Cover
Title
Copyright
List of Contributors
Preface
1. Reference
1. Globalisation of Chronic Illness Research
1. Introduction
2. What is in a name?
3. Global crisis in chronic illness
4. Impact of chronic illness in developing nations
5. Trends in chronic illness research in developed nations
6. Policy drivers: taking action
7. Global initiatives for future chronic illness management
8. Conclusion
9. References
2. Transitional Processes and Chronic Illness
1. Introduction
2. The search
3. Defining transition
4. An emerging understanding of transition
5. Describing transition
6. Transition and identity
7. Transition and transformative learning
8. Transitional processes
9. A transition framework for practice
10. Conclusion
11. References
3. Translating Chronic Illness Research Across the Lifespan
1. Introduction
2. Human development across the lifespan
3. Key assumptions of the lifespan developmental perspective
4. Human development in old age
5. Applications of lifespan developmental perspectives in chronic illness research
6. Supporting age-appropriate development without jeopardising the safe management of serious chronic disease: the case of cystic fibrosis
7. Chronic illness in old age: providing developmentally appropriate integrity-promoting care to persons suffering from dementia
8. Conclusions and implications
9. References
4. Assisting People with Chronic Illness to Manage Co-Morbid Conditions
1. Introduction
2. Conceptualising co-morbidity
3. Social determinants of co-morbidities
4. The medical paradigm
5. Health-care systems
6. Co-morbidity management
7. Models of chronic illness management
8. Conclusion
9. References
5. Conceptualisation of Self-Management
1. Introduction
2. Background to the use of the term self-management
3. Historical developments in self-management
4. Associated concepts or models that overlap with or inform self-management
5. Alternative definitions of self-management
6. Conclusions: the future for chronic condition self-management
7. References
6. The Relevance of Self-Management Programmes for People with Chronic Disease at Risk for Disease-Related Complications
1. Introduction
2. Background
3. Theoretical framework
4. Overview of relevant research
5. Sample
6. Participation
7. Attrition
8. Discussion
9. Conclusion
10. References
7. The Potential of Technology for Providing Social Support to People and Families
1. Introduction
2. Background
3. The Internet as a health resource
4. Impact of advanced technology in fostering therapeutic gain: overview of relevant research
5. Social support delivery: considerations in selecting advanced technology methods
6. Into the virtual future …
7. References
8. Chronic Illness Research: Translating What We Know into What We Do
1. Introduction
2. The task ahead
3. The dose–response problem
4. The promise of research
5. Knowledge translation: emerging from naïveté
6. Embedding KT within research agencies and grants
7. Web-based KT innovations
8. What chronic illness research gets taken up?
9. Policy containers and the future of chronic illness
10. The future of chronic illness: systems change using stroke examples
11. Conclusion
12. References
9. Future Directions
1. Global perspective
2. Facilitating the will of the people
3. The evidence base
4. Technology and health promotion
5. Transition
6. Self-management and self-care
7. Health in the community
8. References
Index
End User License Agreement

List of Illustrations

2. Transitional Processes and Chronic Illness
1. Figure 2.1 The four phases of transition (van Loon & Kralik 2005a, 2005b, 2006, 2007; Kralik et al. 2006a, 2006b, 2006c).
3. Translating Chronic Illness Research Across the Lifespan
1. Figure 3.1 Factors impacting on human development.
5. Conceptualisation of Self-Management
1. Figure 5.1 The Chronic Care Model.
2. Figure 5.2 The Flinders Model: a systemic approach.
3. Figure 5.3 The Flinders Model: a patient-centred partnership approach.

This edition first published 2010

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Library of Congress Cataloging-in-Publication Data

Translating chronic illness research into practice / edited by Debbie Kralik, Barbara Paterson, Vivien Coates.

p. ; cm.

Includes bibliographical references and index.

ISBN 978-1-4051-5965-4 (pbk. : alk. paper) 1. Chronic diseases. 2. Chronic diseases – Research.

I. Kralik, Debbie. II. Paterson, Barbara L. III. Coates, Vivien E. (Vivien Elizabeth), 1957–
[DNLM: 1. Chronic Disease – Review. 2. Biomedical Research – Review. WT 500 T772 2010]

RA644.5.T73 2010

616’.044 – dc22

2009040325

A catalogue record for this book is available from the British Library.

List of Contributors

Celeste Alvaro, PhD. Post-Doctoral Fellow and Project Coordinator, Health Promotion Research Centre, Dalhousie University, Halifax, Nova Scotia, Canada

Malcolm Battersby, PhD, FRANZCP, FAChAM, MBBS. Associate Professor and Director, Flinders Human Behaviour and Health Research Unit, Flinders University, Adelaide, South Australia

Alastair Buchan, Professor, University of Oxford (incoming Dean of Medicine), and Acute Stroke Programme, Nuffield Department of Medicine, John Radcliffe Hospital, Oxford, UK

Vivien Coates, PhD, RN. Professor of Nursing Research, School of Nursing, University of Ulster, Coleraine, County Londonderry, UK. Assistant Director of Nursing (R&D) Western Health and Social Care Trust, Trust Headquarters, Londonderry, UK

Max Hopwood, PhD, BA (Hons). Research Fellow, National Centre in HIV Social Research, The University of New South Wales, New South Wales, Australia

Marit Kirkevold, Professor of Nursing Science, University of Oslo, Oslo, Norway

Alison Kitson, PhD, RN, FRCN. Fellow, Green College, University of Oxford, Oxford, UK

Debbie Kralik, PhD, RN. General Manager, Strategy and Research, Royal District Nursing Service, South Australia, and Associate Professor, University of South Australia and Adelaide University, South Australia

Sharon Lawn, PhD, MSW, DipEd, BA. Researcher, Flinders Human Behaviour and Health Research Unit, and Senior Lecturer, Flinders University, School of Medicine, Department of Psychiatry, Adelaide, South Australia

Antonia van Loon, PhD, RN. Senior Research Fellow, Royal District Nursing Service, South Australia, and Adjunct Faculty, Flinders University, Adelaide, South Australia

Renee F. Lyons, PhD. Tier 1, Canada Research Chair in Health Promotion. Professor, School of Health and Human Performance, Department of Psychology, and School of Nursing, Dalhousie University. Senior Scientist, Atlantic Health Promotion Research Centre, Halifax, Nova Scotia, Canada

Lynn McIntyre, MD, MHSc, FRCPC. Professor and CIHR Chair in Gender and Health, Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Alberta, Canada

David B. Nicholas, PhD. The Hospital for Sick Children, Toronto, Ontario, Canada

Barbara Paterson, PhD, RN. Professor and Tier 1 Canada Research Chair in Chronic Illness, Faculty of Nursing, University of New Brunswick, Canada

Rene Pols, FRANZCP, FAFPHM, MBBS. Deputy Director, Flinders Human Behaviour and Health Research Unit. Senior Lecturer, Flinders University, School of Medicine, Department of Psychiatry, Adelaide. Consultant Psychiatrist, Southern Mental Health, Adelaide, South Australia

Ian Reckless, Consultant Physician, Oxford Biomedical Research Centre, John Radcliffe Hospital, Oxford, UK

Grace Warner, PhD. Assistant Professor, School of Occupational Therapy, Dalhousie University, Halifax, Nova Scotia, Canada

Sally Wellard, PhD, RN. Professor of Nursing, School of Nursing, University of Ballarat, Victoria, Australia

Allison Williams, PhD, RN. Postdoctoral Research Fellow, School of Nursing, The University of Melbourne, Victoria, Australia

Preface

The purpose of this book is to provide both a synthesis and a critique of recent advances in chronic illness research and to consider the applicability of that research to chronic illness prevention, treatment and care. The aim has been to present an overview of recent chronic illness research and to profile examples of the applications of such research in clinical practice.

Health care does not occur in a vacuum, but is intrinsically linked to politics, environment, culture and society. Globally, it is a fact that no country will have sufficient resources to address completely the health-care wants and needs of its people. Increasingly, we need to think globally but act locally using the best evidence available as an indicator of effective care intervention. Researchers and practitioners alike are aware that if research is to inform chronic illness prevention, treatment and care, it must be studied in ways that acknowledge the complexity of the chronic illness experience and transcend the boundaries of the relationship between the person with the illness and the health-care provider. Provided in this book are detailed examples in which interdisciplinary, transdisciplinary and multidisciplinary teams of researchers have developed initiatives that have been successful in assisting people with chronic illness to live well. However, many of these initiatives may be unknown to health-care practitioners who have confined their reading of research-based evidence to journals and texts in their own language, discipline and/or nation. The editors of this book have brought together internationally renowned researchers in chronic illnesses to present an overview of recent advances and to suggest future directions in chronic illness research, prevention, treatment and care.

To achieve the purpose of translating chronic illness research into practice, we focus on the key concepts of chronic illness, practice, research on chronic illness and translating research into practice. Within the book, several authors define chronic illness as they have interpreted it for their chapters. The concepts of translation and practice are defined as follows: ‘Translation research transforms currently available knowledge into useful measures for everyday clinical and public health practice’ (Narayan et al. 2004, p. 959).

The gap between research and practice is well recognised and this book illuminates some of the complexities of applying evidence to practice, and through these discussions aims to make a contribution to bridging this gap and thus is a resource to others wishing to underpin their practice with research. ‘Practice’ refers to the integration of knowledge and/or theory about health promotion, chronic disease prevention, the management of chronic illness or the experience of living with chronic illness in the performance of a clinical, research or policy development role. A wide range of research that is of relevance to chronic illness has been presented and authors have either provided a critique or an interpretation of its potential utility or limitations for application to practice. In this way, this book is making relevant research available to users and also illustrating how it might be, or indeed has already been, used in the fields of health promotion, clinical management or policy making.

Chapter 1 sets the scene by developing our understanding of chronic illness research globally, and then serves to identify barriers and enablers to advancing knowledge about prevention and management of chronic illnesses. The need is identified for a universal understanding of the chronic disease experience that goes beyond the biomedical perspective to build a stronger foundation for health promotion and disease prevention initiatives.

Transition, as a chronic illness experience, is the focus of Chapter 2. An overview of the different conceptualisations of transition is provided, detailing areas of ambiguity in the research. A transition framework relevant for health practice when working with people with chronic illness is detailed.

Chapter 3 explores the translation of chronic illness research across the lifespan of a person. It highlights the relevance of a developmental perspective on chronic illness in order to understand how chronic illness and human development interact to impact on the life of individuals and families across the lifespan. A review is provided of central tenets of the human development perspective, followed by a brief review of the current state of affairs with regard to applying a lifespan developmental perspective in chronic illness research. Finally, examples of chronic illness research informed by a lifespan developmental perspective are reviewed.

Chapter 4 provides an overview of how co-morbidity has been conceptualised within the various health-care disciplines, which has contributed to the fragmentation, replication and omissions in care of people with co-morbidities. The inequities in health care and the influences of the social determinants of how people with co-morbidity respond to and manage their health are also discussed. The debate about how best to manage multiple chronic illnesses from the various stakeholders is highlighted, drawing attention to the need for longitudinal approaches to health-care delivery to ensure continuity of care.

The international, historical and policy contexts of self-management are explored in Chapter 5. Concepts are described, which overlap with or inform an understanding of self-management from both the person’s perspective and the health professional’s perspective. This chapter also broadens our understandings of self-management concepts and practical applications of these.

Chapter 6 is a synthesis of published international research about self-management interventions within the field of type 2 diabetes. It presents a critical view of the self-management education and/or behavioural support interventions that have been reported in the published literature for the purpose of revealing how the way the interventions have been framed by researchers has influenced who chooses to participate and to remain in the intervention.

The focus of Chapter 7 is the emergence of technology for supporting patients and their families. An overview of research is provided regarding the use and outcomes of technology in fostering the self-management of chronic illness, including locating and discussing gaps and areas of ambiguity in current work.

Finally, Chapter 8 looks to the future of chronic illness and chronic illness research. It explores how we might positively modify future projections of chronic illness by building upon the revolution that is happening in some parts of the globe in knowledge translation.

Practitioners and researchers across the globe have much to learn from each other and enhancing this communication would benefit all parties. The growing burden of chronic illness – both communicable and non-communicable – across the world and creative responses by researchers in various disciplines to those challenges can provide important lessons (and research opportunities). This book is intended as a text and resource for researchers and practitioners across health disciplines as well as for graduate students within the health professions and the social sciences. It will also inform academic researchers, government policy experts, health plan and consumer representatives regarding available research in the field.

We anticipate that this book will contribute to the dialogue and debate that focus on and explicate our knowledge and the different ways of knowing in chronic illness research and practice. It has been a privlege to work with the contributing authors and to experience their commitment to the care and well-being of people living with chronic illness.

Debbie Kralik

Barbara Paterson

Vivien Coates

Reference

Narayan, K.M.V., Benjamin, E., Gregg, E.W., Norris, S.L., Engelgau, M.M. (2004) Diabetes translation research: where are we and where do we want to be? Annals of Internal Medicine 140(11): 958–964.