Health care professionals need to understand their patients' views of their condition and its effects on their health and well-being. This book builds on the World Health Organization's concepts of 'health', 'functioning' and 'quality of life' for young people with neurodisabilities: it emphasises the importance of engaging with patients in the identification of both treatment goals and their evaluation. Uniquely, it enables health care professionals to find critically reviewed outcomes-related information. The authors are leaders in their respective research fields and discuss theory, concepts, and evidence, and how these are applied in clinical settings and research applications.
Contents
Authors' appointments xi
Foreword xiv
Prefa ce xvi
About the editors xvii
Acknowledgements xviii
Commonly used abbreviations xix
Setting the Stage: Introduction and general overview 1
Gabriel M. Ronen and Peter L. Rosenbaum
Section A C oncepts and Perspectives 7
(i) Contemporary concepts in health, disability, and life quality
Concepts and Perspectives of 'Health' and 'Life
Quality' Outcomes in Children and Young people
with Neurological and Developmental Conditions 9
Gabriel M. Ronen and Peter L. Rosenbaum
Quality of Life for Young People with Neurological
and Developmental Conditions: Issues and Challenges 22
Rebecca Renwick
'Health Status' and the Usefulness of the ICF
Framework: Clinical and programme perspectives 36
Olaf Kraus de Camargo and Nora Fayed
viii
Contents
The Role of Pa rticipation in the Lives of Children and
Young people with Neurological and Developmental
Conditions 51
Dana Anaby and Mary Law
(ii) Life issues in children and young people with
neurodevelopmental conditions
A Developmental Perspective on Childhood
Neurological Conditions 65
Peter L. Rosenbaum and Gabriel M. Ronen
Psychological Impact of Living with a
Neurodevelopmental Condition 74
Michele C. Thorne and David Dunn
Peer Relations among children with neurological
and developmental conditions 87
Tracy Vaillancourt, Jennifer Hepditch, Irene Vitoroulis, Amanda
Krygsman, Christine Blain-Arcaro, and Patricia McDougall
Romantic Relationships and Sexual Experiences in
young people with neurodevelopmental conditions 107
Diana Wiegerink and Marij Roebroeck
(iii) C ontextual factors in the lives of children and young
people with impairments
Contextual Facilitators: Resilience, Sense of
Coherence, and Hope 120
Veronica Smith and Kim Schonert-Reichl
The Family Does Matter! 136
Lucyna Lach
Stigma: A Pervasive Contextual Barrier 154
Ann Jacoby and Joan K. Austin
ix
Contents
Advancing the Rights of Children with
Neurodevelopmental Conditions 166
Sheila Jennings
Section B Methods and Meas urement 191
Measurement Concepts, Standards, and Perspectives 193
Aileen M. Davis
Practical Considerations in choosing health,
health-related quality of life, and quality of life
Measures for Children and Young People 206
Nora Fayed
Complexity in the lives of children and young people
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