Patient Education for People with Parkinson s Disease and their Carers

Transcription

1 Patient Education for People with Parkinson s Disease and their Carers A Manual Edited by Marcia Smith Pasqualini and Gwenda Simons in association with the EduPark Consortium Quality of Life and Management of Living Resources

2

3 Patient Education for People with Parkinson s Disease and their Carers

4

5 Patient Education for People with Parkinson s Disease and their Carers A Manual Edited by Marcia Smith Pasqualini and Gwenda Simons in association with the EduPark Consortium Quality of Life and Management of Living Resources

6 Copyright 2006 John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England Telephone (+44) (for orders and customer service enquiries): Visit our Home Page on Session 2 Copyright 2006 The University of Portsmouth. The symbols used throughout this text were produced by Martina Schradi ( 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, scanning or otherwise, except under the terms of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London W1T 4LP, UK, without the permission in writing of the Publisher. Requests to the Publisher should be addressed to the Permissions Department, John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England, or ed to permreq@wiley.co.uk, or faxed to (+44) Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The Publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the Publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Other Wiley Editorial Offices John Wiley & Sons Inc., 111 River Street, Hoboken, NJ 07030, USA Jossey-Bass, 989 Market Street, San Francisco, CA , USA Wiley-VCH Verlag GmbH, Boschstr. 12, D Weinheim, Germany John Wiley & Sons Australia Ltd, 42 McDougall Street, Milton, Queensland 4064, Australia John Wiley & Sons (Asia) Pte Ltd, 2 Clementi Loop #02-01, Jin Xing Distripark, Singapore John Wiley & Sons Canada Ltd, 6045 Freemont Blvd, Mississauga, ONT, L5R 4J3 Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Library of Congress Cataloging-in-Publication Data Patient education for people with Parkinson s disease and their carers: a manual/edited by Marcia Smith Pasqualini and Gwenda Simons; in association with the EduPark Consortium. p. cm. Includes bibliographical references. ISBN-13: ISBN-10: Parkinson s disease Handbooks, manuals, etc. 2. Patient education Handbooks, manuals, etc. I. Pasqualini, Marcia Smith. II. Simons, Gwenda. III. EduPark Consortium. [DNLM: 1. Parkinson Disease Handbooks. 2. Patient Education methods Handbooks. 3. Caregivers education Handbooks. WL 39 P ] RC382.P dc British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN ISBN Typeset in 10/12 pt Optima by Thomson Digital. Printed and bound in Great Britain by Antony Rowe, Chippenham, Wiltshire. This book is printed on acid-free paper responsibly manufactured from sustainable forestry in which at least two trees are planted for each one used for paper production.

7 Contents About the Editors Preface Acknowledgements Contributors vii ix xi xiii Part I: Introduction to the EduPark Programme 1 Chapter 1: The nature of Parkinson s disease and the need for a multifaceted patient education programme 3 The EduPark Consortium Chapter 2: Structure of the programme and guidelines for leaders 13 The EduPark Consortium Part II: Programme Sessions 25 Session 1: Information 27 Pille Taba, Ülle Krikmann and Eve Kanarik Session 2: Self-monitoring 47 Gwenda Simons, Marcia Smith Pasqualini and Simon Thompson Session 3: Pleasant activities 71 Michael Macht, Heiner Ellgring, Christian Gerlich and Martina Schradi Session 4: Stress management for people with PD and for carers 89 Anu Lankinen, Vappu Viemerö and Anne Lehtonen Session 5: Management of anxiety and depression (for people with PD) and the carer s challenge (for carers) 147 Àngels Bayés Rusiñol, Mari Cruz Crespo Maraver and Anna Prats París Session 6: Social competence for people with PD and for carers 191 Noëlle G. A. Spliethoff-Kamminga and Janny de Vreugd Session 7: Social support 235 Pio Enrico Ricci Bitti and Lorena Candini Session 8: Review of the programme and a look forward 253 Christian Gerlich, Michael Macht, Martina Schradi and Heiner Ellgring v

8 Contents Part III: The EduPark Programme: Final Thoughts 263 The EduPark programme: Final thoughts 265 Marcia Smith Pasqualini and Gwenda Simons Appendix: Assessment Scales 269 References 271 vi

9 About the Editors Dr Marcia Smith Pasqualini is a clinical and academic neuropsychologist, currently working as an associate professor at Avila University in Kansas City, Missouri, USA. She received her Bachelor of Science degree from Tulane University and her PhD from the University of Missouri-Columbia. Dr Smith Pasqualini s primary area of research is the social neuroscience of emotion and facial expression. She was employed as a senior lecturer at the University of Portsmouth for nine years, and was the Principal Investigator for the United Kingdom for the EduPark project. Dr Gwenda Simons is a social psychologist, currently working as a research associate in the Department of Experimental Psychology at the University of Oxford. Dr Simons received her MA in social psychology from the University of Amsterdam, and her PhD from the University of Portsmouth. She has published research articles in the area of facial expression and emotion, with a particular interest in people with Parkinson s disease. Dr Simons worked as a research associate at the University of Portsmouth for the EduPark project. vii

10

11 Preface In 2002, the Commission of the European Union (EU) agreed to fund a research project entitled Patient Education in Parkinson s Disease (QLK EduPark), which ran for two-and-a-half years. The result of these efforts was the design and implementation of an eight-session group education programme for people with Parkinson s disease (PD) and their carers, developed within a European consortium. This consortium comprised research centres in Germany, Spain, Finland, Italy, The Netherlands, Estonia and the United Kingdom. In addition to dealing with the motor symptoms of PD, many people with PD struggle with psychological and social effects of the disease. In fact, people at every stage of PD can be faced with problems such as depression, anxiety, stressful social interactions, and difficulties communicating, all of which can disrupt their lives. The ultimate goal of the consortium, therefore, was to empower people with PD and their carers to improve their own quality of life. The programme was designed to complement the medical treatment that most people with PD already receive. Although the important function of education programmes in reducing the impact of chronic diseases on health-related quality of life is widely acknowledged, we found no comprehensive patient education programmes available specifically for people with PD. In addition, we recognised in the early stages of programme development that people living with and/or caring for people with PD face their own unique challenges when trying to cope with the effects of the disease. These relatives/friends/carers are often the primary sources of practical and emotional support for the person with PD, and we therefore decided to design a parallel education programme just for them. Professionals from many different disciplines were involved in the development of the education programme, including psychologists, specialised nurses, rehabilitation managers, general physicians, and neurologists. These professionals came from a variety of settings, including universities, self-help organisations, rehabilitation centres and hospitals. As a result, the development of the programme was itself a complex but highly rewarding European enterprise. It was not only interdisciplinary but also required taking into account diverse cultural backgrounds and variable health and social care conditions. We appreciated the strong support of the institutions involved, not the least of which was the EU, whose representatives helped us deal with complicated administrative and bureaucratic matters with much patience, keeping us true to our goal and to our timetable. The productive group spirit of the EduPark Consortium was supported by several roundtable meetings. We started with a kick-off meeting during the spring of 2003, in Würzburg, Germany, followed by workshops in Turku, Finland; Bertinoro/Bologna, Italy; Portsmouth, United Kingdom; Barcelona, Spain; and Leiden, The Netherlands. All the consortium members attended these meetings. We also held monthly conferences, which were very helpful for resolving minor problems, alerting everyone to the latest news and changes and keeping our team spirit high. The strong dedication of all partners within the consortium to complete the task in a professional manner, together with the rewarding feedback from the people with PD and carers who participated in the programme, more than compensated for the difficulties associated with such an undertaking. ix

12 Preface Empirical studies have shown that development of an effective patient education programme generally requires a systematic development process, a formative evaluation during the programme s initial implementation, and a summative evaluation (Van Driel & Keijsers, 1997). During the funding period of the EduPark project, the first two of these steps were accomplished, in three major stages: (1) basic development; (2) application and evaluation; (3) revision and final development. During the basic development stage, a first draft of the education programme was completed by the consortium of experts, with input and feedback from people with PD and carers. A modified Delphi technique was used. First, seven key components were identified and defined: (1) the ability to find information that was needed; (2) self-monitoring; (3) health empowerment through an increase in pleasant activities; (4) stress management; (5) management of anxiety and depression; (6) social competence, and (7) social support. Outlines of proposed subject areas for these seven key components were then prepared separately for people with PD and for carers, followed by development of more detailed contents for each session. Various approaches were used, including presenting information about PD and its effects on various aspects of daily life, teaching participants practical skills and helping participants to apply their knowledge toward self-management of the disease. The sessions were then finalised and a draft version of each session was prepared in English. Each draft was then translated into German, Spanish, Finnish, Italian, Dutch, and Estonian and the contents were adapted to local conditions as needed. During the application and evaluation stage, the standardised education programme was presented to groups of people with PD and their carers in the seven participating countries, with ongoing evaluation of its practicality and effectiveness. The results of these first trials informed our efforts during the revision phase, during which systematic collection of feasibility data continued. Participants were asked about the appropriateness of the learning objectives, the clarity of the content of the programme sessions and the overall quality of the programme. Moreover, participants completed standardised questionnaires related to quality of life. The group leaders made minor revisions of the instructions and materials as needed, and provided feedback to the consortium about their experiences. More substantive adaptations to session contents were made during the final development stage, with the agreement of all partners. This development process resulted in a programme that can be adapted to many different cultural backgrounds. We hope that you will find it useful for providing the psychological and social support that so many people with PD and their carers have indicated they need, empowering them to improve their quality of life and to deal with the effects of PD in the best way they can. Marcia Smith Pasqualini Gwenda Simons The sessions, including handouts, are available free online to purchasers of the manual. Visit to find out how to access and download the sessions. x

13 Acknowledgements This manual would not have been possible without the financial and practical support of the EU, as well as from people and institutions in each of the seven partner countries in the consortium. In the United Kingdom, we are grateful for the input and support from members of the local branches of the Parkinson s Disease Society (PDS) in Fareham and Portsmouth, and in particular Valerie and John Rossiter, who have encouraged our research and education efforts over a period of several years. We would also like to specifically thank the people with PD and their partners in the greater Portsmouth area who volunteered to take part in our sessions and to provide us with valuable feedback. Staff Nurse Ceri Rayner from the Trevor Howell Day Hospital in Portsmouth helped us develop and adapt the education programme for use in the United Kingdom, led several of the groups when the programme was first implemented, and provided helpful feedback in the writing and editing of this manual. Thank you, Ceri! We would also like to thank administrators and staff at the Trevor Howell Day Hospital, and the East Hampshire Primary Care Trust, for their assistance in implementing the programme and providing us with a suitable location in which to conduct the sessions. Dr Simon Thompson participated in the organisation and administration of the EduPark grant and contributed to the development of the programme materials. We appreciate the help of Monja Knoll and Craig Steer, students at the University of Portsmouth, who assisted in the implementation of the programme. Finally, this project could not have been completed without the continued support of the University of Portsmouth, and in particular the Head of the Department of Psychology, Dr Vasudevi Reddy. xi

14

15 Contributors Àngels Bayés Rusiñol Neurologist, Director of Unitat de Parkinson, Centro Médico TEKNON, Spain; Fundació de Neurocirurgia Funcional, Spain. Mari Cruz Crespo Maraver Clinical Psychologist, Unitat de Parkinson, Centro Médico TEKNON, Spain; Fundació de Neurocirurgia Funcional, Spain; Hospital St Joan de Déu de Manresa, Spain. Lorena Candini Researcher, Department of Psychology, University of Bologna, Italy. Heiner Ellgring Professor of Psychology, Department of Psychology, University of Würzburg, Germany. Christian Gerlich Research Coordinator, Department of Psychology, University of Würzburg, Germany. Eve Kanarik Psychologist, Department of Rehabilitation, Tartu University Clinics, Estonia. Ülle Krikmann Neurologist, Department of Neurology and Neurosurgery, University of Tartu, Estonia. Anu Lankinen Psychologist, Finnish Parkinson s Disease Association, Finland. Anne Lehtonen Rehabilitation Manager, Finnish Parkinson s Disease Association, Finland. Michael Macht Professor of Psychology, Department of Psychology, University of Würzburg, Germany. Anna Prats París Neuropsychologist, Unitat de Parkinson, Centro Médico TEKNON, Spain; Fundació de Neurocirurgia Funcional, Spain. Pio Enrico Ricci Bitti Professor of Psychology, Department of Psychology, University of Bologna, Italy. Martina Schradi Researcher, Department of Psychology, University of Würzburg, Germany. xiii