Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions (eBook, ePUB)
Concepts, Evidence and Practice
Redaktion: Ronen, Gabriel M.; Rosenbaum, Peter L.
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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, concept...
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
1. 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
2. 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
3. Quality of Life for Young People with Neurological
and Developmental Conditions: Issues and Challenges 22
Rebecca Renwick
4. 'Health Status' and the Usefulness of the ICF
Framework: Clinical and programme perspectives 36
Olaf Kraus de Camargo and Nora Fayed
viii
Contents
5. 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
6. A Developmental Perspective on Childhood
Neurological Conditions 65
Peter L. Rosenbaum and Gabriel M. Ronen
7. Psychological Impact of Living with a
Neurodevelopmental Condition 74
Michele C. Thorne and David Dunn
8. Peer Relations among children with neurological
and developmental conditions 87
Tracy Vaillancourt, Jennifer Hepditch, Irene Vitoroulis, Amanda
Krygsman, Christine Blain-Arcaro, and Patricia McDougall
9. 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
10. Contextual Facilitators: Resilience, Sense of
Coherence, and Hope 120
Veronica Smith and Kim Schonert-Reichl
11. The Family Does Matter! 136
Lucyna Lach
12. Stigma: A Pervasive Contextual Barrier 154
Ann Jacoby and Joan K. Austin
ix
Contents
13. Advancing the Rights of Children with
Neurodevelopmental Conditions 166
Sheila Jennings
Section B Methods and Meas urement 191
14. Measurement Concepts, Standards, and Perspectives 193
Aileen M. Davis
15. Practical Considerations in choosing health,
health-related quality of life, and quality of life
Measures for Children and Young People 206
Nora Fayed
16. Complexity in the lives of children and young people
with neurological and developmental conditions:
The Role of Qualitative Research 221
Debra Stewart
17. Self- and Proxy-rated Va luations of Outcomes 234
Gabriel M. Ronen and David L. Streiner
18. Ethical Issues in Measurement Studies 249
David L. Streiner
Section C O pportunities for Interventions 263
(i) Education and disability
19. Can Translation of Research Information Improve
Outcomes? 265
Iona Novak, Dianne J. Russell, and Marjolijn Ketelaar
20. Interprofessional Education and Collaboration: Key
Approaches for Improving Care 282
Scott Reeves
x
Contents
21. The Effectiveness of a Specialized Learning
Environment to enhance outcomes of children with
cognitive impairment 293
Elizabeth N. Kerr and Miriam Riches
(ii) Growing into adulthood with a childhood
neurodevelopmental condition
22. Transition to Adulthood: Enhancing Health
and Quality of Life for emerging adults with
neurological and developmental conditions 306
Jan Willem Gorter and Marij Roebroeck
23. Why We Need Adult Specialists for people with
childhood-onset neurodevelopmental conditions 318
Bernard Dan
24. Longitudinal and Population-based Approaches to
study the lifelong trajectories of children with
neurodevelopmental conditions 329
Jenny Downs and Helen Leonard
(iii) Youth, disability, and society
25. Policies, Programmes, and Practices: The tensions
about Life quality outcomes 344
Gina Glidden and Rachel Birnbaum
26. the Role of Pa rent and Community Organizations in
Child Health Promotion 357
Christopher Morris and Val Shilling
Afterword 369
27. The ICF and Life Quality Outcomes 371
Peter L. Rosenbaum and Gabriel M. Ronen
Index
Contents
Authors' appointments xi
Foreword xiv
Prefa ce xvi
About the editors xvii
Acknowledgements xviii
Commonly used abbreviations xix
1. 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
2. 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
3. Quality of Life for Young People with Neurological
and Developmental Conditions: Issues and Challenges 22
Rebecca Renwick
4. 'Health Status' and the Usefulness of the ICF
Framework: Clinical and programme perspectives 36
Olaf Kraus de Camargo and Nora Fayed
viii
Contents
5. 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
6. A Developmental Perspective on Childhood
Neurological Conditions 65
Peter L. Rosenbaum and Gabriel M. Ronen
7. Psychological Impact of Living with a
Neurodevelopmental Condition 74
Michele C. Thorne and David Dunn
8. Peer Relations among children with neurological
and developmental conditions 87
Tracy Vaillancourt, Jennifer Hepditch, Irene Vitoroulis, Amanda
Krygsman, Christine Blain-Arcaro, and Patricia McDougall
9. 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
10. Contextual Facilitators: Resilience, Sense of
Coherence, and Hope 120
Veronica Smith and Kim Schonert-Reichl
11. The Family Does Matter! 136
Lucyna Lach
12. Stigma: A Pervasive Contextual Barrier 154
Ann Jacoby and Joan K. Austin
ix
Contents
13. Advancing the Rights of Children with
Neurodevelopmental Conditions 166
Sheila Jennings
Section B Methods and Meas urement 191
14. Measurement Concepts, Standards, and Perspectives 193
Aileen M. Davis
15. Practical Considerations in choosing health,
health-related quality of life, and quality of life
Measures for Children and Young People 206
Nora Fayed
16. Complexity in the lives of children and young people
with neurological and developmental conditions:
The Role of Qualitative Research 221
Debra Stewart
17. Self- and Proxy-rated Va luations of Outcomes 234
Gabriel M. Ronen and David L. Streiner
18. Ethical Issues in Measurement Studies 249
David L. Streiner
Section C O pportunities for Interventions 263
(i) Education and disability
19. Can Translation of Research Information Improve
Outcomes? 265
Iona Novak, Dianne J. Russell, and Marjolijn Ketelaar
20. Interprofessional Education and Collaboration: Key
Approaches for Improving Care 282
Scott Reeves
x
Contents
21. The Effectiveness of a Specialized Learning
Environment to enhance outcomes of children with
cognitive impairment 293
Elizabeth N. Kerr and Miriam Riches
(ii) Growing into adulthood with a childhood
neurodevelopmental condition
22. Transition to Adulthood: Enhancing Health
and Quality of Life for emerging adults with
neurological and developmental conditions 306
Jan Willem Gorter and Marij Roebroeck
23. Why We Need Adult Specialists for people with
childhood-onset neurodevelopmental conditions 318
Bernard Dan
24. Longitudinal and Population-based Approaches to
study the lifelong trajectories of children with
neurodevelopmental conditions 329
Jenny Downs and Helen Leonard
(iii) Youth, disability, and society
25. Policies, Programmes, and Practices: The tensions
about Life quality outcomes 344
Gina Glidden and Rachel Birnbaum
26. the Role of Pa rent and Community Organizations in
Child Health Promotion 357
Christopher Morris and Val Shilling
Afterword 369
27. The ICF and Life Quality Outcomes 371
Peter L. Rosenbaum and Gabriel M. Ronen
Index
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