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.

• Format: ePub

Produktbeschreibung

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

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Produktdetails

• Verlag: Mac Keith Press
• Seitenzahl: 412
• Erscheinungstermin: 28. März 2013
• Englisch
• ISBN-13: 9781908316615
• Artikelnr.: 39498651

Autorenporträt

Gabriel M Ronen, MD, MSc (health research methodology), FRCP(C) (paediatric neurology) Professor of Paediatrics, McMaster University, Hamilton, Ontario, Canada As a paediatric neurologist he has a wide range of experience with children and youth with neurological conditions. He has been an active clinician, researcher, teacher and mentor with a particular interest in children with epilepsy. Peter L Rosenbaum, MD, CM, FRCP(C) Professor of Paediatrics, CanChild Centre for Childhood Disability Research, IAHS Building Room 408, McMaster University, 1400 Main Street West, Hamilton ON L8S 1C7 Canada Research Chair in Childhood Disability Research, Mentoring and Dissemination As a Developmental Paediatrician he has had a wide-ranging experience of childhood disability, with a particular interest in cerebral palsy. For the past 40 years he has been an active clinician, researcher, teacher, mentor, author and editor. In 1989 he co-founded CanChild Centre for Childhood Disability Research and in 2000 he was recognized with the Canadian Paediatric Society's highest award, the Ross Award. Honorary degree Doctor of Science from Universite Laval (2005). In 2007 he was awarded the AACPDM's first Mentorship Award. He is the North American Editor for Developmental Medicine and Child Neurology journal from Mac Keith Press.

Inhaltsangabe

Chapter 1: Setting the Stage: Introduction and general overview. Gabriel
Ronen and Peter Rosenbaum, McMaster University
Section A: Concepts and perspectives of outcomes
(i) Contemporary Concepts in Health, Disability and Life Quality
Chapter 2: Concepts and perspectives on 'health' and 'outcomes'. Gabriel
Ronen and Peter Rosenbaum, McMaster University
Chapter 3: 'Quality of life' and 'health-related quality of life'.Rebecca
Renwick, University of Toronto
Chapter 4: 'Health status' and the usefulness of the ICF framework:
clinical and program perspectivesOlaf Kraus de Camargo & Nora Fayed,
McMaster University
Chapter 5: The role of 'participation' in the lives of children and youth
with neurodevelopmental conditions.Dana Anaby McGill University & Mary Law,
McMaster University
(ii) Life Issues in Children and Young People with neurodevelopmental
conditions.
Chapter 6: A developmental perspective on childhood neurological
conditions. Peter Rosenbaum and Gabriel Ronen, McMaster University
Chapter 7: Psychological impact of living with a neurodevelopmental
condition. David Dunn & Michelle Thorne Indiana University
Chapter 8: The characteristics of peer relations among children with
neurological and developmental conditions. Tracy Vaillancourt,Jennifer
Hepditch, Irene Vitoroulis, Amanda Krygsman, Christine Blain-Arcaro,
University of Ottawa & Patricia McDougall, St. Thomas More College,
University of Saskatchewan
Chapter 9: Romantic relationships and sexual experiences. Diana Wiegerink &
Marij Roebroeck Erasmus University Rotterdam
(iii) Contextual Factors in the Lives of Children and Young People with
neurodevelopmental conditions.
Chapter 10: Contextual facilitators: Resilience, Coping and Sense of
Coherence. Kim Schonert-Reichl University of British Columbia & Veronica
Smith University of Alberta
Chapter 11: The family does matter! Lucyna Lach, McGill University
Chapter 12: Stigma: A pervasive contextual barrier. Ann Jacoby, University
of Liverpool & Joan Austin Indiana University
Chapter 13: Advancing the rights of children with neurodevelopmental
conditions. Sheila Jennings York University, Toronto
Section B: Quality of life outcomes: Methods and measurements
Chapter 14: Measurement concepts, standards and perspectives of
patient-reported outcomes. Aileen Davis, University of Toronto
Chapter 15: Practical considerations in choosing Health, Quality of life
and health-related quality of life Scales for Children.  Nora Fayed,
McMaster University
Chapter 16: Complexity in the lives of children and young people with
neurological and developmental conditions: The role of qualitative
research. Debra Stewart McMaster University
Chapter 17: Understanding self and proxy ratings. Gabriel Ronen & Davis
Streiner, McMaster University
Chapter 18: Ethics of patient reported outcome measures. David Streiner,
McMaster University
Section C: Opportunities to improve quality life outcomes 
(i) Education and Disability
Chapter 19: Knowledge translation: Accessing and using the best evidence to
improve child and family outcome. Iona Novak University of Notre Dame
Sydney, Australia, Dianne Russell McMaster University, and Marjolijn
Ketelaar University Medical Center Utrecht and Rehabilitation Center De
Hoogstraat Utrecht, the Netherlands
Chapter 20: Interprofessional Education and Collaboration: Key Approaches
for Improving Care. Scott Reeves University of California, San Francisco
Chapter 21: A specialized learning environment can enhance the outcomes of
children with cognitive impairment. Elizabeth Kerr Hospital for Sick
Children Toronto & Miriam Riches OISE-University of Toronto
(ii) Growing into Adulthood with a Childhood Neurodevelopmental Condition.
Chapter 22: Transition to adulthood: enhancing health and quality of life.
Jan Willem Gorter McMaster University, and Marij Roebroeck Erasmus
University
Chapter 23: Why we need adult specialists for people with childhood onset
neurodevelopmental conditions. Bernard Dan, Free University of Brussels 
Chapter 24: Longitudinal approaches to populations with childhood onset
neurodevelopmental conditions: Australian experience with Rett syndrome.
Jenny Downs &Helen Leonard, University of Western Australia
(iii) Youth, Disability and Society. 
Chapter 25: Policies, Programs and Practices: The tensions about life
quality outcomes. Gina Glidden, McGill University; & Rachel Birnbaum
University of Western Ontario
Chapter 26: What is the emerging role of parent and community organizations
in health promotion? Primarily a UK experience. Chris Morris & Val
Shilling, Medical School Exeter UK
Section D: Conclusions and future developments
Chapter 27: The ICF and Life Quality Outcomes. Peter Rosenbaum and Gabriel
Ronen, McMaster University