also commenced his PhD studies - based in Newcastle and Ulm (Germany) - before entering nurse education in 1992. After leaving nurse education in 1996 in order to concentrate on his PhD studies, he again worked in the clinical area, this time in the Paediatric Unit at the Luton & Dunstable Hospital, before commencing as a senior lecturer at the University of Hertfordshire. He was awarded his doctorate in 1999 for his research into children who had survived bone marrow transplants for immune deficiency disorders, and their families, in the UK and Germany. As a senior lecturer, he taught the biosciences (particularly Immunology), children's health, and research, as well as undertaking his own research projects. He also set up a Master's degree in Immunology Advancing Practice, which is run as a distance learning degree. Although now semi-retired, he is a Visiting Fellow at the university, so that he can continue to run the Immunology Masters Degree as well as continuing with his research and writing, as well as some teaching.