Health care in the Western world is undergoing a major renaissance in the twenty-first century. Among the exciting developments is the recognition of the importance for healthcare providers to identify, understand, respect, and measure people's existential experience of their life with a chronic health condition. These perspectives - complementary to clinicians' and researchers' traditional biomedical focus on health - include an awareness of the life-course experiences of people who have these disparate conditions. There is an increasing recognition of the need to take account of these collective Implications in the development and delivery of services for the people we are trusted to help.
This book takes a 'non-categorical' approach to health issues. There is abundant evidence that, despite huge variation in the underlying biomedical causes and features of various chronic health conditions, there is considerable common ground among these conditions with respect to their impact on the lives of the people who have them. The science of the measurement of patient-reported outcomes is being developed and applied in ways that allow health service professionals and researchers to gain a solid understanding of what people with chronic conditions experience in their lives as a consequence of these conditions, and how professionals can nse these insights to engage with people to develop and deliver services that are responsive to these personal realities.
In this book the authors address current concepts, evidence, measurement science, challenges, and opportunities to study, understand, and apply what we are learning from people about their lives with chronic health conditions. The particular focus of this volume is the experience of children and young adults - people who are growing up with neurological and developmental conditions. Unfortunately there has often been pessimism and a feeling that nothing could be done to help them. We believe that this book illuminates three major themes: (1) that people's lives are rich and often satisfying 'despite' even significant biological imperfections; (2) that there are important lessons to be learned from people living those lives; and (3) that there are respectable scientific methods to be applied to move the field forwards.
This book is written for everyone who is interested in these important aspects of the health of children and young people with neurological and developmental conditions and their families. As the editors of this book, we hope that readers will find these ideas accessible and useful. If these perspectives and concepts enrich the quality of the work we do in our roles as service providers, researchers, advocates, and policy makers, this book will have served its purpose. Gabriel M. Ronen, Peter L. Rosenbaum, McMaster University Ontario, Canada December 2012

AUTHORS1 APPOINTMENTS xi

FOREWORD xiv

PREFACE xvi

ABOUT THE EDITORS xvii

ACKNOWLEDGEMENTS xviii

COMMONLY USED ABBREVIATIONS xix

      1. SETTING THE STAGE: INTRODUCTION AND GENERAL OVERVIEW 1

      Gabriel M. Ronen and Pefer L Rosenbaum

SECTION A CONCEPTS 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

      5. THE ROLE OF PARTICIPATION 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. Thome 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) Contextual 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

      13. ADVANCING THE RIGHTS OF CHILDREN WITH NEURODEVELOPMENTAL CONDITIONS 166

      Sheila Jennings

SECTION B METHODS AND MEASUREMENT 191

      14. MEASUREMENT CONCEPTS, STANDARDS, AND PERSPECTIVES 193

      A/teen 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 VALUATIONS OF OUTCOMES 234

      Gabriel M. Ronen and David L Streiner

      18. ETHICAL ISSUES IN MEASUREMENT STUDIES 249

      David L Streiner

SECTION C OPPORTUNITIES FOR INTERVENTIONS 263

(i) Education and disability

      19. CAN TRANSLATION OF RESEARCH INFORMATION IMPROVE OUTCOMES? 265

      Iona Novak, Dianne J. Russell, and Marjolijn Kefelaar

      20. INTERPROFESSIONAL EDUCATION AND COLLABORATION: KEY APPROACHES FOR IMPROVING CARE 282

      Scoff Reeves

      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 Wiliem Gorier 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 Gtidden and Rachel Birnbaum

      26. THE ROLE OF PARENT 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 377

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