Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions

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