Prader-Willi syndrome: Quality of Life takes a comprehensive look at PWS throughout the lifespan. It consides 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 of 51 families,
interviews with 25 younger families, review of 40 additional case files, examination of Canadian media reports, and a search of the
The author writes from a psycho-socio-educational perspective, examining the person in the context of home,
school and community. 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.
Readers will be encouraged by the improvements in supports and services in recent years. They will be reassured by the personal accounts
and photographs illustrating daily life with PWS. They will read of heartaches and successes, and find hope in new perspectives and
Publication date: January 2011
Size: 6 x 9
16 tables and figures
Prader-Willi Syndrome: Quality of Life
Terrance (Terry) retired from his position as Director of Instruction:for Student Services for the Comox Valley School district in
2003. In retirement he is active in research on Prader-Willi syndrome. His doctoral dissertation was on Social and Psychological Aspects
of Prader-Willi Syndrome (U of Calgary, 1987). He is co-author of Prader-Willi Syndrome: Home, School and Community (Chapman &
Hall, 1993) and Prader-Willi Syndrome: Alternative Residential Options in Western Canada (PWSA-Ab, 1988). For 25 years he has worn
a part-time hat as a private rehabilitation consultant spedializing with Prader-willi syndrome.
Terrance has four children and seven
grandchildren. He and Joan have been married for 45 years and reside in Courtenay, British Columbia.
Copyright © 2011