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User Participation in Health and Social Care Research

User Participation in Health and Social Care Research

User Participation
voices, values and evaluation

User participation in research is still in its relative infancy with many

practical, ethical, moral, methodological and philosophical questions
unanswered. This text gathers together an international set of authors to

in Health and
explore these issues and begin to forge some practical solutions to each of
these concerns. The book includes contributions on the use and application
of narrative approaches, intervention and evaluation research,
methodological development and quality thresholds. It provides a practical
framework for all groups wishing to undertake research based on the

Social Care Research

principles and values of user participation.
The book is structured around ten original case studies which explore the
use of participatory methods in practice with a variety of groups across
diverse health, social care and community settings. These include older
people, including those with dementia, people with learning disability,
mental health service users and their carers, and children and young people.
Unique and often groundbreaking studies from Australia, Sweden, the UK,
and the USA are used to illustrate application of theory to research practice.
voices, values and evaluation
In addition the text:
● Considers the issues, challenges and rewards of user participation
research
● Draws on the actual experience of doing research and working with users
● Includes the voices and contributions of users in reporting research
EDITED BY
User Participation in Health and Social Care Research: Voices, Values and
Evaluation is key reading for students, researchers, practitioners and users
themselves wishing to undertake participative research involving service MIKE NOLAN
users.
Mike Nolan is Professor of Gerontological Nursing, Sheffield Institute for ELIZABETH HANSON
Studies on Ageing, University of Sheffield, UK.
NOLAN  HANSON  GRANT  KEADY
Elizabeth Hanson is Senior Lecturer at the ÄldreVäst Sjuhärad Research
Centre, University College of Borås and at the University of Kalmar,
GORDON GRANT
Department of Humanities, Sweden.
Gordon Grant is Research Professor in the Centre for Health and Social
JOHN KEADY
Care Research, Sheffield Hallam University, UK.
John Keady is Professor of Older People’s Mental Health Nursing at The
University of Manchester/Bolton, Salford and Trafford Mental Health NHS
Trust, UK.

Cover design Hybert Design • www.hybertdesign.com

www.openup.co.uk
 Page 1

User Participation in
Health and Social
Care Research
Voices, Values and
Evaluation

11:10:09:08:07 Page 1
 Page 2

11:10:09:08:07 Page 2
 Page 3

User Participation in
Health and Social
Care Research
Voices, Values and Evaluation

Edited by
Mike Nolan, Elizabeth Hanson,
Gordon Grant and John Keady

11:10:09:08:07 Page 3
 Page 4

Open University Press

McGraw-Hill Education
McGraw-Hill House
Shoppenhangers Road
Maidenhead
Berkshire
England
SL6 2QL

email: [email protected]
world wide web: www.openup.co.uk

and Two Penn Plaza, New York, NY 10121-2289, USA

First published 2007

Copyright © Mike Nolan, Elizabeth Hanson, Gordon Grant and John Keady 2007

All rights reserved. Except for the quotation of short passages for the purpose of
criticism and review, 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
permission of the publisher or a licence from the Copyright Licensing Agency
Limited. Details of such licences (for reprographic reproduction) may be obtained
from the Copyright Licensing Agency Ltd of Saffron House, 6–10 Kirby Street,
London, EC1N 8TS.

A catalogue record of this book is available from the British Library

ISBN-10 0 335 22205 6 (pb) 0 335 22206 4 (hb)

ISBN-13 978 0 335 22205 6 (pb) 978 0 335 22206 3 (hb)

Library of Congress Cataloging-in-Publication Data

CIP data applied for

Typeset by RefineCatch Limited, Bungay, Suffolk

Printed in Poland by OZ Graf. S.A.
www.polskabook.pl

11:10:09:08:07 Page 4
 Page 5

For Will Nolan 1955–2006

‘Nothing compares to you’

11:10:09:08:07 Page 5
 Page 6

11:10:09:08:07 Page 6
 Page 7

Contents

List of figures ix
List of tables x
List of contributors xi
Acknowledgements xix

1 Introduction: what counts as knowledge, whose knowledge

counts? Towards authentic participatory enquiry 1
Mike Nolan, Elizabeth Hanson, Gordon Grant, John Keady, Lennart
Magnusson

2 ACTION (Assisting Carers using Telematic Interventions to

meet Older people’s Needs): practitioners’ reflections on
a Swedish innovation 14
Elizabeth Hanson, Paul Svensson, Fredrik Arvevik, Lennart Magnusson

3 Partnerships in best practice: advancing gerontological

care in Scotland 33
Debbie Tolson, Irene Schofield, Jo Booth, Timothy B. Kelly

4 Changing the culture within care homes for older people 50

Sue Davies, Lewis Atkinson, Barry Aveyard, Una Martin, Scott
McCaffrey, Ann Powell

5 ‘A changing life’: co-constructing a personal theory of

awareness and adjustment to the onset of Alzheimer’s disease 69
John Keady, Sion Williams, John Hughes-Roberts, Pat and Mo Quinn

6 Innovative approaches to living with dementia: an Australian

case study 89
Tina Koch, Jonathan Crichton

7 Looking in a fairground mirror: reflections on partnerships in

learning disability research 104
Alex McClimens, Gordon Grant, Paul Ramcharan

11:10:09:08:07 Page 7
 Page 8

viii CONTENTS

8 Doing user research: narratives of mental health service

user researchers 120
Graham Shields, Ray Wainwright, Gordon Grant

9 Carers of people with mental health problems as

co-researchers: reflections on the Partnerships in Carer
Assessment Project (PICAP) 134
Julie Repper, Gordon Grant, Monica Curran, Mike Nolan

10 Involving children, young people and parents in knowledge

generation in health and social care research 151
Veronica Swallow, Jane Coad, Ann Macfadyen

11 Engaging community leaders and students in rural American

community-based participatory research 166
Gene W. Marsh, Kristine Morgan Reimer, Lauren Clark

12 Conclusions: realizing authentic participatory enquiry 183

Mike Nolan, Elizabeth Hanson, Gordon Grant, John Keady

References 203
Index 225

11:10:09:08:07 Page 8
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 Page 9

List of figures

1.1 Applying the authenticity criteria: the ÄldreVäst Sjuhärad approach 13

2.1 The ACTION service 15
3.1 Overview of the Caledonian framework 36
3.2 Representation of the practice development model 37
3.3 Transformational learning journey 46
4.1 Feedback poster 60
5.1 Generating a life-story script 77
5.2 MQ’s personal theory 85
10.1 Example 1 of activity sheets used with children 159
10.2 Example 2 of activity sheets used with children 160
10.3 Example 3 of activity sheets used with children 160
11.1 A typical scene in Chaffee County 169

11:10:09:08:07 Page 9
 Page 10

List of tables

1.1 Typical values informing user participation in research 10

2.1 A proposed ACTION virtual platform for families and practitioners 30
2.2 Ways of working in partnership with families: key benefits and
challenges 32
3.1 Challenges and solutions 35
3.2 Overview of the 11 Communities of Practices involved in the
demonstration project 38
4.1 Support 67 Action Group terms of reference 55
4.2 Themes within interviews with relatives and staff 57
4.3 Achievements of the Support 67 Action Group 64
4.4 Recommendations for infusing culture change (after Robinson and
Rosher 2006) 65
5.1 CCI: embedded values 74
5.2 The life-story interview 76
5.3 MQ and PQ: practitioner-research contacts over study duration 80
10.1 Guidelines for researchers: information sheets and consent forms:
version 2.0 – 22 November 2005 COREC 155
11.1 Community as partner subsystems and assessment focal areas
(Anderson and McFarlane 2004) 172
12.1 The six senses in the context of caring relationships 193

11:10:09:08:07 Page 10
 Page 11

List of contributors

Fredrik Arvevik is an Assistant Nurse with a long experience of working with

older people living at home and their family carers in Borås municipality,
Sweden. Over the past seven years Fredrik has worked in the ACTION (Assist-
ing Carers using Telematic Interventions to meet Older people’s Needs) call
centre, together with Paul Svensson, where he has developed expertise in
partnership working with elders with chronic illness and their family carers.
Today, Fredrik also has a lead role in further developing family carer support
services in Borås municipality together with a group of practitioners and
carers. He is actively involved with colleagues in implementing COAT (Carers’
Outcome Agreement Tool) into everyday practice.

Lewis Atkinson is a retired Canon of the Church of England. He and his wife,
Connie, have been married 49 years and she is now in full-time care at Birch
Avenue suffering from Alzheimer’s disease. Lewis is a member of the Support
67 Group. He is also deeply involved with the Sheffield Care Trust User and
Carer Council and Chairs both the Older Adult Mental Health Sub-Group, and
the Sheffield Older Persons’ Empowerment Network which seeks to strengthen
the voice of older adults, particularly the weak and vulnerable in society.

Barry Aveyard is a Lecturer at Sheffield Hallam University. He has worked

with older people for most of his nursing career. He has been involved in a
number of research projects around older people’s mental health and has
published widely on the subject.

Jo Booth has been Senior Research Fellow in the Centre for Gerontological
Practice, Glasgow Caledonian University since 2004. Prior to this she gained
extensive experience in a number of clinical roles working with older people in
both acute and community services, the most recent as a Consultant Nurse
for Older People’s Services. She has directed the development of nursing
practice throughout her career and is a lead researcher in the Gerontological
Nursing Demonstration Programme. Her research interests focus on stroke
rehabilitation nursing and promoting urinary continence in older people.

Lauren Clark is Associate Professor and Associate Dean for Research and
Extramural Affairs, University of Colorado at Denver and Health Sciences
Center School of Nursing, USA. She teaches qualitative research, public health

11:10:09:08:07 Page 11
 Page 12

xii CONTRIBUTORS

nursing, and a course in cultural competence for advanced practice nurses. Her
research with Mexican immigrant and Mexican American families explores
childhood feeding and nutrition, particularly the cultural aspects of early
childhood obesity.

Jane Coad is a Senior Research Fellow (postdoctoral) in the Centre for Child
and Adolescent Health, the University of the West of England, Bristol, UK
and Honorary Senior Research Fellow in Family Talk; Communicating Gen-
etic Information across families at the University of Birmingham, UK. Jane
undertakes participatory research in Child Health and Children’s Nursing
using art-based research methods both locally in Bristol and Birmingham,
but also nationally. Her current research projects include engaging children
and families in research in acute and community health settings, young
people’s perceptions of health and the effects of the arts on young children’s
health.

Jonathan Crichton is a Research Fellow in the Research Centre for Languages

and Cultures Education in the School of International Studies at the University
of South Australia, where he teaches courses in Applied Linguistics. He is
interested in the place of language in people’s lives, particularly in situations
which affect their life chances. His research includes the role of language in
interactions within medical, health, legal and educational settings.

Monica Curran is a Sociologist with over 15 years’ experience of carer-related

research. She has a postgraduate degree from Manchester University in applied
social research, and a particular interest in how research partnerships are built
between research participants and researchers. Her previous research includes
the involvement of older people and carers in key decisions about how services
can be provided: complex needs assessment, discharge from hospital and entry
into care. Her most recent work was for the Partnership in Carer Assessment
Project at the University of Sheffield, studying carer assessment for carers of
people with mental health problems.

Sue Davies worked as a health visitor and as a senior nurse within a unit
providing services for older people in London before moving into higher edu-
cation. She recently completed a Department of Health postdoctoral fellow-
ship exploring quality of life and quality of care for older people living in
care homes and their families. Sue now holds an Honorary Readership at the
University of Sheffield and lives in Minnesota.

Gordon Grant is Research Professor in the Centre for Health and Social Care
Research, Sheffield Hallam University, and also Research and Innovation Lead,
Doncaster and South Humber Healthcare NHS (National Health Service) Trust.

11:10:09:08:07 Page 12
 Page 13

CONTRIBUTORS xiii

His main research interests centre on contributions and human capital in

vulnerable groups, family caregiving across the life-course and the inclusive
research agenda. Gordon is an editor of the British Journal of Learning Dis-
abilities. Ever the eternal optimist, he is a lifelong supporter of the other
Manchester football team (City not United).

Elizabeth Hanson is a Senior Lecturer at ÄldreVäst Sjuhärad (ÄVS) Research

Centre, University College of Borås (UCB) and the University of Kalmar,
Department of Humanities, Sweden. She acts as scientific leader in elder care at
ÄVS and of ACTION (Assisting Carers using Telematic Interventions to meet
Older people’s Needs), Department of Health Sciences, UCB. Elizabeth is a
Visiting Reader at the University of Sheffield. She is a nurse and currently a
steering board member and research representative for Carers Sweden. Her
research interests include family care support, palliative care needs of older
people and empowerment in research and practice.

John Hughes-Roberts is a Nurse Specialist, Division of Psychology, Mental

Health and Learning Disability, Conwy and Denbighshire NHS Trust, Wales.
His current role is leading the development of a memory clinic service across
the counties of Conwy and Denbighshire in North Wales. The aim of memory
clinics is to provide a service for people with early memory problems to
include assessment and diagnosis along with post diagnostic support and
interventions. His current interests include the subjective experience of early
dementia, in particular how individuals and their families adapt and cope with
a diagnosis of dementia.

John Keady trained as a Registered Mental Nurse in Warley Hospital, Brent-

wood, Essex between 1983 and 1986 before moving to North Wales and work-
ing as a community mental health nurse in a community dementia team.
From this time John has maintained an active research, publication and teach-
ing profile in dementia care, and in October 2006 he took up the appointment
of Professor of Older People’s Mental Health Nursing, a joint appointment
between the University of Manchester and the Bolton, Salford and Trafford
Mental Health NHS Trust. John is founding and co-editor of Dementia: The
International Journal of Social Research and Practice and the first edition of this
quarterly Sage journal was published in February 2002.

Timothy B. Kelly is currently the Head of the Division of Social Work at

Glasgow Caledonian University (GCU). Previously he was a Senior Research
Fellow within the Centre for Gerontological Practice at GCU and he maintains
active membership within the centre. His publications include articles on
gerontological practice in health and social care settings, groupwork practice,
involving service users and practice development. He is the Vice-President of

11:10:09:08:07 Page 13
 Page 14

xiv CONTRIBUTORS

the Association for the Advancement of Social Work with Groups and a mem-
ber of the editorial board for Groupwork.

In July 2005 Tina Koch was appointed in a Clinical Chair as a joint initiative
between Hunter New England (NSW) Health and the University of Newcastle,
Australia. An Older Person Research Program is being established with a strong
research team. The focus of recent research is storytelling with older people
within a participatory action approach. This has involved researchers in listen-
ing to the voices of frail older people with respect to their choices for future care.
Older people want to be involved in decisions that affect their lives. Develop-
ment of proactive strategies is critical in helping frail older people maximize
their potential, even when their life and decision-making options are reduced.

Ann Macfadyen has been a Senior Lecturer in Childhood and Family Studies
at Northumbria University in Newcastle since 1993. She has worked as a nurse
in both adult and children’s services in Glasgow, London and Newcastle. Over
the past 13 years she has been involved in a number of projects which have
aimed to promote children’s rights to be involved in decisions about their care.
More recent projects have focused on accessing children and young people’s
views in service evaluation and development.

Lennart Magnusson is a Senior Lecturer in the Department of Health Sci-

ences, University College of Borås and the Department of Humanities, Uni-
versity of Kalmar, Sweden. He is an engineer, nurse and founding director of
ÄldreVäst Sjuhärad Research Centre. Lennart is manager of ACTION and his
doctoral thesis ‘Designing a responsive support service for family carers of frail
older people using information and communication technology’ was based on
research carried out within the European Union (EU) and Swedish projects. He
has a long-standing interest in innovative ways of working to improve elder
care, family care support and to enhance job satisfaction for practitioners.

Gene W. Marsh is an Associate Professor and Chairperson, Division of Health

Experience and Technology at the University of Colorado at Denver and
Health Sciences Center, School of Nursing, USA. She also holds an Honorary
Professorship at the University of Sheffield School of Nursing and Midwifery,
UK. She teaches advanced public health nursing and research methodology.
Her current research focuses on determining appropriate hospice admission
criteria and care for Alzheimer’s disease patients and their families.

Una Martin is a retired Legal Executive specializing in Criminal and Matri-

monial law. She has been married to her husband, Ernest, for 50 years and he is
now in full-time care at Birch Avenue suffering from Alzheimer’s disease. She is
a founder member of the Support 67 Action Group and also a representative of

11:10:09:08:07 Page 14
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