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Edited by Helen K Warner. Published by Routledge, London, 2005, £22.99 (paperback), pp 176. ISBN 0-415-28038-9
This book addresses areas identified by the English National Board as essential for student nurses. However, the appeal would be wider than this, and includes paediatricians, trainees, therapists and family doctors. Those in education would find some of the chapters very relevant too, and would be heartened by the recognition of the overlap between health needs and education needs in the lives of children and young people with disabilities.
There are a number of very useful and apposite chapters that I have been dipping into over the last months when I should have been writing this review. The first one I looked at, by the editor Helen Warner, was on meeting the fundamental needs of children with disabilities, in this case the needs of such children in hospital. I had thought that my developmental paediatric patients would have had good experiences when admitted to our paediatric hospital, but in fact I had just had feedback of a very unsatisfactory admission. When arranging for the teenager in question to come in for overnight oxymetry, I had failed to mention her intellectual disability. As a result, no bed was made available for a caregiver, and the young person and her parent had to move to another ward late at night so that the caregiver could stay with her. As Dr Warner points out, communication needs to be excellent.
Then, when planning some research into the needs of families of children with autism spectrum disorders, I opened the book again. Guess what. The chapter by Claire Thurgate on “The importance of respite care” gave me a quick review of current theory and literature around this crucial issue. The same author has also written a useful chapter on transition planning, putting more emphasis on the educational side of things than is usual in our local practice where health and education are often quite separate.
There are other excellent short chapters, for example on pain management, and on the importance of movement and play. An omission, in my view, is the lack of any discussion of the role of gastrostomy feeding in children with disability and feeding difficulties in the chapter on feeding and eating. In my experiences there are certainly children where gastrostomy feeding has been a very positive move for both the child or young person and their caregivers. I for one would want student nurses and other readers to be aware of this valid option.
I would recommend this book to student nurses, and to people like me who already work with children with disabilities and need updating and reminding of what is important. It would be a good book for paediatricians to own and lend to doctors working on their teams for a short time. Moreover, it will be very useful as I prepare my lecture to postgraduate nurses on the topic of children with disabilities. I said it was apposite, didn't I?