Globally, chronic disease and conditions such as diabetes, cardiovascular disease, depression and cancer are the leading causes of morbidity and mortality. Why, then, are public health efforts and programs aimed at preventing chronic disease so difficult to implement and maintain? Also, why is primary care—the key medical specialty for helping persons with chronic disease manage their illnesses—in decline? Public health suffers from its often being socially controversial, personally intrusive, irritating to many powerful corporate (...) interests, and structurally designed to be largely invisible and, as a result, taken for granted. Primary care struggles from low reimbursements, relative to specialists, excessive paperwork and time demands that are unattractive to medical students. Our paper concludes with a discussion of why the need for more aggressive public health and redesigned primary care is great, will grow substantially in the near future, and yet will continue to struggle with funding and public popularity. (shrink)

This paper starts by establishing a prima facie case that disadvantaged groups or individuals are more likely to get a chronic disease and are in a disadvantaged position to adhere to chronic treatment despite access through Universal Health Coverage. However, the main aim of this paper is to explore the normative implications of this claim by examining two different but intertwined argumentative lines that might contribute to a better understanding of the ethical challenges faced by chronic (...) disease health policy. The paper develops the argument that certain disadvantages which may predispose to illness might overlap with disadvantages that may hinder self-management, potentially becoming disadvantageous in handling chronic disease. If so, chronic diseases may be seen as disadvantages in themselves, describing a reproduction of disadvantage among the chronically ill and a vicious circle of disadvantage that could both predict and shed light on the catastrophic health outcomes among disadvantaged groups—or individuals—dealing with chronic disease. (shrink)

Chronic diseases represent the major illness burden of developed nations. A chronic disease databank system consists of parallel longitudinal data sets from diverse locations describing the courses of thousands of patients with chronic illness over many years. Illustrated by ARAMIS (The American Rheumatism Association Medical Information System), such data resources facilitate analysis of long term health outcomes and the factors associated with particular outcomes. A model for clinical investigation of contemporary disease is presented, based on (...) the overwhelming prevalence of chronic illness, the variability, complexity, and uniqueness of the individual patient course, the difficulties of traditional univariate reductionist approaches, and the time span required for study. In this model, data are systematically accrued and continually analyzed, and the data collected are gradually modified based upon evolving anticipation of future needs. The strategies underlying the development of ARAMIS are described, investigational results summarized, and future directions outlined. Keywords: ARAMIS, Chronic Disease Databanks, Prognosis, Health Outcomes CiteULike Connotea Del.icio.us What's this? (shrink)

What kind of a thing are chronic diseases? Are they objects, bundles of signs and symptoms, properties, processes, or fictions? Rather than using concept analysis—the standard approach to disease in the philosophy of medicine—to answer this metaphysical question, I use a bottom-up, inductive approach. I argue that chronic diseases are bodily states or properties—often dispositional, but sometimes categorical. I also investigate the nature of related pathological entities: pathogenesis, etiology, and signs and symptoms. Finally, I defend my view (...) against alternate accounts of the nature of disease. (shrink)

Chronic diseases are recognized as a leadingcause of mortality, morbidity, health careutilization and cost. A constant tailoring ofcare to the actual needs of individualpatients, complexity and long duration are thedistinguishing features of chronic diseasemanagement.

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how (...) they interrelate and influence each other. (shrink)

Chronic diseases are major causes of health inequalities. Community nurses can potentially make large contributions to chronic illness prevention and management in Israel but may be obstructed by professional dominance of physicians. However, insufficient research exists about community nursing in Israel, and how it may differ from other countries. This study aims to document chronic disease‐related community nursing roles in Israel, identify changes and trends in community nursing roles that may increase social justice, and understand how (...) the roles and trends in community health nursing in Israel may differ from developments in other countries. In‐depth interviews were performed with 55 Israeli health system professionals, and 692 nurse care‐givers were asked open‐ended questions. Interview answers were analyzed to find themes and trends. The study found that community nurse roles in Israel have expanded, especially for chronic disease control. Commonalities exist with countries such as the United States and the UK, albeit with important differences. However, continued conflicts with physicians exist, which can limit nurses' contributions to reducing health inequalities. Community nurses' importance is growing. Enabling them to overcome professional dominance and improve chronic disease control can help reduce health inequalities in Israel and elsewhere. (shrink)

Chronically ill conditions are particularly difficult to manage because of their impact both on the social and on the corporal sphere to such an extent as to involve a series of problems that negatively alter the quality of life of affected patients. Chronicity has also a considerable ef-fect on social capital. In the current literature, it is known that social capital may contribute to a range of advantages to people health. Chronic Venous Disease (CVD) includes several pathologi-cal alterations (...) of the venous system of the lower limbs that cause a wide range of symptoms and signs. The aim of this study is to explore, with a qualitative approach, the dynamics of social cap-ital within people's experience of CVD and describe the roles of family and friends and the health care system. The method used is based on face-to-face semistructured interviews was performed, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Six-teen patients were included: 11 women and 5 men. The results obtained are completely in line with the current literature, which shows a certain difficulty in terms of daily activities, pain management; work-related difficulties; non-coverage of healthcare costs for medications and drugs prescribed. In the context of social capital, the bonding social capital of the patients inter-viewed was more positively perceived in the role of CVD management than by the patients' fami-lies. Another interesting result concerns the total absence of knowledge of patient associations with CVD. Thus, alongside the biographical destruction that CVD entails, there is evidence of the scarce relevance and presence of health policies capable of improving the quality of life of these people not only from a social and medical point of view but also from an economic point of view. (shrink)

The world is experiencing a cataclysmically increasing burden from chronic illnesses. Chronic diseases are on the advance worldwide and treatment strategies to counter this development are dominated by symptom control and polypharmacy. Thus, chronic conditions are often considered irreversible, implying a slow progression of disease that can only be hampered but not stopped. The current plant-based movement is attempting to alter this way of thinking. Applying a nutrition-first approach, the ultimate goal is either disease remission (...) or reversal. Hereby, ethical questions arise as to whether physicians’ current understanding of chronic illness is outdated and morally reprehensible. In this case, physicians may need to recommend plant-based diets to every patient suffering from chronic conditions, while determining what other socioecological factors and environmental aspects play a role in the chronic disease process. This article provides insights to aspects of diet and chronic illness and discusses how the plant-based movement could redefine current understanding of chronic disease. The ethical justifications for recommending of a plant-based diet are analyzed. The article concludes that not advocating for plant-based nutrition is unethical and harms the planet and patients alike. (shrink)

This paper uses the survival strategies of food shelf clients to explore how food access, chronic disease, and spatial isolation shape the lives of low- and no- income urban citizens. The abundant availability of unhealthy food intersects with the presence of long-term health conditions to create a marginalized urban space where low quality commodity food is available, but exacerbates existing health conditions, is difficult to access, and does little to create food security. To survive, clients have normalized a (...) sustenance strategy of going to multiple food serving sites, carrying food long-distances and using SNAP benefits to make ends meet. However, this nourishment strategy is time-consuming and unsafe, demanding that people put themselves in precarious positions and push their bodies farther physically than is healthy. These food procurement strategies exacerbate their marginalization. Qualitative data from food shelf users is used to develop a theory of ambient struggling wherein the struggle for food access is unhealthy and time-consuming, making it difficult to improve their standard of living. (shrink)

Robert Truog describes the controversial randomized controlled trials (RCTs) of extracorporeal membrane oxygenation (ECMO) therapy in newborns. Because early results with ECMO indicated that it might be a great advance, saving many lives, Truog argues that ECMO should not have been tested using RCTs, but that a long-term, large-scale observational study of actual clinical practice should have been conducted instead. Central to Truog’s argument, however, is the idea that ECMO is an unusual case. Thus, it is an open question whether (...) Truog’s conclusions can be extended to other areas of medical research. In this paper, I look at epistemological and ethical issues arising in the care of patients with chronic diseases, using ECMO as a starting point. Both the similarities and the dissimilarities of these two cases highlight important issues in biomedical research and support a conclusion similar to Truog’s. Observational studies of clinical practice provide the best evidence to inform the treatment of patients with chronic disease. (shrink)

In the inter-war period physicians elaborated numerous ‘biotherapies’ grounded in the complex interactions between physiology, bacteriology and immunology. The elaboration of these non-specific biological treatments was stimulated by the theory of generalized anaphylaxis that linked the violent reaction to a foreign protein to a broad array of chronic diseases, from asthma and urticaria to rheumatism or chronic colitis. Such diseases were perceived as the result of an ‘abnormal reactivity’ to a sensitisation of tissues and organs by bacteria and (...) by foreign proteins, a view that provided an effective bridge between new concepts derived from bacteriology and immunology and the long-standing pathological tradition. Accordingly, physicians attempted to treat these conditions through specific desensitisation and non-specific biological therapies: peptone treatment, protein therapy, haemotherapy, ‘antivirus’ or ‘opotherapy’. Therapies that attempted to neutralise the harmful effects of chronic infections through ‘desensitisation’ were not seen as marginal medical practices, but were promoted by leading advocates of the ‘Pasteurian sciences’, such as Richet, Widal, Vallery-Radot, Wright and Fleming. They also led to development of new products by the pharmaceutical industry. (shrink)

ABSTRACT Patient self‐management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patient's preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patient's life. Four central ethical issues can be identified: 1) insufficient patient/family access to preparation that will optimize their competence to SM (...) without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled. (shrink)

The new Coronavirus has been declared a global pandemic by the World Health Organization. The sudden outbreak of this new virus and the measure of lockdown adopted to contain the epidemic have profoundly changed the lifestyles of the Italian population, with an impact on people’s quality of life and on their social relationships. In particular, due to forced and prolonged cohabitation, couples may be subject to specific stressors during the epidemic. In addition, living with a chronic health condition may (...) add specific challenges to the ones posed by the epidemic itself. The present cross-sectional study aimed to provide a picture of the challenges as well as the resources for both individual and relational well-being of Italian individuals in a couple relationship, with a specific attention to the comparison between individuals living with and without a chronic disease. Results showed that people with a chronic disease had lower psychological well-being and more fears and worries about the COVID-19. People with a chronic disease perceived fewer resources than healthy people. Moreover, the challenges are shown to be associated with less psychological well-being and high pessimism about the future. Instead individual, relational, and social resources play a protective role during the pandemic for both healthy and chronically ill people. (shrink)

Living things are often plastic during their early development and are moulded by the environment. Many human fetuses have to adapt to a limited supply of nutrients, and in doing so they permanently change their physiology and metabolism. These programmed changes may be the origins of a number of diseases in later life, including coronary heart disease, stroke, diabetes and hypertension.

Ageing populations and rising rates of chronic disease globally have shifted key elements of disease management to ideas of integrated care and self‐management. The associated policies and programmes often focus on intervention and support beyond the sites of the hospital and clinic. These shifts have significantly impacted the delivery and practice of nursing for both nurses and the clients with whom they work. This article argues that Foucault's comments on space, place and heterotopia (1986) are useful in (...) exploring these changes from a philosophical perspective, to draw out the complexity of these programmes and add texture to discussions on the ways these shifts to localisation and the dominant discourses of self‐management and responsibility have reconfigured nursing practices. The theoretical discussion is augmented with illustrations from an Australian integrated health care programme. (shrink)

Attention has become increasingly focused in recent years on the role agri-food system transformations have played in driving the global diet-related chronic disease burden. Identifying the role played by the food-consuming industries (predominantly large manufacturers, processors, distributors, and retailers) in particular, and identifying possibilities to facilitate healthier diets through intervening in these industries, have been identified as a research priority. This paper explores the potential for one promising analytic framework—the nutrition-oriented value chain approach—to contribute to this area, drawing (...) on recent insights from the global value chain (GVC) literature to develop an institutionally-enriched approach. The research focused on a canned deciduous fruit value chain linking growers, processors, and retailers in South Africa and Australia. Findings reveal the multiple drivers which have converged to shape this value chain over time, and the key actors which are influencing product availability, composition, price, and promotion within this sector. With its emphasis on identifying implications for end-consumption, rather than economic outcomes within the chain, nutrition-oriented value chain research represents a significant shift in focus for the GVC framework. Therefore, an immediate opportunity for further research is to extend the analytic framework to primary research on end-consumption behaviours. (shrink)

In this article I consider the role of passing and performance in the everyday lives of alkaptonuria and vitiligo patients. Race, LGBTQ, gender and disability scholars have long used the term passing to describe sub-groups of people within marginal populations who intentionally manipulate their bodies or alter their behaviour in order to claim identities that are not socially assigned to them at birth. In this paper I demonstrate the effectiveness of the passing strategies that patients use in order to mitigate (...) their disease symptoms and render them invisible, thus enabling them to pass as “healthy” or unaffected by their condition. I further consider how patients who choose not to pass utilise resistance strategies in order to generate awareness of their disease and encourage funding for it. I conclude by assessing the effectiveness of these strategies in determining whether or not patients can pass, and the ways in which this is aided or hindered by their social and economic status. (shrink)

In this paper I will briefly discuss flourishing and freedom, relating them to health and disease; discuss the tensions between flourishing and freedom; and exemplify how those discussions are relevant to chronic disease suffering. The concept of freedom has significant connections with the concepts of health, disability and disease. Understanding disease and disability in terms of the loss of aspects of freedom may help our understanding of the suffering that arises from chronic disease. (...) On the other hand, flourishing may require a degree of adversity. Therefore disability and disease may be conducive to flourishing. Flourishing may be understood as subordinated to freedom, as a path to freedom, or as transcending freedom. It is suggested that freedom and flourishing are expressed as mutually enhancing cycles, actualized according to the personal circumstances that will ground their expression. In a distant horizon of innocent spontaneous self-expression, flourishing and freedom may become coincident. Regarding chronic disease as a constraint on ‘species-typical’ abilities to fulfill one’s significant life interests, as well as an unwanted intrusion into the patient’s life, presents chronic disease suffering as a loss of both positive and negative freedom. The conceptual relation between flourishing and freedom will thus organise the possibilities the sufferer sees as open to their self. (shrink)

This article describes compassion as perceived within the relationship between nurses and older persons with a chronic disease. The aim of the study is to understand the benefit of compassion for nursing practice within the context of long-term care. The design of the study involves a qualitative analysis of in-depth interviews with nurses and patients in three different care-settings. Results show the nature of compassion in seven dimensions: attentiveness, listening, confronting, involvement, helping, presence and understanding. Analysis of the (...) data also shows in what way opinions of participants relate to issues raised in a previous literature study, for example the difference between pity and compassion. The conclusion states that compassion is a valuable process which motivates patients as well as nurses to cooperate in achieving relevant outcomes of care. The discussion involves some methodological issues. For one thing, further confirmation of the dimensions found is recommended. (shrink)

The concept of professional autonomy has figured prominently in literature that addresses nursing's project of professionalization. Nursing's capacity to determine the nature and scope of its practice is related in important ways to the location of practice. Within highly structured environments such as acute‐care hospitals, nurses' professional autonomy has frequently been contested yet is often implicated by nursing's elite as a necessary condition in the construction of quality work environments. Professional concerns and management practices related to retaining experienced nurses to (...) support sustainability in healthcare delivery systems' impact on the ability of nurses to practice autonomously. Our paper focuses on the emerging field of practice of chronic disease management. We describe the complex relationships negotiated by a nurse in a theoretically autonomous practice setting as she seeks to fulfil both the requirements of a research protocol designed by physician experts representing the specialty of renal medicine, and her professional obligations to respond to the expressed needs of patients with early‐stage renal disease. We utilize a case study approach to explore particular contemporary concerns that nurses in practice confront as they attempt to accomplish professional relationships with patients central to achieving prescribed medical outcomes where nursing practice, as an element of the achievement of those outcomes, is constituted as absent or unacknowledged by the medical researchers leading the project. Implications for nursing's discourses on the professional project of autonomy will be discussed. (shrink)

Family Medicine Groups (FMGs) are the most recently developed primary care organizations in Quebec (Canada). Nurses within FMGs play a central role for patients with chronic diseases (CD). However, this complex role and the nursing activities related to this role vary across FMGs. Inadequate knowledge of nursing activities limits the implementation of exemplary nursing practices. This study aimed to describe FMG nursing activities with patients with CD and to describe the facilitators and barriers to these activities. A multiple‐case study (...) was performed with ten nurses practicing among patients with CD in FMGs. Five data sources were used to provide an in‐depth description of nursing activities and the facilitators and barriers to the development of these activities. After qualitative data analysis, findings show that nursing activities are clustered into five domains: Global assessment of the patient, Care management, Health promotion, Nurse–physician collaboration, and Planning services for patients with CD. Activities vary depending on contextual factors identified in each case. This multiple‐case study provides a clear description of nursing activities with patients with CD. There is a need for improved nursing activities and expertise in domains of activities that are less present in FMGs, such as case management and interprofessional collaboration. (shrink)

Socioeconomic status -related health disparities persist for numerous chronic diseases, with lower-SES individuals exhibiting greater risk of morbidity and mortality compared to their higher-SES counterparts. One likely contributor is disparities in health messaging efforts, which are currently less effective for motivating health behavior change among those lower in SES. Drawing on communication neuroscience and social neuroscience research, we describe a conceptual framework to improve health messaging effectiveness in lower SES communities. The framework is based on evidence that health-message-induced activity (...) in the ventral striatum and subdivisions of the medial pre-frontal cortex predicts behavior change. Additionally, we draw from social neuroscience work showing that activity in these regions during valuation and the processing of self-related vs. social information, differs as a function of SES. Bringing together these previously disparate lines of work, we argue that health messages emphasizing the benefits to close others of engaging in behavior change will be more effective among lower SES individuals. We also outline a research agenda based on our framework. Ultimately, we hope that this framework utilizing a “brain-as-predictor” approach generates novel insights about the neural underpinnings of message-induced behavior change among lower SES individuals, and helps to close the gap in SES-based health disparities by harnessing the power of neuroimaging. (shrink)