Life quality outcomes in children and young people with neurological and developmental conditions : concepts, evidence and practice

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