Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence and Practice PDF
Preview Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence and Practice
Rosenbaum-final cover_19-11.qxd 21/11/12 12:44 Page 1 Clinics in Developmental Medicine CDM Clinics in Developmental Medicine Mac Keith Press Life Quality Outcomes Life Quality Outcomes i n in Children and Young People C h in Children and Young People with Neurological and i l d r Developmental Conditions e n with Neurological and L a Dn if Edited by Gabriel M Ronen and Peter L Rosenbaum ed e Developmental Conditions vY eo Q lou pn u mg a From the Preface eP li ne t to y Edited by Gabriel M Ronen and Peter L Rosenbaum ap “We believe that this book illuminates three major themes: that people’s lives ll O Ce are rich and often satisfying ‘despite’even significant biological imperfec- ow u tions; that there are important lessons to be learned from people living those ndit tc lives; and that there are respectable scientific methods to be applied to move itiohN om the field forward.” ne su e r o s l o Health care professionals need to understand patients’views of their condition and its g i c effects on health and well-being.This book builds on the World Health Organization’s a l concepts of ‘health’,‘functioning’and ‘quality of life’for young people with neurodis- a n d abilities: it emphasises the importance of engaging with patients in the identification of both treatment goals and their evaluation.Uniquely,it enables health care pro- fessionals 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. G A • Avital resource to professionals and lay individuals both within and outside PB the health care system. ETERIE RL • It will also beof interest to researchers in clinical and social sciences. LM R R O O S EN NE BN AA UN MD Mac Keith Press Clinics in Developmental Medicine life quality outcomes in children and young people with neurological and developmental conditions: concepts, evidence, and practice Clinics in Developmental Medicine Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence, and Practice Edited by gabriel m. ronen McMaster University Hamilton, ON Canada peter l. rosenbaum McMaster University Hamilton, ON Canada 2013 Mac Keith Press © 2013 Mac Keith Press 6 Market Road, London, N7 9PW Editor: Hilary M. Hart Managing Director: Ann-Marie Halligan Production Manager: Udoka Ohuonu Project Management: Prepress Projects Ltd The views and opinions expressed herein are those of the author and do not necessarily represent those of the publisher. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written consent of the copyright holders or the publisher. First published in this edition in 2013 British Library Cataloguing-in-Publication data A catalogue record for this book is available from the British Library ISBN: 978-1-908316-58-5 Typeset by Prepress Projects Ltd, Perth, UK Printed by Henry Ling Limited, Dorchester, England Mac Keith Press is supported by Scope Dedication As the editors of this volume we take great pleasure in dedicating the book to the people whose presence in our lives has had an overwhelming impact on our own life quality – to Michele, Lea and Raphael Ronen, and to Suzanne, Pauline, Joanna and Daniel Rosenbaum. We wish to express to them our love and affection, and to thank them for a lifetime of support as we have developed and pursued our interests as physicians, mentors, researchers and authors. We have tried to infuse the book with the life lessons we have learned together with our families, promoting themes of love, compassion, hope, resilience, and achievement that we believe are viable for people with neurological and developmental conditions. GMR and PLR Contents Authors’ 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 Peter 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 vii Contents 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. 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) 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 viii Contents 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 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 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 Ketelaar 20. interproFessionAl educAtion And collAborAtion: key ApproAches For improving cAre 282 Scott Reeves ix
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