This article analyses the work of the twentieth-century late modernist Samuel Beckett, in light of the turn-of-the-century anti-rationalist Henri Bergson and the eighteenth-century neoclassicist Samuel Johnson. What unites these three very different thinkers is a concern over habitual, automatic and involuntary behavior, which in all three cases has a distinctly neurological dimension. Beckett’s writing explores the Bergsonian notion, informed by medicine and experimental psychology, of the limitations of agency, of “the deep-seated recalcitrance of matter,” and of the human as always (...) already inflicted by the mechanical, a fact that is poignantly highlighted by the case of Samuel Johnson. Through his encounter with Johnson, Beckett registers a paradigm shift in the understanding of subjectivity. Whereas Bergson aims, throughout his career, to contest the mechanical, habitual and automatic that threaten to encrust themselves upon the living, in Beckett’s often uncannily Johnsonian writing, the habitual and the automatic become progressively more central, until in the late works, habit and mechanical behavior constitute a tenuous, fraught and primitive ontology, the residues of an agential self. (shrink)

Variability in the symptom experience in patients diagnosed with chronic conditions may be related to social determinants of health (SDoH). The purpose of this critical review was to (1) summarize the existing literature on SDoH and symptom clusters (i.e., multiple, co‐occurring symptoms) in patients diagnosed with common chronic conditions, (2) evaluate current variables and measures used to represent SDoH, (3) identify gaps in the evidence base, and (4) provide recommendations for the incorporation of SDoH into future (...) symptom cluster research. We identified 118 articles including information on SDoH in chronic condition symptom cluster research. Articles primarily focused on cancer populations. Few articles had the explicit purpose of investigating relationships between SDoH and symptom clusters, and the inclusion of SDoH was often limited to variables used to describe samples. Future studies should be designed to “move beyond Table 1” in their utilization of SDoH as variables and examine relationships between SDoH and symptom clusters. Attention should be paid to the appropriateness of measures being used to collect information on SDoH, and analysis methods that estimate causal connections between variables should be considered. Research regarding the relationship of SDoH with symptom clusters in patients with chronic conditions has the potential to reveal mechanisms of symptom disparities and guide changes to alleviate these disparities. (shrink)

An increasing number of people worldwide are living with chronic conditions that have an aspect of bodily fragility as part of the condition or as an effect of treatment. In this article, I explore the temporal experience of bodily fragility and the particularities of consciousness states among people with the chronic condition osteogenesis imperfecta (OI) in Denmark. My aim is threefold. First, my goal is to give an insight into life with OI, a rare and rarely studied (...) condition. Second, I shed light on bodily fragility, a theme that lives in the shadows of other analytical foci in anthropology. Third, I will contribute to the anthropological understanding of the connection among body, physical environment, and consciousness. I argue that the lifeworlds of people with OI are haunted by mental and bodily memories and fearful future scenarios, which makes the past and the future collapse into the present. (shrink)

Prevention and control of chronic conditions are global healthcare challenges. Patient self-management has been deemed essential for treating chronic conditions and improving the quality of patient life. However, the current Japanese system for supporting patient self-management of chronic conditions has received little ethical assessment. The first aim of this article is to provide an ethical analysis of current Japanese support for self-management of chronic conditions with reference to international discussions concerning self-management, developed (...) mainly in western societies such as Europe, the United States. The second aim is to clarify the challenges faced by Japanese biomedical ethics concerning selfmanagement support by focusing on the ethical concepts of quality of life and autonomy. This article identifies the following two challenges: [1] dispelling conceptual confusion concerning basic ethical concepts such as quality of life and autonomy, and [2] exploring the conceptual relationship between these ethical concepts, as they relate to providing support for chronically ill patients. By addressing these challenges and constructing a theoretical basis for radical change in support mechanisms, bioethics in Japan could contribute to efforts to construct a comprehensive support system for patients with chronic conditions, which organize variety kinds of supports, such as medical professional supports, supports from patient’s groups, local community supports, familial supports, support in patients’ workplace, and supports for patients’ family members as well. (shrink)

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with (...) chronic care. The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical (...) setting remain understudied. However, the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S24-S29, March‐April 2022.

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions to the virtual exclusion of the capacity to execute the treatment plan. However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic care. The (...) purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

Self‐management programmes provide strategies to optimise health while educating and providing resources for living with enduring illnesses. The current paper describes the development of a community‐based programme that combines a transdiagnostic approach to self‐management with mindfulness to enhance psychological coping for older people with long‐term multimorbidity. The six steps of intervention mapping (IM) were used to develop the programme. From a needs assessment, the objectives of the programme were formulated; the theoretical underpinnings then aligned to the objectives, which informed programme (...) design, decisions on implementation, programme adoption and evaluation steps. Bandura's social cognitive theory informed the methods and practical strategies of delivery. Among the features addressed with participants are transdiagnostic dimensions such as fatigue, pain, breathlessness, sleep disturbances. The programme utilises mindfulness to aid coping and ameliorate the psychological distresses associated with chronicity. Findings from an initial feasibility study and subsequent pilot assisted in conceptualising our programme. In conclusion, applying IM gave the planners confidence the programme is robust and evidence‐based with clearly articulated links between the behavioural goals and design elements to obtain the desired outcomes. (shrink)

: Many adolescent patients with chronic medical conditions do not manage their illnesses very closely and often put themselves at risk for serious health complications. Setting aside cases of nonadherence that are due to practical difficulties involving the implementation of a management plan, a deeply problematic question remains. How should health care providers respond to adolescent patients who express a conscious and value-driven decision to pursue other goals and interests that are incompatible with their doctors' recommended directives? Using (...) two guiding ethical principles, the "relevant difference principle" and the "principle of noninterference," as well as available empirical data on adolescent decision making and risk perception, the paper concludes that most adolescents ages 14 and older should be allowed to make self-determining decisions regarding the management of their chronic medical conditions. (shrink)

Living with a chronic condition represents a strenuous experience that often could be lived as a sequence of waiting and crisis times. Therapeutic path incidents could represent however a catalysts and revelatory time, useful to patients to discover their own resources. A qualitative study according to the phenomenological hermeneutic perspective was conducted to understand the kind of skills expressed by the patients during a difficult episode, and the characteristics that identify patients who can overcome them better. From September 2019 (...) to August 2020 twenty-three patients followed-up in four Hospital Units of Northeastern of Italy were enrolled. All the patients described an episode linked whit their pathological condition; they mentioned mainly supportive, reactive, or behavioral strategies and an acceptance attitude. The sample characteristics may explain the recurring acceptance attitude; however, the younger individuals, those with a higher level of education and those who faced precedent negative life experiences seem to better overcome challenging events. It can’t be taken for granted that patients possess all the skills necessary to overcome the frequent challenging episodes they have to face; for this reason, healthcare professionals should assess their learning and reactive attitude in order to tailor for them therapeutic education paths. (shrink)

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)

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)

Chronic pain patients often miss receiving acknowledgement for the multidimensional struggles they face with their specific conditions. People suffering from chronic pain experience a type ofinvisibilitythat is also borne by other chronically ill people and their respective medical conditions. However, chronic pain patients face both passive and active exclusion from social participation in activities like family interactions or workplace inclusion. Although such aspects are discussed in the debates lead by the bio-psycho-social model of pain, there (...) seems to be a lack of a distinct interest in assessing more specifically the social aspects regarding chronic pain. As a result, the social aspects have yet to be taken into a more thorough theoretical consideration of chronic pain and to be practically implemented to help affected patients. By addressing chronic pain patients’ struggle for recognition, this paper attempts to shed light on some of these social aspects. We base this attempt on a theoretical framework that combines patients’ statements with an adaptation of Axel Honneth’s social-philosophical work onrecognition. Thus, this paper tries to make a suggestion on how the bio-psycho-social model of pain can live up to its name by helping to address more adequately some of the more neglected aspects in chronic pain patients’ suffering than has been possible to date. (shrink)

Chronic pain affects a large part of the population causing functional disability, being often associated with coexisting psychological disorders, such as depression and anxiety, besides cognitive deficits, and sleep disturbance. The world elderly population has been growing over the last decades and the negative consequences of chronic pain for these individuals represent a current clinical challenge. The main painful complaints in the elderly are related to neurodegenerative and musculoskeletal conditions, peripheral vascular diseases, arthritis, and osteoarthritis, contributing toward (...) poorly life quality, social isolation, impaired physical activity, and dependence to carry out daily activities. Organ dysfunction and other existing diseases can significantly affect the perception and responses to chronic pain in this group. It has been proposed that elderly people have an altered pain experience, with changes in pain processing mechanisms, which might be associated with the degeneration of circuits that modulate the descending inhibitory pathways of pain. Aging has also been linked to an increase in the pain threshold, a decline of painful sensations, and a decrease in pain tolerance. Still, elderly patients with chronic pain show an increased risk for dementia and cognitive impairment. The present review article is aimed to provide the state-of-art of pre-clinical and clinical research about chronic pain in elderly, emphasizing the altered mechanisms, comorbidities, challenges, and potential therapeutic alternatives. (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)

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)

Chronic pain is one of the most disabling conditions globally, yet we are still missing a satisfying theoretical framework to guide research and clinical practice. This is highly relevant as research and practice are not taking place in a vacuum but are always shaped by a particular philosophy of pain, that is, a set of implicitly or explicitly prevailing assumptions about what chronic pain is and how it is to be addressed. In looking at recent history, we (...) identify a promising trend from neuro-centrism to the application of the biopsychosocial model. Unfortunately, due to its limited theoretical foundation, the biopsychosocial model is too often implemented in a reductionist, fragmented, and linear manner. In particular, it remains too vague concerning the relationship between involved biological, psychological, and social processes. Sanneke de Haan prominently labeled this the integration problem. In this paper, we introduce five different facets of the integration problem that every philosophy of pain needs to address: (i) ontological, (ii) conceptual, (iii) explanatory, (iv) methodologicalMethodological, and (v) therapeutic. We develop an enactive theory of chronic pain and outline how far it provides solutions to these different integration challenges. (shrink)

While some philosophers believe disabilities constitute a “bad-difference,” others think they constitute a “mere-difference” (Barnes 2016). On this latter view, while disabilities may create certain hardships, having a disability is not bad in itself. I argue that chronic pain problematizes this disability-neutral view. In doing so, I first survey the literature on chronic pain (§1). Then, I argue that Barnes’s mere-difference view cannot adequately accommodate the lived experiences of many people who suffer from chronic pain (§2). Next, (...) I consider two ways Barnes might respond and I explain why these responses are not workable (§3). Finally, I conclude with a brief discussion of disability variantism, the view that just as some disabilities can be neutral or even positive for some individuals, other disabilities like chronic pain can understandably make some people’s lives miserable not because society has failed them but simply because some conditions can openly conflict with well-being (§4). (shrink)

Marc Lewis argues that addiction is not a disease, it is instead a dysfunctional outcome of what plastic brains ordinarily do, given the adaptive processes of learning and development within environments where people are seeking happiness, or relief, or escape. They come to obsessively desire substances or activities that they believe will deliver happiness and so on, but this comes to corrupt the normal process of development when it escalates beyond a point of functionality. Such ‘deep learning’ emerges from consumptive (...) habits, or ‘motivated repetition’, and although addiction is bad, it ferments out of the ordinary stuff underpinning any neural habit. Lewis gives us a convincing story about the process that leads from ordinary controlled consumption through to quite heavy addictive consumption, but I claim that in some extreme cases the eventual state of deep learning tips over into clinically significant impairment and disorder. Addiction is an elastic concept, and although it develops through mild and moderate forms, the impairment we see in severe cases needs to be acknowledged. This impairment, I argue, consists in the chronic automatic consumption present in late stage addiction. In this condition, the desiring self largely drops out the picture, as the addicted individual begins to mindlessly consume. This impairment is clinically significant because the machinery of motivated rationality has become corrupted. To bolster this claim I compare what is going on in these extreme cases with what goes on in people who dissociate in cases of depersonalization disorder. (shrink)

While some philosophers believe disabilities constitute a “bad-difference,” others think they constitute a “mere-difference” (Barnes 2016). On this latter view, while disabilities may create certain hardships, having a disability is not bad in itself. I argue that chronic pain problematizes this disability-neutral view. In doing so, I first survey the literature on chronic pain (§1). Then, I argue that Barnes’s mere-difference view cannot adequately accommodate the lived experiences of many people who suffer from chronic pain (§2). Next, (...) I consider two ways Barnes might respond and I explain why these responses are not workable (§3). Finally, I conclude with a brief discussion of disability variantism, the view that just as some disabilities can be neutral or even positive for some individuals, other disabilities like chronic pain can understandably make some people’s lives miserable not because society has failed them but simply because some conditions can openly conflict with well-being (§4). (shrink)

The extracellular‐signal regulated kinases 1/2 (ERK or ERKs) are involved in the regulation of important neuronal functions, including neuronal plasticity in normal and pathological conditions. We present findings that support the notion that the kinetics and localization of ERK are intrinsically linked, in that the duration of ERK activation dictates its subcellular compartmentalization and/or trafficking. The latter, in turn, dictates whether ERK‐expressing cells would enter a program of cell death, survival or differentiation. We summarize experimental data showing that (...) class='Hi'>chronic activation of ERK plays a role in the mechanisms that trigger neurodegeneration. We also discuss how MKPs, members of the subclass of dual specificity phosphatases, might be the link between ERK kinetics and its subcellular localization. BioEssays 25:1085–1095, 2003. © 2003 Wiley Periodicals, Inc. (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)

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)

Exercise may influence components of executive functioning, specifically cognitive control and action monitoring. We aimed to determine whether high level exercise improves the efficacy of cognitive control in response to differing levels of conflict. Fitter individuals were expected to demonstrate enhanced action monitoring and optimal levels of cognitive control in response to changing task demands. Participants were divided into the highly active or low-active group based on self-reported activity using the International Physical Activity Questionnaire. A modified flanker task was then (...) performed, in which the level of conflict was modulated by distance of distractors from the target and congruency of arrows. Electroencephalography was collected during 800 trials; trials were 80% congruent, 20% incongruent, 50% close, and 50% far. The error-related negativity and error positivity were extracted from the difference wave of correct and incorrect response locked epochs, the N2 from the difference wave of congruent and incongruent stimulus locked epochs and the P3 from stimulus locked epochs. The HA group showed a larger Pe amplitude compared to the low-active group. Close trials elicited a larger N2 amplitude than far trials in the HA group, but not the low-active group, the HA group also made fewer errors on far trials than on close trials. Finally, the P3 was smaller in the lowest conflict condition in the HA, but not the low-active group. These findings suggest that habitual, high levels of exercise may influence the endogenous processing involved in pre-response conflict detection and the post-error response. (shrink)

As someone diagnosed with severe chronic mental illness early in my adolescence, I have spent over half of my life feeling out of step with the rest of the world due to hospitalizations, treatment programs, and the disruptions caused by anxiety, anorexia, depression, and obsessive–compulsive disorder. The effect of my mental health conditions compounded by these treatment environments means I often feel that I experience time passing differently, which results in sensations of removal and isolation from those around (...) me. The global shutdown caused by the COVID-19 pandemic seemed a way for normative bodies to experience the passing of time the way I always have. In this paper, I extend Dr. Sara Wasson’s analysis of the ways in which chronic pain resists narrative coherence to my own temporal experience of chronic mental illness, specifically my embodied experience of the pandemic. I use that embodied experience as a case study for examining how the reciprocal nature of time and narrativity, as outlined by Dr. Paul Ricoeur, can create isolation for those struggling with their temporality due to chronic mental illness. To acknowledge and grapple with the ramifications of discursive and material privilege involved in such situations, I include an analysis of Robert Desjarlais’s 1994 article “Struggling Along: The Possibilities for Experience among the Homeless Mentally Ill,” in which he investigates a similar phenomenon of being outside of structured sequential narrative time in the residents of a Boston shelter for the mentally ill. (shrink)

Background: Chronic Pain (CP) has serious medical and social consequences, and leads to economic burden that threatens the sustainability of healthcare services. Thus, optimized management of pain tools to support CP patients in adjusting to their condition and improving quality of life is timely. Although Acceptance and Commitment Therapy (ACT) is considered an evidence-based psychological approach for CP, evidence for the efficacy of online-delivered ACT for CP is still scarce. At the same time, studies suggest that self-compassion mediates the (...) change in disability and psychopathological symptoms in ACT interventions for CP, although self-compassion is not a specific target in ACT. Thus, an explicit focus on self-compassion might increase the efficacy of ACT interventions for CP, although this hypothesis has not been tested. This study aims to develop an eHealth ACT and compassion-based self-management intervention for CP, the iACTwithPain, and to compare its efficacy in improving health outcomes to a similar ACT-only intervention and a waiting list group. Methods: The eHealth platform that will host the interventions will be developed using a flat design identity and will be interactive. The iACTwithPain intervention will comprise 8 weekly self-management sessions, and will be developed taking into consideration the psychological flexibility model applied to CP, with the addition of explicit compassion-based components. To analyse whether the iACTwithPain intervention will present superiority in improving CP’s impact and related health markers over the two other conditions, this study will follow a RCT design with three arms. CP patients will be recruited through direct contact with patient associations and healthcare services and a national press release in Portugal. Outcome measurement will be conducted at baseline, post-intervention and at 3- and 6-months follow-ups. The interventions’ acceptability will also be assessed. Discussion: The iACTwithPain intervention is expected to improve CP patients’ psychosocial functioning, quality of life, and empowerment, by promoting adaptive disease management and regulation of pain-related internal experiences. Results will contribute to a better understanding on the pertinence of adding compassion elements to ACT for CP and to reach an optimized intervention for CP. (shrink)

Applying a necessary condition communication theory formalism roughly similar to that of Dretske, but focused entirely on the statistical properties of long sequences of signals emitted by the interacting cognitive modules of human biology, we explore the regularities apparent in comorbid psychiatric and chronic physical disorders using an extension of recent perspectives on autoimmune disease. We find that structured psychosocial stress can literally write a distorted image of itself onto child development, resulting in a life course trajectory to characteristic (...) forms of comorbid mind/body dysfunction affecting both dominant and subordinate populations within a pathogenic social hierarchy. (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)

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)

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)

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)

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)

BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis, a biopsychosocial approach to care is crucial.AimsThis paper aims to present an example of a co-creation process in the context of chronic diseases preferences and perspectives of young adults with multiple sclerosis and healthcare professionals on the relevance, objectives, and modalities of a biopsychosocial intervention and on strategies/barriers to participation.MethodsA participatory mixed-method approach in (...) three consecutive steps was implemented: online surveys with YawMS and HCPs, online focus groups with YawMS, consultation with an advisory board composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction. Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability. (shrink)

Chronic widespread pain is one of the most difficult pain conditions to treat due to an unknown etiology and a lack of innovative treatment design and effectiveness. Based upon preliminary findings within the fields of motivational psychology, integrative neuroscience, diaphragmatic breathing, and vagal nerve stimulation, we propose a new treatment intervention, motivational nondirective resonance breathing, as a means of reducing pain and suffering in patients with chronic widespread pain. Motivational nondirective resonance breathing provides patients with a noninvasive (...) means of potentially modulating five psychophysiological mechanisms imperative for endogenously treating pain and increasing overall quality of life. (shrink)