Translating Chronic Illness Research into Practice

Debbie Kralik, Barbara Paterson, Vivien Coates, Debbie Kralik, Barbara Paterson, Vivien Coates

• Publisher: Wiley-Blackwell
• Year: 2016
• Print ISBN: 9781405159654
• eBook ISBN: 9781119293224
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

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

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 environmen...

Table of contents

• Cover
• Table of Contents
• Title
• Copyright
• List of Contributors
• Preface
• 1. Globalisation of Chronic Illness Research
• 2. Transitional Processes and Chronic Illness
• 3. Translating Chronic Illness Research Across the Lifespan
• 4. Assisting People with Chronic Illness to Manage Co-Morbid Conditions
• 5. Conceptualisation of Self-Management
• 6. The Relevance of Self-Management Programmes for People with Chronic Disease at Risk for Disease-Related Complications
• 7. The Potential of Technology for Providing Social Support to People and Families
• 8. Chronic Illness Research: Translating What We Know into What We Do
• 9. Future Directions
• Index
• End User License Agreement