Table Of ContentRosenbaum-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
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Edited by Gabriel M Ronen and Peter L Rosenbaum ed e Developmental Conditions
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From the Preface
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“We believe that this book illuminates three major themes: that people’s lives ll O
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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
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Health care professionals need to understand patients’views of their condition and its g
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effects on health and well-being.This book builds on the World Health Organization’s a
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concepts of ‘health’,‘functioning’and ‘quality of life’for young people with neurodis- a
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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.
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• Avital resource to professionals and lay individuals both within and outside PB
the health care system. ETERIE
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• It will also beof interest to researchers in clinical and social sciences.
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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
