Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions - Concepts, Evidence and Practice

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.ContentsAuthors' appointments xiForeword xivPrefa ce xviAbout the editors xviiAcknowledgements xviiiCommonly used abbreviations xix1. Setting the Stage: Introduction and general overview 1Gabriel M. Ronen and Peter L. RosenbaumSection A C oncepts and Perspectives 7(i) Contemporary concepts in health, disability, and life quality2. Concepts and Perspectives of 'Health' and 'LifeQuality' Outcomes in Children and Young peoplewith Neurological and Developmental Conditions 9Gabriel M. Ronen and Peter L. Rosenbaum3. Quality of Life for Young People with Neurologicaland Developmental Conditions: Issues and Challenges 22Rebecca Renwick4. 'Health Status' and the Usefulness of the ICFFramework: Clinical and programme perspectives 36Olaf Kraus de Camargo and Nora FayedviiiContents5. The Role of Pa rticipation in the Lives of Children andYoung people with Neurological and DevelopmentalConditions 51Dana Anaby and Mary Law(ii) Life issues in children and young people withneurodevelopmental conditions6. A Developmental Perspective on ChildhoodNeurological Conditions 65Peter L. Rosenbaum and Gabriel M. Ronen7. Psychological Impact of Living with aNeurodevelopmental Condition 74Michele C. Thorne and David Dunn8. Peer Relations among children with neurologicaland developmental conditions 87Tracy Vaillancourt, Jennifer Hepditch, Irene Vitoroulis, AmandaKrygsman, Christine Blain-Arcaro, and Patricia McDougall9. Romantic Relationships and Sexual Experiences inyoung people with neurodevelopmental conditions 107Diana Wiegerink and Marij Roebroeck(iii) C ontextual factors in the lives of children and youngpeople with impairments10. Contextual Facilitators: Resilience, Sense ofCoherence, and Hope 120Veronica Smith and Kim Schonert-Reichl11. The Family Does Matter! 136Lucyna Lach12. Stigma: A Pervasive Contextual Barrier 154Ann Jacoby and Joan K. AustinixContents13. Advancing the Rights of Children withNeurodevelopmental Conditions 166Sheila JenningsSection B Methods and Meas urement 19114. Measurement Concepts, Standards, and Perspectives 193Aileen M. Davis15. Practical Considerations in choosing health,health-related quality of life, and quality of lifeMeasures for Children and Young People 206Nora Fayed16. Complexity in the lives of children and young peoplewith neurological and developmental conditions:The Role of Qualitative Research 221Debra Stewart17. Self- and Proxy-rated Va luations of Outcomes 234Gabriel M. Ronen and David L. Streiner18. Ethical Issues in Measurement Studies 249David L. StreinerSection C O pportunities for Interventions 263(i) Education and disability19. Can Translation of Research Information ImproveOutcomes? 265Iona Novak, Dianne J. Russell, and Marjolijn Ketelaar20. Interprofessional Education and Collaboration: KeyApproaches for Improving Care 282Scott ReevesxContents21. The Effectiveness of a Specialized LearningEnvironment to enhance outcomes of children withcognitive impairment 293Elizabeth N. Kerr and Miriam Riches(ii) Growing into adulthood with a childhoodneurodevelopmental condition22. Transition to Adulthood: Enhancing Healthand Quality of Life for emerging adults withneurological and developmental conditions 306Jan Willem Gorter and Marij Roebroeck23. Why We Need Adult Specialists for people withchildhood-onset neurodevelopmental conditions 318Bernard Dan24. Longitudinal and Population-based Approaches tostudy the lifelong trajectories of children withneurodevelopmental conditions 329Jenny Downs and Helen Leonard(iii) Youth, disability, and society25. Policies, Programmes, and Practices: The tensionsabout Life quality outcomes 344Gina Glidden and Rachel Birnbaum26. the Role of Pa rent and Community Organizations inChild Health Promotion 357Christopher Morris and Val ShillingAfterword 36927. The ICF and Life Quality Outcomes 371Peter L. Rosenbaum and Gabriel M. RonenIndex