The partnership between parents and professionals is at the core of caring for children with life-limiting conditions. Although there is an infinite diversity among children with life-threatening illness they share features in common - the progression of the child's disease; the emotional burdens on all the family of severe illness (often long term) and death; and the balance between the child's need for technical and scientific medical care, and the whole family's need for emotional and spiritual support. This book reflects the families' tragic experiences and acknowledges their real expertise in the care of their own children. Key ideas relevant to families and professional carers alike will run though the text; the loneliness and isolation; the need to listen to the child and his family; and the importance of communication and liaison. Contributors present models of good practice in the UK in children's respite hospices, hospitals, and the community. There are also chapters on bereavement, parent self-help groups, care for the professional carers, education, and children with AIDS. The book concludes by indicating how existing services might be improved to provide a comprehensive, flexible, and compassionate network of care for families and children afflicted by life-threatening disease.
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