Direct-to-consumer advertising of healthcare products refers to a variety of marketing practices based on a combination of information and promotion strategies directed at consumers through different media such as radio and television broadcasts, newspaper and magazine ads, and, more recently, through the Internet. The principal form of marketing used by the pharmaceutical industry is the distribution of free samples to physicians but DTCA is an increasing part of global promotional spending for prescription drugs. Latest estimates suggest that DTCA now represents (...) an annual $3.2 billion enterprise for the U.S. pharmaceutical industry. Findings from the literature show that these substantial efforts are geared toward the newer pharmaceuticals for chronic conditions with huge market potentials. The lion's share is going to the 20 most prescribed pharmaceuticals. (shrink)

ABSTRACT Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex (...) in such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance. (shrink)

This article studies the phenomenology of chronic illness in light of phenomenology’s insights into ecstatic temporality and freedom. It shows how a chronic illness can, in lived experience, manifest itself as a disturbance of our usual relation to ecstatic temporality and thence as a disturbance of freedom. This suggests that ecstatic temporality is related to another sort of time—“provisional time”—that is in turn rooted in the body. The article draws on Merleau-Ponty’s Phenomenology of Perception and Heidegger’s Being and (...) Time , shedding light on the latter’s concept of ecstatic temporality. It also discusses implications for self-management of chronic illness, especially in children. (shrink)

Embodied knowledge in chronic illness and injury When people experience chronic illness or serious injury, changes occur not just within their physical bodies but also in their embodiments, that is, how they view the world through their bodies. For such patients, dualistic (mind–body) notions of the body as object and the mind as subject can devalue experiences that are necessary for healing and for managing everyday problems related to their illness or injury. Nurses need to be able (...) to guide people with illness or injury to new levels of wellness, but may lack appropriate theoretical conceptualizations. Philosophies that underlie embodied knowledge — in particular, philosophies of Merleau‐Ponty and Polanyi — were explored yielding two new ways to understand the body. The body as ‘silent partner’ fosters an appreciation of the body's own subjectivity that can be enhanced in nursing care through sensitivity, listening, and creative coaching. Nurses can assist their patients to identify new and positive understandings of what their bodies mean to them after bodily changes. The body as ‘informant’ holds much promise for solving some of the everyday problems that people with chronic illness or injury experience. By using phenomenological and other naturalistic methods, researchers and patients can find clues to solving such problems, clues that are known through daily living but hidden beneath conscious awareness. As a result, some of the practical know‐how of the body as ‘informant’ can be transformed into testable nursing interventions. (shrink)

Some theorists have argued that we should understand the notion of free will from a functional perspective: free will just is our ability to choose effectively and adaptively in an ever-changing environment. Although far from what many philosophers normally mean by free will, those who adopt this biological-evolutionary perspective can clearly define and defend a notion of personal responsibility. One consequenceof this point of view is that addicts become responsible for their actions, for at each choice point, there is a (...) real sense in which the addict could have elected not to use or abuse. As a result, it has been argued that addiction is not a disease, that addictive behavior is voluntary, and that sometimes it is even rational. This paper defends a different way of thinking about addiction, one that aligns it with other complex chronic illnesses. The perspective put forth here suggests that these discussions about responsibility and free will represent an over-simplified and neuropsychologically inaccurate portrait of basic human capacities for behavioral choice. (shrink)

The following article is a response to the position paper of the Hastings Center, “Ethical Challenges of Chronic Illness”, a product of their three year project on Ethics and Chronic Care. The authors of this paper, three prominent bioethicists, Daniel Callahan, Arthur Caplan, and Bruce Jennings, argue that there should be a different ethic for acute and chronic care. In pressing this distinction they provide philosophical grounds for limiting medical care for the elderly and chronically ill. We give a (...) critical survey of their position and reject it as well as any attempt to characterize the physician-patient relationship as a commercial contract. We emphasize, as central features of good medical practice, a commitment to be the patient's agent and a determination to acquire and be guided by knowledge. These commitments may sometimes conflict with efforts to have the physician serve as an instrument of social and economic policies limiting medical care. (shrink)

The following article is a response to the position paper of the Hastings Center, "Ethical Challenges of Chronic Illness", a product of their three year project on Ethics and Chronic Care. The authors of this paper, three prominent bioethicists, Daniel Callahan, Arthur Caplan, and Bruce Jennings, argue that there should be a different ethic for acute and chronic care. In pressing this distinction they provide philosophical grounds for limiting medical care for the elderly and chronically ill. We give a (...) critical survey of their position and reject it as well as any attempt to characterize the physician-patient relationship as a commercial contract. We emphasize, as central features of good medical practice, a commitment to be the patient's agent and a determination to acquire and be guided by knowledge. These commitments may sometimes conflict with efforts to have the physician serve as an instrument of social and economic policies limiting medical care. Keywords: acute, agent, autonomy, chronic, knowledge, obligations, rights CiteULike Connotea Del.icio.us What's this? (shrink)

Chronic illness is a major cause of disability, especially in women. Therefore, any adequate feminist understanding of disability must encompass chronic illnesses. I argue that there are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability and feminist politics, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and “cure” of disabilities.

: Chronic illness is a major cause of disability, especially in women. Therefore, any adequate feminist understanding of disability must encompass chronic illnesses. I argue that there are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability and feminist politics, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and "cure" of disabilities.

The article explores the complex roles shame plays in the lives of people with one or more chronic conditions. This is achieved through a participatory research process in which people with chronic conditions were invited to share stories of shame on the public social media profiles of a peer-led patient community called ‘Chronic Influencers’. The crowdsourced material shows that 7 out of 10 experience shame in relation to their illness on a daily or weekly basis. Other findings are that (...) shame seems to stick to ‘energetic failures’ of the slow or tired body in various social situations; shame is predominantly produced or anticipated in the intimate sphere; and shame can be ‘rescripted’ as culturally produced and politically contestable – and thus counter the pressure to individualise health as a project of personal improvement and self-inspection – when it is shared through voluntary storytelling among peers on social media. (shrink)

To address the growing costs associated with chronic illness care, many countries, both developed and developing, identify increased patient self‐management or self‐care as a focus of healthcare reform. Health coaching, an implementation strategy to support the shift to self‐management, encourages patients to make lifestyle changes to improve the management of chronic illness. This practice differs from traditional models of health education because of the interactional dynamics between nurse and patient, and an orientation to care that ostensibly centres and (...) empowers patients. The theoretical underpinnings of coaching reflect these differences, however in its application, the practices arranged around health coaching for chronic illness self‐management reveal the social regulation and professional management of everyday life. This becomes especially problematic in contexts defined by economic constraint and government withdrawal from activities related to the ‘care’ of citizens. In this paper, we trace the development of health coaching as part of nursing practice and consider the implications of this practice as an emerging element of chronic illness self‐management. Our purpose is to highlight health coaching as an approach intended to support patients with chronic illness and at the same time, problematize the tensions contained in (and by) this practice. (shrink)

Recent research shows that 20% of children face a form of chronic illness during childhood. The illness and its associated physical and mental challenges can affect such children's ‘being’ and influence how they develop as people. A significant aspect of a child's life that can be profoundly influenced by a chronic illness is education. This study employed a phenomenological approach to shed more light on the special education of such children. Temporality and embodiment were examined as two (...) philosophical bases in the phenomenological education of children with such chronic illnesses. Also, this educational model highlights that phenomenological understanding, and the healing connection in education, can increase the affected children's positive self-concept, directing them towards a satisfying and happy life. (shrink)

In this paper I focus on the topic of chronic illness in the context of quality of life. I offer a conceptual explanation of these notions and then try to systematise the various species of suffering connected with chronic illness. Suffering in illness rarely attracts systematic analysis. Part of the reason for this is that the topic is in a way an aspect of common sense. It has an air of self-evidence and seems not to require analysis. (...) However, it is my contention that the nature of human suffering is not at all selfevident. In many ways we know very little about the content and extent of suffering. And, although it may not be sensible to borrow traditional scientific techniques for the study of suffering, we need as much intellectual penetration and rigorous analysis in order to clarify the nature of suffering as for any other scientific investigation. Moreover, there are good reasons for saying that we ought to direct much more of our attention to this humanistic aspect of medicine. We ought to remember that the existence of suffering is one of the main motives, if indeed not the most important motive, for undertaking the medical enterprise. (shrink)

With an increasing number of individuals living with chronic illness and pain, integrative approaches offering self-management support are needed. This book proposes a multi-layered framework integrating the body/self/environment that cultivates wholeness as an authentic embodied presence in alignment with a reflexive self.

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief. I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study. I then use this analysis to highlight some clinical challenges that arise should this claim (...) receive uptake in clinical practice. Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated. I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve. (shrink)

Nearly $2 trillion is spent annually in the U.S. treating chronic illness — yet accessibility to quality health care services in rural communities for the chronically ill and dying remains problematic. Unique barriers present special challenges to a meaningful discussion of and subsequent strategies for addressing these issues in the context of increasingly scarce resources.

Healthcare ethics has to date had very little to say about the treatment of chronic illness. That is problematic. Chronic illness differs from other illnesses in that: 1. in most cases it cannot be cured; 2. patients can live with it for many years; and 3. its day to day management is typically carried out, not by healthcare professionals, but by the patient and/or members of their family. These features problematise key distinctions that underlie much existing work in (...) healthcare ethics — including those between beneficence and autonomy, between treatment and prevention, and between the recipient and provider of treatment. They also raise ethical questions that have not to date been addressed in any detail — including what healthcare professionals should do when patients are managing their illness poorly, or when changes occur that affect their patients. For these reasons chronic illness provides a lens through which to challenge the adequacy of existing approaches to healthcare ethics, exposing the gaps and false assumptions built into them. In doing so it also provides the materials to build a more philosophically adequate account of healthcare professionals’ moral obligations than exists to date. Providing such an account is the aim of this monograph. (shrink)

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients (...) presenting with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making. (shrink)

The Institute of Medicine reporting on the quality of health care in America recommends six aims for achieving the health care system we could have. Together with the Institute for Healthcare Improvement Triple Aim initiative, a framework has emerged to challenge providers, educators, and policymakers to remake the health care system according to specific objectives: to provide care that is safe, effective, patient-centered, timely, efficient, and equitable to more people at a price we can afford. Complicating this mission of better (...) prevention and better care at a lower cost is a daunting demographic: January of 2011 marked the month and year that the first of the baby boomers turned 65. The U.S. Census Bureau in May 2010 projected the number of Americans of this age and over to reach 88 million by 2050, more than double the current figure of 40.2 million. Parekh and Barton forecast in stark detail what it will be like to address these burgeoning numbers of older Americans with comorbidities, including the fact that over 20% of the population currently experiences at least two chronic medical conditions. (shrink)

Bioethical principles and theories rest on fundamental philosophic conceptions of the human self that usually go unexamined. Reconsideration of our philosophic understanding of a human self requires that health practitioners broaden their ethical concern for patients decidedly beyond respect for decision‐making autonomy and gaining informed consent for medical procedures.

A growing epidemic of chronic illness in working populations contributes to a negative spiral of work and organizational outcomes including increased absenteeism, prolonged disability or illness claims, early work termination, and non-voluntary unemployment. Chronic illness, characterized by fluctuating trends in clinical and embodied experience along a prolonged time course, is intersubjectively experienced within a social context, and variably responded to and managed within and between organizations and countries. Drawing from global health, we discuss chronic illness experience (...) and organizations as context for chronic illness experience. We then propose a model of ‘organizational caregiving,’ highlighting how invested relational understanding, attitude, intent, and acts of care can enrich the work and organizational experiences of employees with chronic illness. (shrink)

Self‐trust is essential to the well‐being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self‐trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self‐advocacy. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we (...) pay particular attention to the role that allies such as clinical professionals play in the development of self‐trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self‐trust paradigm with that of self‐management, which tends to replace the former's attention to patients’ experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self‐trust in health care settings and on creative research in this critical yet heretofore underrepresented domain. (shrink)

Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the (...) text. Ricoeur's ‘Hermeneutical function of distanciation’ will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular kind of mediation in the interpretation. That narration represents an interpreted understanding of the whole, which facilitates an appropriate and evocative presentation of the interpreted data. This way of objectifying the text through narration can contribute yet another perspective to Ricoeur's rich and varied theory of interpretation. (shrink)

Self‐management is often presented as a panacea for chronic disease care. It plays an important role at the policy level and increasingly guides the delivery of health care services. Self‐management approaches to care are founded on traditional individualistic views of autonomy in which the patient is understood as being independent, rational, self‐interested, and self‐governing. This conceptualization of autonomy has been challenged, particularly by feminist scholars. In this paper I review predominant critiques of self‐management and the traditional individualistic view of autonomy. (...) I propose that a relational approach to autonomy, which is premised on social embeddedness and attends to social, political, and material conditions, is a more sound conception of autonomy capable of taking into consideration the complexities of illness experiences. I suggest that integrating a relational perspective of autonomy into self‐management will be valuable in guiding its progression and elaborate ways in which self‐management research and practice could benefit from incorporating a relational approach to autonomy. (shrink)

Parsons’ sick role concept has become problematic in the face of the increased significance of chronic illnesses and the growing emphasis on lifestylecentred health promotion. Both developments de-limit the medical system so that it extends into the world of health, fundamentally changing the doctor-patient relationship. But as the sick role is firmly based on the reciprocities of a resiliently capitalist achievement society it still informs normative expectations in the field of health and illness. The precarious social position of chronic (...) patients between being governed by and being consumers of medicine, I will argue, can only be adequately understood if one involves, as Parsons did, the moral economy surrounding health and illness. (shrink)

Utilization of resources in coping with chronic illness Research conducted to date has evidenced the importance of single resources for adaptation to illness. The aim of the presented study was to take into account many resources so as to determine their structure and the way of utilization in various patient groups. The Resourcefulness for Recovery Inventory measuring 18 personal and social resources was used for this purpose. Participants in the study were 115 patients suffering from cardiovascular or rheumatoid (...) diseases, or from cancer. The patients were found to utilize cognitive, emotional and behavioral resources, as well as social support in their adaptation to illness. The highest level of resource utilization was found in the cardiac group, and the lowest - in cancer patients. (shrink)

Book reviewed in this article: Good Days, Bad Days: The Self in Chronic Illness and Time. By Kathy Charmaz.

The aim of this paper is to familiarize the reader with the concept of psychological energy, and the role it plays in deepening our understanding of psychosocial adaptation to traumatic life events and, more pointedly, the onset of chronic illness and disability. In order to implement this aim, the following steps were undertaken: First, a brief historical review of the nature of energy, force and action, as traditionally conceived in the field of physics, is provided. Second, an overview of (...) PE is presented, with a shared emphasis on both its historical underpinnings and its present conceptualizations in the fields of social, health and rehabilitation psychology. Particular emphasis is placed upon applications of PE in the domains of adaptation to stress, trauma and CID onset. Third, reviewed are measuring instruments that have been traditionally applied to the assessment of the nature, content and magnitude of PE and its dynamics. Finally, new perspectives are offered on the dimensional structure, processes and dynamics, assumed to undergird PE, its underlying conceptual similarities to physical energy, and its potential and deeper link to the process of psychosocial adaptation in the aftermath of experiencing trauma and CID. (shrink)

ObjectivesQuality of Life depends on the discrepancy between desired and current experiences, thus in chronic illness, adjustment of expectations and interpretation of the current situation are crucial. Depression is known to influence this gap, and the present study aims to further assess the role of resilience and health locus of control.MethodsA total of 94 patients with neurological disorders were screened via telephone regarding depression, resilience and HLC. Current and desired state of several life domains were assessed, such as Fitness, (...) General Health, Pain, Daily Activities, Finances, Leisure, and Family. Elastic net regularization and analyses of variance were used to disentangle the impact of depression, resilience, HLC, and sociodemographic factors on the perception of current and desired state, and the gap between both.ResultsA gap was present for all domains but largest for pain. Interpretation of the current state was linked to desired state, HLC, and age. All gaps were related to depression; certain domains were in addition influenced by resilience, HLC and sociodemographic factors. Of note, for most domains, patients did not select the highest possible desired state.ConclusionOlder patients with neurological disorders report a gap between current and desired state for many aspects of life. Adjusting expectations is beneficial in the face of declining health, but a reasonably increased desired state may positively influence the perception of the current situation. Depression negatively influences the interpretation of the Calman gap. (shrink)

We are living through a demographic transition from a world in which there were lots of young people and very few older adults to one in which the numbers in these age groups are becoming more evenly balanced. One reason for this is that more of us are living into our seventies, eighties, nineties, and beyond. That is the good news. Unfortunately, the chance of developing chronic illnesses (including diabetes, arthritis, and dementia) is typically higher for people in these older (...) age groups than for those who are younger. Because we do not know how to cure these illnesses, many of us will spend at least some of this extra time with one or more chronic illness. While we are more likely than in the past to live into older age, we are likely to be living with illness when we get there. That raises a challenge: how should we respond to this change? (shrink)

This study explored the evidence of validity of internal structure of the 12-item Functional Assessment of Chronic Illness Therapy—Spiritual Wellbeing Scale in Brazilian adolescents with chronic health conditions. The study involved 301 Brazilian adolescents with cancer, type 1 diabetes mellitus, or cystic fibrosis. Exploratory Factor Analysis, Confirmatory Factor Analysis, and Item Response Theory were used to test the internal structure. Reliability was determined with Cronbach’s Alpha and McDonald’s Omega. The EFA suggested a one-dimensional scale structure in contrast to the (...) original 2-factor model or the 3-factor model which were not reproduced in the current CFA. All quality indicators for the EFA one-factor exceeded the required criteria. The FACIT-Sp-12 for adolescents yielded strong evidence for a 1-factor model and with good reliability. (shrink)

Through her stories and mine, my sister and I allow the outside world to see the ways in which we grapple with a critical health incident along her journey of living with lupus. Lupus is a chronic, autoimmune disease that is difficult to recognize and to diagnose. The ambiguous nature of the disease creates considerable confusion for the ill person as well as her support system. Using an illness narrative, I analyze a real life event linked to chronic (...) class='Hi'>illness, invisibility, living loss, liminality and family—and more specifically, to social support within the sibling relationship. (shrink)

While nearly all patients with a chronic disease must self-manage their condition to some extent, preparation for these responsibilities is infrequently assured in the USA. The result can be significant harm and the undermining of a patient’s ability to take advantage of life opportunities and be productive. Agreeing to care for a patient involves a moral responsibility to see that she or he receives the essential elements of care, including the ability to manage the disease on a daily basis. The (...) research base for the efficacy of self-management and for how patients can be prepared to assume it is sufficiently strong that health care professionals must advocate for its inclusion in the routine evidence-based care of individuals with chronic disease. Because patient education is central to nursing’s philosophy and practice, the profession should play a major role in removing structural barriers to self-management preparation and assuring its provision to a high standard of quality. (shrink)