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- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
Translating Chronic Illness Research into Practice presents recent developments in chronic illness research and their implications for clinical practice. It delivers both a synthesis and a critique of current chronic illness research and its applications to chronic illness prevention, treatment and care. It promotes advances in knowledge about chronic illness, including discussion of the future directions for chronic illness research and gaps in present knowledge about effective chronic illness prevention, treatment and care.
Key features:
- Contains contributions from internationally renowned researchers in chronic illness
- Focuses on three key concepts, translating research into practice, chronic illness and practice, and bridges the boundaries between them
- Is applicable to an international, multi-disciplinary readership
- For researchers and practitioners across health disciplines
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Seitenzahl: 462
Veröffentlichungsjahr: 2016
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Table of Contents
Cover
Title
Copyright
List of Contributors
Preface
Reference
1. Globalisation of Chronic Illness Research
Introduction
What is in a name?
Global crisis in chronic illness
Impact of chronic illness in developing nations
Trends in chronic illness research in developed nations
Policy drivers: taking action
Global initiatives for future chronic illness management
Conclusion
References
2. Transitional Processes and Chronic Illness
Introduction
The search
Defining transition
An emerging understanding of transition
Describing transition
Transition and identity
Transition and transformative learning
Transitional processes
A transition framework for practice
Conclusion
References
3. Translating Chronic Illness Research Across the Lifespan
Introduction
Human development across the lifespan
Key assumptions of the lifespan developmental perspective
Human development in old age
Applications of lifespan developmental perspectives in chronic illness research
Supporting age-appropriate development without jeopardising the safe management of serious chronic disease: the case of cystic fibrosis
Chronic illness in old age: providing developmentally appropriate integrity-promoting care to persons suffering from dementia
Conclusions and implications
References
4. Assisting People with Chronic Illness to Manage Co-Morbid Conditions
Introduction
Conceptualising co-morbidity
Social determinants of co-morbidities
The medical paradigm
Health-care systems
Co-morbidity management
Models of chronic illness management
Conclusion
References
5. Conceptualisation of Self-Management
Introduction
Background to the use of the term self-management
Historical developments in self-management
Associated concepts or models that overlap with or inform self-management
Alternative definitions of self-management
Conclusions: the future for chronic condition self-management
References
6. The Relevance of Self-Management Programmes for People with Chronic Disease at Risk for Disease-Related Complications
Introduction
Background
Theoretical framework
Overview of relevant research
Sample
Participation
Attrition
Discussion
Conclusion
References
7. The Potential of Technology for Providing Social Support to People and Families
Introduction
Background
The Internet as a health resource
Impact of advanced technology in fostering therapeutic gain: overview of relevant research
Social support delivery: considerations in selecting advanced technology methods
Into the virtual future …
References
8. Chronic Illness Research: Translating What We Know into What We Do
Introduction
The task ahead
The dose–response problem
The promise of research
Knowledge translation: emerging from naïveté
Embedding KT within research agencies and grants
Web-based KT innovations
What chronic illness research gets taken up?
Policy containers and the future of chronic illness
The future of chronic illness: systems change using stroke examples
Conclusion
References
9. Future Directions
Global perspective
Facilitating the will of the people
The evidence base
Technology and health promotion
Transition
Self-management and self-care
Health in the community
References
Index
End User License Agreement
List of Tables
6. The Relevance of Self-Management Programmes for People with Chronic Disease at Risk for Disease-Related Complications
Table 6.1
Overview of primary research
7. The Potential of Technology for Providing Social Support to People and Families
Table 7.1
Examples of interventions implementing advanced technology and their outcomes
List of Illustrations
2. Transitional Processes and Chronic Illness
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
Figure 3.1
Factors impacting on human development.
5. Conceptualisation of Self-Management
Figure 5.1
The Chronic Care Model.
Figure 5.2
The Flinders Model: a systemic approach.
Figure 5.3
The Flinders Model: a patient-centred partnership approach.
Guide
Cover
Table of Contents
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Translating Chronic Illness Research into Practice
Edited by
Debbie Kralik PhD, RN
Barbara Paterson PhD, RN
Vivien Coates PhD, RN
This edition first published 2010
© 2010 Blackwell Publishing Ltd
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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 Medicine140(11): 958–964.
1.Globalisation of Chronic Illness Research
Sally Wellard
Introduction
This chapter builds on my previous work (Wellard 1998) where I have explored discursive constructions of chronic illness and argued that discourses of science, individualism and normalisation underpinned our ways of working with people experiencing chronic illnesses and the research questions that are posed. The aims of this chapter are (a) to develop a contemporary understanding of chronic illness research globally and (b) to identify barriers and enablers to advancing knowledge about prevention and management of chronic illnesses.
A review of contemporary literature identified a number of significant shifts that are relevant to the aims of this chapter, most notably the recognition of chronic illnesses as an urgent problem affecting global health. Discourses of science remain evident, but an increasing emphasis on economic and social consequences of chronic illnesses is emerging. There are a number of challenges in attempting to gain a global view of work in the field of chronic illness. First, the literature surrounding chronic illness is vast and the volume of material is overwhelming. Second, the analysis presented in this chapter is limited by my reliance on the English language. Although there is considerable work related to chronic illness published in many other languages, it was not accessible to me. Third, there are limitations in the databases available for bibliometric analysis by researchers. For example, Hofman et al. (2006) identified that MEDLINE ‘does not equally represent all countries, journals or topics’ (p. 418), resulting in a poor or inaccurate representation of research in middle- and low-income countries.
The strategy adopted for developing a contemporary view of the globalisation of chronic illness work was to develop an integrative literature review with the goal of developing a critical analytical view of trends in the field. GOOGLE scholar (http://scholar.google.com/) and MEDLINE database (using PubMed: http://www.ncbi.nlm.nih.gov/sites/entrez/) were searched, identifying the range of literature published between 1995 and 2007. Additionally, a search of the World Health Organization (WHO) web pages (http://www.who.int/en/) revealed relevant reports and links. The main search terms used were chronic illness, chronic disease, research, management and prevention. References in recently published work were scrutinised, and textbooks were hand searched.
What is in a name?
The first striking feature in reviewing recent literature related to chronic illnesses is the variety of terms that are frequently used as synonyms for chronic illness with little acknowledgement of the meanings implied in their use. Predominant terms identified included chronic illness (CI), chronic disease (CD), chronic conditions (CC), non-communicable disease (NCD) and chronic illness and disability (CID). Terminology matters, and the absence of a clear definition can blur meanings and assumptions inherent in the arguments presented by authors. Gerber et al. (2007) also noted the scarcity of a conceptual definition of disease and illness, raising concerns about adopting recommendations from research without understanding the premises on which such investigations are based.
The interchangeable use of the terms disease and illness is not new. Larsen (2006) argued that differentiation between these terms is important. Disease refers to the practitioner’s view of pathophysiological alterations in a person’s condition, associated with an objective medical view of a human ailment (Hofmann 2002) and the assignment of a diagnosis (Wikman et al. 2005). Illness, however, refers to the perceived human experience of living with and responding to disease by those with the disease and the people who live with them (Taylor 2005; Larsen 2006). Illness is frequently referred to as a subjective interpretation of disease (Hofmann 2002). These terms are broad and imprecise (Wikman et al. 2005); they could refer to minor conditions with low impact or very serious conditions with life-limiting effects.
The concept of chronicity, most simply defined, relates to the temporality of a condition where changes in health are ongoing and will not be cured by a short course of treatment or surgery (Miller 2000). Various publications attempt to create more specific detail, but there remains little consensus around a more precise definition. Some authors indicate that a chronic illness must have a duration of more than 6 months (O’Halloran et al. 2003), whereas others are less specific, with greater focus on the ongoing nature of illness and the accompanying complexity and adjustment in daily life as criteria denoting chronicity (Price 1996).
The terms chronic disease and chronic illness remain the most commonly used. Another term found in the psychological literature, chronic illness and disability (CID), is of interest in this discussion because it assumes a coupling of illness and disability (Livneh 2001). Livneh and Antonak (2005), rather than defining CID, list characteristics commonly associated with CID to include some functional limitations and an effect on capacity to carry out daily activities; uncertain prognosis and a long-term need for medical and rehabilitative care; experience of psychosocial stress related to the condition; impact on family; and sustained financial loss (p. 12). This definition would exclude some common chronic ailments, such as hypertension, where there is often little or no impact on daily activities.
The recent emergence of new terminology appears to be an attempt to create an umbrella term that will be inclusive of the different understandings of chronic ailments and link different audiences to look more at the overarching issues related to chronicity in the world. For example, the term chronic conditions (CC) now frequently appears in Australian literature, used by the federal government agencies, and is often used interchangeably with chronic disease. For example, O’Halloran et al. (2003), in a report for the Australian Institute of Health and Welfare, defined chronic conditions as those lasting at least 6 months, showing a pattern of deterioration or periods of relapse and remission, having a poor prognosis or possible lack of curability and disease-related effects, including co-morbid conditions. The use of the word condition is increasingly visible in programmes that engage different stakeholders (consumers, health-care professionals and educationalists) who are sponsored by the Australian Department of Health and Ageing.
The term non-communicable disease (NCD) appears in many publications related to international discussion across a number of sectors (e.g. the WHO, United Nations and World Bank). Although the term is increasingly used in literature, there remains little definition and an implicit assumption that these terms are commonly understood. Non-communicable disease does focus attention away from infectious diseases but remains contentious as a descriptor for chronic illness/disease because some infectious diseases can also be chronic (e.g. malaria).
In this chapter, the term chronic illness has been adopted to refer to ongoing alteration in health, except where I am specifically addressing a particular disease or group of diseases, or representing the arguments of others.
Global crisis in chronic illness
Until recently, popular understandings of global health were dichotomised. Chronic illnesses were generally portrayed as ailments of the populations of developed countries (e.g. heart disease, diabetes and cancer) and associated with affluent lifestyles leading to increased risks linked with energy-dense high-fat diets and inactivity. Conversely, infectious diseases were largely portrayed as ailments of developing countries (e.g. bacterial and viral diarrhoeal diseases) associated with poverty and insufficient infrastructure to prevent their spread. The United Nations Millennium development goals adopted in 2000 reflect that dichotomised view, with a focus on addressing factors that will reduce the incidence of infectious diseases (more details of the goals are available at http://www.un.org/millenniumgoals/).
This dichotomised view has recently been challenged with increased attention to what is argued by many as a global epidemic of chronic disease (Horton 2005). The WHO estimates that death from chronic diseases in 2005 is double the death rate from the combined causes of infectious diseases, perinatal and maternal conditions and nutritional deficiencies (WHO 2005). The global distribution of mortality from chronic illness has significantly changed, with 80% of deaths from chronic illnesses now occurring in low- and middle-income countries (Strong et al. 2006).
The change in prevalence of chronic illness has been associated with the increasing ageing of the world’s population. Strong et al. (2005) estimated that ‘all chronic diseases account for 72% of the total global burden of disease in the population aged 30 years and over’ (p. 1579). This represents a significant burden not only for individuals and their families but also high economic and social costs for countries (WHO 2005). The WHO Global Report (2005) identified cardiovascular diseases, cancer, chronic respiratory diseases and diabetes as the leading contributing factors to the chronic illness epidemic. In many low- and middle-income countries, these diseases occur more commonly in younger adults than in high-income countries and result in earlier mortality. Chronic illness does not exist only among adults; there has been a worldwide increase in childhood obesity in the past decade in low-, middle- and high-income countries, with an associated rise in the prevalence of type 2 diabetes in children and adolescents (WHO 2005).
The risk factors of many chronic illnesses are well known. They are considered modifiable and include unhealthy diet, physical inactivity and the use of tobacco (WHO 2005). However, these risk factors associated with lifestyle are complex to address. Strong et al. (2005) argue against the common myth that unhealthy behaviours are related to poor choice of individuals, directing attention to the interplay of environment, economy and increasing urbanisation being influential in poor diet and limited access to activity in low- and middle-income countries. The influence and impact of chronic illness differs across the globe and similarly the emphasis in research differs.
Impact of chronic illness in developing nations
Research related to chronic illness in developing countries (low and middle income) has a strong emphasis on measuring the prevalence and impact of chronic illness, using mortality and disability-adjusted life years (DALYs) as indicators of the burden of disease (Strong et al. 2005). The growth in population-based health surveillance studies has facilitated a commensurate growth in research, expanding knowledge and understanding about the social determinants of health.
The investigation of the burden of disease has been undertaken for many decades, but has recently received greater prominence with the development of more sophisticated methodologies and improved access to data sets, facilitating a global analysis of information at the population level. It is now possible to link incidence of disease with both short-term and long-term health outcomes and with mortality (Mathers et al. 2001). Morbidity is assessed using DALYs, where ‘one DALY can be thought of as one lost year of healthy life and the burden of disease as a measurement of the gap between current health of a population and an ideal situation where everyone lives to old age in full health’ (Strong et al. 2005, p. 1579). The Global Burden of Disease study (WHO 2005) now represents analysis across a greater number of low- and middle-income countries with more detail, including information relating to educational levels. This global study provides baseline data from which effectiveness of interventions can be evaluated and further analysis of changes in distribution of mortality and burden of disease across countries can be made.
The goal of this chapter is not to discuss the status of any specific chronic illness; however, the level of obesity in low- and middle-income countries is striking and therefore will be briefly presented. Prentice (2006) reviewed the epidemiological data on obesity and reports that the obesity ‘pandemic is penetrating the poorest nations in the world – first amongst the urban middle-aged adults, but increasingly affecting semi-urban and rural areas, and younger age groups’ (p. 93). His examination of Gambia as a case study revealed significant differences in rates of obesity within the country, although the overall rate of obesity for the country was relatively low at 4%. Women were significantly more obese than men, with 32% of women over 30 years being obese, compared to less than 2% of males. Additionally, obesity was higher in urban-dwelling people. While childhood malnutrition remains a concern in developing countries, there is also an emerging incidence of childhood obesity in these countries. Poverty, reduced access to quality foods and limitations on physical activity associated with overcrowded urban developments are considered to be contributing to these changes in childhood obesity (WHO 2005).
There has been rapid expansion in the study of social factors associated with poor health. The seminal work of Doyal and Pennell (1979) exploring the political economy of health demonstrated that ill health is not solely related to medically defined causes, but is a product of inequalities arising from the social and economic organisation of society. In the past decade, considerable research has explored and expanded our understandings of what are now commonly referred to as the social determinants of health (Irwin et al. 2006). Gross inequalities in health have been identified within and between countries (Marmot 2005). The establishment of the Commission on Social Determinants of Health (a WHO initiative) in 2005 is an active strategy to advance systematic research to reduce health inequities in partnership with individual low- and middle-income countries (Irwin et al. 2006).
Poverty and inequity in consumption of resources underpin the social determinants of health (Judson 2004). Poverty is linked to social status, race, gender and education. Wilkinson and Marmot (2003) summarised the social determinants of health into 10 key areas to inform action to address inequities: the social gradient, stress, early life, social exclusion, work, unemployment, social support, addiction, food and transport. Broad-based action, rather than medical-specific action, is clearly indicated to address the social determinants of health. Continuing to invest in medically driven health services without concurrent attention to these factors will have little impact on the overall rates of chronic illness. For example, Le Galès-Camus (2005) argued that banning tobacco advertising and increasing taxes on cigarettes are effective preventative strategies against tobacco-related cardiovascular disease and cancer and are needed in low- and middle-income countries. This type of strategy has a much greater impact on reducing the rate of tobacco-related disease and reduces the subsequent demand for high-cost medical services. Prevention is considerably less expensive than treatment, but systematic preventative health programmes are limited in their effectiveness by inconsistent distribution in many countries.
Trends in chronic illness research in developed nations
Understanding the prevalence and impact of chronic illness remains part of the research agenda in high-income countries; however, given their greater resources, a number of additional areas of research related to chronic illness are prominent. There is now considerable understanding of the sociological aspects of living with chronic illness that has influenced the growth in the work exploring connections between peoples’ experience of illness and the ways in which they can be supported in that experience (Taylor & Bury 2007). There is extensive literature about the meaning and significance chronic illnesses have for individuals and their families across a wide variety of diagnoses (e.g. diabetes, renal disease and multiple sclerosis [MS], to name a few). Thorne and Paterson (2000) referred to this area of research as insider research, which has included exploration of bodily experiences of illness (Kelly & Field 1996; Wilde 2003), the impact of living with illness on people’s social worlds (Livneh 2001) and their experiences of stigma and social exclusion (Wellard & Beddoes 2005; Lubkin & Larsen 2006). There is a clear acknowledgement of the importance of illness narratives to people living with chronic illness (Charmaz 2000; Werner et al. 2004).
Personal accounts or narratives of illness experiences have facilitated increased understandings of the multiple ways in which people respond to chronic illness and develop personal approaches to assist them in living with the illness and its effects (Wellard 1998; Mengshoel & Heggen 2004). Hardy (2002) documented the diversity of ways in which narratives are expressed among those with chronic illness, and the way the Internet has been appropriated by many people to extend the form of their narrative expression. The Internet has expanded the available space for narratives, and the use of ‘home pages’ now provides a dynamic and potentially interactive space for moving beyond accounts of individual experiences to places where people also provide advice and, in some instances, advocate particular approaches to care. It is likely that growth in the provision of advice via the Internet will expand further with ‘e-commerce’, facilitating increased individual marketing of advice globally (Hardy 2002).
Another focus of recent research has been to understand the transitions that occur in the lives of people with chronic illnesses and how people respond and adapt to these transitions. Kralik et al. (2006) argued that transitions involve a change over time where the persons reconstruct their self-identity. Transitions for people with chronic illness are not linear and are differentiated from earlier work on illness trajectories that suggested predictable pathways and stages in disease progression (Wellard 1998). Transitions are triggered by turning point events (Rasmussen et al. 2007) and for people with chronic illness, these can be predictable or unpredictable, cyclical and potentially recurring throughout life and result in the persons redeveloping their ways of living with illness (Kralik 2002). In a recent study of young women with diabetes, relationships with people, both social and with health professionals, were found to be important in managing transitions successfully (Rasmussen et al. 2007).
The complexity of, and variable quality in, relationships between people with chronic illness and professionals in the health-care system have been widely reported and arguably contribute to a level of difficulty for many in managing their illness (Thorne 2006; Wellard et al. 2007). Frequently, health professionals act as gatekeepers of health services, effectively controlling access to resources. This is in part due to a need to ration resources but it is also a reflection of the authoritative power of professional knowledge within our current systems (Clapton & Kendall 2002; Thorne 2006). More recent challenges to the assumption of the health professional being the expert suggest the need to recognise that patients are experts in their own right; this recognition is an important part of building successful partnerships in health-care provision. Fox (2005) summarised the debate in identifying the forms of expertise that both patients and professionals bring to the health-care relationship. Patients have expertise in the specific experience of their illness, their social situation, the levels of risk they are prepared to accept, their own values and preferences for living and treatment choices. Health professionals bring expertise in general understanding of disease (including aetiology, diagnosis and prognosis), the available treatment options, associated risks and probable health outcomes. Both levels of expertise and perceptions of that expertise vary among patients and professionals (Fox 2005).
There has been a shift from the use of the label patient when referring to people with chronic illness to the label consumer in some literature. There are a number of different constructions of the term consumer within the chronic illness field. Consumer groups bring together interested people associated with a specific illness or group of illnesses (including patients, carers and professionals) to provide a public voice about the issues and concerns of the members (Allsop et al. 2004). For example, in Australia, the Chronic Illness Alliance has represented over 40 consumer and advocacy groups on matters of common concern to promote the interests of those with chronic illness to the government, health professional groups and health service providers. The MS society is an example of a single illness focus consumer group that lobbies for resources, funds research and provides services specifically to people with MS. Consumer groups like these have the potential to influence policy and services that are more responsive to the needs of people with specific chronic illness.
The term consumer has also been used to refer to those people who use health-care services. The term is associated with a broader change within Western societies where ideologies of privatisation and market predominate (Allen 2007). Increased access to information has led to consumers being well informed and knowledgeable about their rights, including the right to be treated fairly in transactions and the right to purchase and consume what they desire. Consumers of health-care services have also become better informed about medical knowledge and treatment options (Woolf et al. 2005). However, Walker (2007) argued that the underpinning assumption that all consumers have equal capacity to choose and participate is fallacious because choices in health consumption are greatly influenced by individual circumstances including income, geographical location and disease severity.
Part of the consumer focus in health care has been the introduction of consumer models of care where partnerships between provider and consumer aim to deliver better outcomes; however, there are a number of impediments to engaging in consumer partnerships in health (Wellard et al. 2003; Penney & Wellard 2007). Barriers to engaging in partnerships for care with consumers are diverse and reflect the often experienced gap between espoused ideals and practical realities of health service delivery in a constantly evolving system where innovation frequently outstrips the resources to support it. While recognising the shift towards consumerism, the structures of health-care services continue to position users of services as patients who rely on professional expertise, frequently reconstructing paternalism as a silent foundation for professional practice.
Patient-centred care has been argued to be a cornerstone of health-care practice and identified as a shared value among health professionals where practice is guided by principles of what is ‘good’ for patients and their families (McGrath et al. 2006). Patient-centred care implies that care focuses on the persons as a whole, not only on their disease and symptoms, and therefore it requires partnerships between health-care professionals, patients, their family and caregivers. Partnerships arguably lead to improved health outcomes and increased levels of satisfaction for all stakeholders. However, there is increasing recognition that involving people in partnership for care is highly desired but difficult to deliver (Penney & Wellard 2007). There has been notable growth in the active involvement of consumers at the macro level of health-care services, including consumer roles on boards of management, ethics committees and consumer reference groups. These activities are important and have had some impact on shifting the focus of health-care organisations to consumer needs rather than professional and institutional needs. Wider micro-level partnerships in care are less evident. A recent doctoral work of Penney (2005) identified the struggle of both nurses and older consumers to understand how partnerships in care can occur in the current organisation of health-care services where staff experience constraints in both time and space. The structures of health-care services position consumers with the identity of patient and consequently subject to a range of mechanisms associated with legal and risk management regulations.
Policy drivers: taking action
The global challenge is increasingly clear. There is a need for radical shifts in the way health is managed to address the impact of the epidemic of chronic illness. Clarity about preventable risk factors and optimal disease management provide clear direction for action in the prevention and control of chronic illnesses. The WHO (2005) has developed a detailed evidence-based action plan to assist countries in identifying potential strategies for reducing the burden of chronic illness, which needs to target both populations and individuals and recognise the social determinants of health. Taxation and price control, for example, could make alcohol and tobacco less affordable and provide subsidies to reduce the costs of healthy foods. Similarly, investing in improving the built environment in community-based projects could assist in providing accessible safe spaces for increased activity. These are preventative strategies. Additionally, WHO (2005) makes recommendations for the effective improvement of chronic disease management including the establishment and maintenance of effective clinical information systems, the provision of multidisciplinary health-care teams with an emphasis on primary health care and support for patient self-management programmes. While the arguments in support of these strategies are clear, the feasibility of implementation is more problematic. Implementation of taxation reform and prioritisation of infrastructure development, which lays emphasis on preventative health, are sensitive political issues and in all countries compete with other stakeholders who prioritise economic investment differently. Discussion of the complex socio-political landscape that influences the advancement of these strategies is beyond the scope of this chapter. However, the strategy for promoting patient self-management has received considerable attention and will now be explored.
Self-management has been increasingly adopted as part of health policy in a number of developed countries (e.g. in the UK policy ‘Expert Patient: A New Approach to Chronic Illness for the 21st Century’ [Fox 2005] and in Australia as part of the Chronic Disease Strategy [Dowrick 2006]). The idea of self-management programmes situates persons with chronic illness as central, with expertise and understanding of their illness and the ability (actual or potential) to assume responsibility of their management of their own health. Self-management programmes also assume some form of partnership between the individuals with the illness, the family, carers and health professionals. Self-management is most commonly conceived as involving:
… the individual with a chronic condition working in partnership with their carers and health professionals so that they can: know their condition and various treatment options; negotiate a plan of care; engage in activities that protect and promote health, monitor and manage symptoms and signs of illness, manage the impact of illness on physical functioning, emotions and interpersonal relationships.
(McDonald et al. 2004, p. 1 cited in Beckmann et al. 2007)
There are a number of different approaches to patient self-management, but the most widely adopted model internationally was developed by Kate Lorig and colleagues at Stanford University and based on a self-efficacy approach (Lorig & Holman 2003). The Stanford model uses a peer-led approach with a focus on sustained behavioural change. Advocates of this model have published evidence of demonstrated benefits using the widely accepted methods of randomised trials (Gifford et al. 1998; Lorig et al. 1999).
Self-management programmes also have critics. Concern has been raised about the focus self-management programmes place on individuals which ignores, or marginalises, the broader social and economic context that influences illness experiences and individual responses to self-care (Kendall & Rogers 2007). The underpinning assumption of locating the control at the individual level dislocates social responsibilities for illness management and places the burden of care on the person with the illness. Self-management programmes, while focused on individuals, are largely sponsored and managed by health-care agencies and therefore threaten the autonomy of individuals to determine their own pathway to care. As Kendall and Rogers (2007) point out, it is difficult for professionals ‘because they operate in systems that demand throughput at defined costs, which undermines their capacity to operate in ways that facilitate self-management’ (p. 131) and support models promoting compliance with professional advice.
Self-management programmes have been implemented as part of a suite of chronic illness management systems in developed countries. In the United Kingdom, self-management programming is the third tier after case management (intensive management of people with multiple complex conditions) and disease management (focused at people identified as those at risk). Self-management approaches are expected to support people at low risk, anticipated to be 70% of people with chronic illness (Kendall & Rogers 2007). Therefore, as Kendall and Rogers argue, self-management is being promoted as the predominant strategy for chronic illness management and is diminishing the broader social responsibility (and consequently reducing government costs) for care provision.
Global initiatives for future chronic illness management
It becomes evident from exploring selected aspects of chronic illness research across the globe that the impact of chronic illness is complex. There are wide variations, yet significant commonalities, in the prevalence and burden of chronic illnesses. However, there is a tendency for simplification in how chronic illness issues are presented because the complexity is hard to represent. Any approach to advancing chronic illness management needs to integrate population and individual strategies and include prevention and ongoing care and support. While the relative burden of illness and the resources available to support health care in countries vary, a major barrier to developing improved chronic illness care remains, with a strong emphasis on acute health problems in health-care systems (Weeramanthri et al. 2003; Yach et al. 2004).
This emphasis on acute health problems is grounded in the biomedical approach that primarily focuses on disease and remains the core orientation in medical and most health professional education for entry to practice (Tinetti & Fried 2004). Tinetti and Fried (2004) argue that the continued focus on disease and acute problems within a context of increasing chronicity ‘inadvertently leads to under treatment, overtreatment, or mistreatment’ (p. 179). Under-treatment arises when people present for care with symptoms that do not ‘fit’ with accepted diagnostic criteria or where interventions are limited to the biological cause of illness rather than also directed at addressing underlying social determinants of illness (e.g. counselling and direction to social support services). Overtreatment has been noted as including over-medication and associated adverse reactions as well as high levels of aggressive disease management in the very old. Mistreatment, Tinetti and Fried (2004) suggest, is inadvertent but occurs nonetheless because treatment is based on disease-based decision-making rather than patient preferences. These consequences of a disease-oriented system, identified by Homer et al. (2007) in a system analysis, showed that people who are sick have remained sick because of elements of the system and because of a lack of investment in prevention and early intervention. A disease orientation provides clinicians with more predictable approaches to care with evidence-based guidelines for a wide range of conditions, whereas chronic illness management presents considerably less certainty (Weeramanthri et al. 2003) with illness pathways that are highly variable and unpredictable.
Developing different approaches to health-care needs to facilitate a change in orientation from disease-based systems. There is a need for the development of public health systems that give preventative action as the highest priority and more appropriately target at-risk groups. This requires high levels of intersectorial cooperation and collaboration right from government through to local services. Nishtar et al. (2006) described the intersectorial cooperation in Pakistan where a partnership model involving government, non-government organisations and the WHO has guided the development of a national action plan on chronic disease. While outcomes of the partnership are yet to be realised, the strategy has aimed to obtain maximum benefit using the country’s limited resources. Their approach has seen a horizontal integration of existing programmes to reoroient health systems to include chronic illness, and arguably serves what previously was seen as two distinct populations within the country (those with chronic disease and those with communicable and acute disease).
Integrated approaches to chronic illness also reveal a need for greater investment in research that facilitates the transfer of scientific knowledge into practice. International priorities for research have been identified to include the determination of the best mix and organisation of strategies for chronic illness prevention, the continued efforts to develop cost-effective strategies for managing chronic illnesses and the impact of globalisation on risk and prevalence. Srinivasan and colleagues (2003), for example, discuss the need for interdisciplinary research related to the factors in the built environment that influence health and incorporate understanding, translating the outcomes of such work into practical policy and community actions to improve public health. Additionally, research needs to develop knowledge about the political aspects of health policy development and identify strategies to facilitate the earlier uptake of scientific knowledge about health promotion and prevention at all levels of government across the globe. There needs to be continued management of surveillance systems and sharing of data to support information sharing and trend analysis.
A further challenge for researchers involves bridging the gap between the current knowledge interests of developed and developing countries in understanding chronic illnesses and how the knowledge gained in one context might be applied to assist people in different contexts. Increased international research collaboration in addition to the existing global epidemiological studies is needed, particularly in addressing areas where issues are associated with the social determinants of health. International collaboration among low-, middle- and high-income countries could assist in the transference of knowledge and needs to address the current trend of unidirectional flow of knowledge.
Conclusion
There is now a greater acknowledgement and acceptance that there is a global epidemic of chronic illness that needs urgent broad-based action. While biomedical science remains important in understanding chronic illness, there has been a rapid shift in recognition of social and economic factors being instrumental in the increasing prevalence of chronic illnesses. The myth of chronic illness as linked to affluent lifestyles in developed countries has been debunked, and the burden of chronic illness is significantly greater in low- and middle-income countries.
Accompanying the recognition of the social determinants of health is a broader acceptance of the need to understand illness experiences from the perspectives of those who live with illness. Solutions to living with illness need to incorporate the expertise of people who have intimate knowledge of their illness experience. There is considerable knowledge now about the transitions people experience in the illness and the importance of relationships in managing those transitions. These relationships include health personnel who are increasingly challenged to work in partnership with people with chronic illness, rather than imposing their preferred approaches to care.
There are numerous challenges to developing effective strategies to reduce the burden of chronic illness for both individuals and their communities, as well as in creating systems of care to support those affected. Self-management is one of a number of strategies promoted to empower people to be in control of their care. However, there are risks in relying on this model alone; it potentially could act as a mechanism for the transference of responsibility from the state to individuals.
While there is vast research and associated knowledge creation across the globe related to chronic illness, there is minimal exploration of how the knowledge could be transferred and benefit nations of different socio-economic status. There are considerable opportunities for interdisciplinary and international collaboration to facilitate knowledge and resource sharing. These exchanges need to increase the flow of knowledge from less developed nations, rather than the most commonly occurring flow from developed nations to the rest of the world.
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