PWS: Quality of Life
Prader-Willi Syndrome: Quality of Life takes a comprehensive look at PWS throughout the lifespan. It considers quality of life from the perspective of those with PWS, their parents, caregivers, and support workers. It is based on a 22-year follow-up study with 51 families, interviews with 25 younger families, review of 40 additional case files, examination of Canadian media reports, and a search of the international literature.
This book is written from a psycho-socio-educational perspective, examining the whoe person in the context of home, school and community settings. Hope is found in current best practices such as individualized programming, supported independence, and community living. Personal and family stories illustrate the range and variability within the syndrome and the uniqueness of individual circumstances.