Edited by
Brendan McCormack
Queen Margaret University, Edinburgh, Scotland, UK
Sandra van Dulmen
NIVEL (Netherlands Institute for Health Services Research), Utrecht and Radboud University Medical Centre, Nijmegen, The Netherlands
Hilde Eide
University College of Southeast Norway, Drammen, Norway
Kirsti Skovdahl
University College of Southeast Norway, Drammen, Norway
Tom Eide
University College of Southeast Norway, Drammen, Norway.
This edition first published 2017 © 2017 by John Wiley & Sons Ltd.
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The right of Brendan McCormack, Sandra van Dulmen, Hilde Eide, Kirsti Skovdahl and Tom Eide to be identified as the authors of the editorial material in this work has been asserted in accordance with law.
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Library of Congress Cataloging‐in‐Publication Data
Names: McCormack, Brendan, editor. | Dulmen, A. M. van, editor. | Eide, Hilde, editor. | Skovdahl, Kirsti, 1964– editor. | Eide, Tom, editor.
Title: Person‐centred healthcare research / edited by Brendan McCormack, Sandra van Dulmen, Hilde Eide, Kirsti Skovdahl, Tom Eide.
Description: Hoboken, NJ : Wiley, 2017. | Includes bibliographical references and index.
Identifiers: LCCN 2017026324 (print) | LCCN 2017026723 (ebook) | ISBN 9781119099611 (pdf) | ISBN 9781119099628 (epub) | ISBN 9781119099604 (pbk.)
Subjects: | MESH: Patient‐Centered Care | Health Services Research
Classification: LCC R727.3 (ebook) | LCC R727.3 (print) | NLM W 84.7 | DDC 362.1–dc23
LC record available at https://lccn.loc.gov/2017026324
Cover image: © CYCV/Gettyimages
Cover design by Wiley
Rigmor C. Baraas PhD, BSc (Hons)
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Chyrell Bellamy PhD, MSW
Assistant Professor
Department of Psychiatry
Yale School of Medicine
New Haven, Connecticut, USA
Stian Biong DrPH, MPH, RN
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Marit Borg PhD
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Espen Brembo MA, RN
Assistant Professor/Lecturer
Department of Nursing and Health Sciences
University College of Southeast Norway
Drammen, Norway
Kristin Briseid MA (Political Science)
Assistant Professor
Faculty of Social Studies
VID Specialized University
Norway
Catherine Buckley PhD, MSc(Nursing), BSc (Hons), PGCert. Narrative Research, RGN
Practice Development Lecturer
Northridge House Education and Research Centre, St Luke’s Home
Cork, Ireland
Shaun Cardiff PhD, MSc, BEd, RGN
Senior Lecturer
School of People and Health Studies
Fontys University of Applied Sciences
The Netherlands
Larry Davidson PhD, MA(Psy), MA(Phil)
Professor of Psychology
School of Medicine and Institution for Social and Policy Studies
Yale University
New Haven, Connecticut, USA
Jan Dewing PhD, MA, MN, BSc, Dip Nurs Ed, Dip Nurs, RN
Sue Pembrey Chair in Nursing, Director of The Centre for Person‐Centred Practice Research
Queen Margaret University
Edinburgh, Scotland, UK
Janne Dugstad MSc, BSc(Hons)
Director, The Science Centre Health and Technology
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Sandra van Dulmen PhD
Programme Coordinator of Communication in Healthcare
NIVEL (Netherlands Institute for Health Services Research)
Utrecht, the Netherlands
Professor of Communication in Healthcare
Radboud University Medical Center
Nijmegen, the Netherlands
Professor II
Faculty of Health Sciences
University College of Southeast Norway
Drammen, Norway
Hilde Eide PhD, MA (Psy), RN
Professor in Communication and Health Counselling, Research Director, the Science Centre Health and Technology
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Tom Eide PhD
Professor of Leadership, Ethics and Literature, and affiliated with the Science Centre Health and Technology
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Lisbeth Fagerström PhD
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Åbo Akademi University
Vaasa, Finland
Elizabeth Flanagan PhD, MS
Research Scientist
Yale Program for Recovery and Community Health
Yale University
New Haven, Connecticut, USA
Elisabeth Fosse PhD
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
University of Bergen
Norway
Jon V. B. Gjelle MSc, BSc
PhD Candidate
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Kimberly Guy CNA
Peer Support Supervisor and Trainer
Yale Program for Recovery and Community Health
Yale University
New Haven, Connecticut, USA
Linda Hafskjold MA (Clinical Health Care), BSc (Radiography)
PhD Student
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Lene A. Hagen MPhil, BSc
PhD Candidate
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Gaby Jacobs PhD, MSc, PGCE, BSc
Professor in Person‐Centred Practice
School of People and Health Studies
Fontys University of Applied Sciences
Eindhoven, the Netherlands
University for Humanistic Studies
Utrecht, the Netherlands
Famke van Lieshout PhD, MAsc, RN
Lecturer and Researcher
School of People and Health Studies
Fontys University of Applied Sciences
The Netherlands
Sylvia Määttä PhD, RN
Head, Department of Quality in Healthcare
Western Region/Associate Professor
Institute of Health and Care Sciences
University of Gothenburg
Sweden
Brendan McCormack DPhil(Oxon), RGN, RMN
Professor of Nursing/Head of The Division of Nursing and Associate Director
The Centre for Person‐Centred Practice Research
School of Health Sciences
Queen Margaret University
Edinburgh, Scotland, UK
Faculty of Health Sciences
University College of Southeast Norway
Drammen, Norway
Ottar Ness PhD
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Maria O’Connell PhD, MA
Associate Professor of Psychiatry and Director of Research and Evaluation
Yale Program for Recovery and Community Health
Yale University
New Haven, Connecticut, USA
Stina Öresland PhD, RNT
Associate Professor
Department of Nursing and Health Sciences
University College of Southeast Norway
Drammen, Norway
Hilde R. Pedersen MSc, BSc
PhD Candidate
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Astrid Skatvedt PhD
Assistant Professor
Faculty of Social Science, Department of Sociology and Social Work
University of Agder,
Norway
Kirsti Skovdahl PhD, MA, BSC, RN
Professor, Programme Director of the PhD Programme in Person‐Centred Healthcare
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Ingun Stang PhD
Associate Professor
Department of Health, Social and Welfare Studies
University College of Southeast Norway
Drammen, Norway
Vibeke Sundling PhD, MSc, BSc (Hons)
Associate Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Angie Titchen DPhil(Oxon), MSc (Rehabilitation Studies), Visiting Professor
Institute of Nursing and Health Research
Ulster University
Northern Ireland, UK
Steffen Torp PhD
Professor
Faculty of Health and Social Sciences
University College of Southeast Norway
Drammen, Norway
Caroline Williams MSc(Nursing), PGDip(Facilitation), PGCE(FE), BSc(Nurse Practitioner), RN
Professional and Practice Development Nurse
Hywel Dda University Health Board
Wales, UK
Teatske van der Zijpp PhD, MSc
Programme Lead, Technology in Care
School of People and Health Studies
Fontys University of Applied Sciences
The Netherlands
Person‐centred healthcare research is needed for service improvement and change. The world’s first PhD programme in person‐centred healthcare has run from autumn 2014 at the Faculty of Health Sciences at the University College of Southeast Norway (previously Buskerud University College). This was the start of a journey of international collaboration at our faculty, exploring different perspectives on what person‐centred research presupposes and implies.
Patients and service users can feel vulnerable as they journey through the health system. Persons living with long‐term health conditions, like mental health, substance abuse, dementia, stroke, chronic pain or diabetes have complex care needs that challenge health systems to respond in ways that keep the person at the centre of planning and decision‐making. This challenge to person‐centredness in healthcare is global. In Norway and beyond, the political vision is to create a health service that places the person, as the user of health services, in the centre of decision‐making. The slogan is: ‘No decision about me, without me’. In order to realise such a vision, our research needs to be interdisciplinary, informed by different perspectives and pluralistic regarding methodology, theory, and philosophy.
The Editors of this book reflect such a pluralistic approach to research. They are all leaders of and contributors to the PhD programme in person‐centred healthcare at the University College of Southeast Norway. They are each passionate about research and whilst they each bring different methodological perspectives to their writing, what they share in common is a passion for ‘the person’ in health services research. The Editors, having brought together researchers from different fields and environments, encouraged new joint authorships, and together they have turned the writing of the book into an innovation process. Marvellous!
Person‐centred healthcare research is a complex phenomenon. The book stimulates reflection and may serve as a guide for researchers at all levels. The PhD programme at the University College of Southeast Norway has a growing number of students studying person‐centred healthcare from different perspectives using different methodologies. We are confident that this programme will have a significant influence on the advancement of new approaches to person‐centred research and to our understanding of person‐centredness itself – what I am sure is the beginning of a global community of person‐centred doctoral researchers and post‐doctoral researchers of the future. I am sure this book will be of great benefit to them and to all other researchers aiming at creating new knowledge to improve person‐centredness in healthcare.
International recognition is growing that person‐centred healthcare offers a remedy to a continuing crisis in healthcare – a crisis in which clinicians and patients struggle to co‐produce personalised and compassionate healthcare informed by, rather than based on, restricted scientific knowledge. Person‐centred healthcare responds positively to this problem. It puts persons first in healthcare that bridges humanism and the sciences, including research. This book shows how health research on person‐centred care can be person‐centred. The Editors – world leaders in postgraduate education on person‐centred healthcare – have unified international authors around the axial notion that research on person‐centredness is fundamentally important, yet is insufficient unless it takes place in a person‐centred manner.
Through conceptualising person‐centredness and its foundations, the book first makes the case for conducting research to rehumanise modern healthcare in ways that balance the different warrants for healthcare decision‐making. The book then suggests how to infuse this research – and, in turn, teaching, policy and practice – with assumptions, values and methodologies faithful to the philosophy of person‐centredness. Examples of person‐centred research are provided to bring to life this movement from research on person‐centredness to such research being person‐centred. Critical to the latter development is the guidance offered on using person‐centred research designs and methodologies to deepen understanding and respect the personhood of research participants and researchers alike. Thus, the book helps to fill a gap within literature on health research methods and person‐centredness. I enthusiastically commend this much‐needed and highly original volume as an interdisciplinary resource for everyone producing or using person‐centred research for health.
This section of the book is concerned with the philosophical and theoretical location of person‐centred healthcare and person‐centred research. It explores the importance of person‐centred healthcare globally as well as the need for research that is undertaken through the philosophy of person‐centredness. The case for person‐centred research is made by drawing on a variety of theoretical and methodological perspectives, debating the relevance of existing methodologies and exploring research methods through a person‐centred lens. Chapters in this section also illustrate examples of these theoretical and methodological perspectives and enable the reader to consider how these can be operationalised.