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)

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.

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)

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 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)

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)

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)

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)

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)

This paper discusses some of the anthropological andphilosophical features of the use of self-managementplans by patients with a chronic disease, focusing onpatients with asthma. Characteristics of thistechnologically mediated form of self-care arecontrasted with the work of Mauss and Foucault on bodytechniques and techniques of self. The similaritiesand differences between self-management of asthma andFoucault's technologies of self highlight some of theways in which self-management contributes tomodifications in the definitions of patients andphysicians. Patients, in measuring their lungfunction, first (...) come to rely on measurements more thanon felt disturbances, but next, felt disturbancesbecome modified by previous measurements. Physicians,on the other hand, see their role changed from expertto being a participant in a joint treatment. It isargued that the concept of agency is more appropriatefor describing the advantage of self-management forpatients than 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)

Life with chronic disease and chronic care is hard and people who live in disadvantage may lack the freedom to prioritise their care because of increased c.

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)

ObjectivesThis study aimed to describe the experiences and challenges faced by adolescents with moderate and severe congenital heart defects or Chronic Rheumatic Heart Disease and to determine their needs in order to develop an Adolescent Transition Psychoeducational Program.MethodsThe study involved seven adolescents with moderate to severe CHD/CRHD, six parents, and four health care providers in Institute Jantung Negara. Participants were invited for a semi-structured interview. Qualitative data were analyzed through the Atlas.ti 7 program using triangulation methods.Results/conclusionsWe identified five (...) themes concerning the experience and challenges of adolescents relating to: emotional/psychological issues; the progress of the illness; relationship issues; future preparation; and, school and community. These themes were identified together with eleven subcategories. The staff expressed support for the development of the Adolescent Transition Psychoeducational Program and adolescents with CHD/CRHD and their parents were willing to participate in the program if their schedule allowed. Their suggestions to improve the program were classified into six categories, with two main themes, the self-management of illness in life and the future; and, social support. In conclusion, the findings from the situation analysis act as a basis for a conceptual framework that will contribute to the development of an Adolescent Transition Psychoeducational Program that aims to empower adolescents with CHD/CRHD, enabling them to manage challenges during the transition phase between childhood and adulthood. (shrink)

HARWOOD L and CLARK AM. Nursing Inquiry 2012; 19: 29–38 Understanding health decisions using critical realism: home‐dialysis decision‐making during chronic kidney diseaseThis paper examines home‐dialysis decision making in people with Chronic Kidney Disease (CKD) from the perspective of critical realism. CKD programmes focus on patient education for self‐management to delay the progression of kidney disease and the preparation and support for renal replacement therapy e.g.) dialysis and transplantation. Home‐dialysis has clear health, societal and economic benefits (...) yet service usage is low despite efforts to realign resources and educate individuals. Current research on the determinants of modality selection is superficial and insufficient to capture the complexities embedded in the process of dialysis modality selection. Predictors of home‐dialysis selection and the effect of chronic kidney disease educational programmes provide a limited explanation of this experience. A re‐conceptualization of the problem is required in order to fully understand this process. The epistemology and ontology of critical realism guides our knowledge and methodology particularly suited for examination of these complexities. This approach examines the deeper mechanisms and wider determinants associated with modality decision making, specifically who chooses home dialysis and under what circumstances. Until more is known regarding dialysis modality decision making service usage of home dialysis will remain low as interventions will be based on inadequate epistemology. (shrink)

Background and aims. In pediatrics receiving a diagnosis of a chronic condition is a matter that involves caregivers at first. Beyond the basic issues of caring for the physical body of the ill child, caregivers’ manners of facing and making sense of the disease orient and co-construct their children’s sensemaking processes of the disease itself. The aim of this article is to explore the experience of a rare chronic illness, Hereditary Angioedema (HAE), in pediatrics, from the (...) caregivers’ perspective. Hereditary Angioedema is characterized by subcutaneous swellings that can involve the mucosal tissues of external as well as internal parts of the body, manifesting in a highly variable and unpredictable way in terms of localization, severity, and frequency. Materials and methods. Within a qualitatively-driven research design, we conducted a qualitative narrative semiotic analysis of n.28 mothers’ narratives on their children’s disease experience. Narratives were collected by an ad hoc interview on three domains of the disease experience: A. interpretation of the disease variability; B. dialogical processes; C. management of the disease. Subsequently, we executed a TwoStep cluster analysis for categorical data to detect cross-sectional profiles of the maternal sensemaking processes of the disease. Results. The coding grid was built analyzing the characteristic of the narrative links that orient the connection between the elements of the experience within each domain: A. the connection among events, for the domain of the interpretation of the disease variability; B. the connection between self and other, for the domain of the dialogue; C. the connection among sensemaking and actions, for the domain of the management of the disease. Results from cluster analysis show three narrative profiles: 1. adempitive; 2. reactive; 3. dynamic. Discussion. Profiles will be discussed in the light of the general conceptual framework of the Sense of Grip on the Disease (SoGoD) highlighting the importance of those sensemaking processes which, instead of relying on a coherent and close interpretation of the disease, are characterized by a degree of tolerance for the uncertainty and the unknowingly. (shrink)

Self-management interventions are a heterogeneous group of interventions that are regarded as important tools for the management of chronic diseases. They consist of a broad range of techniques and are available for a large variety of chronic organic as well as mental conditions or illnesses, which are by definition generally chronic. These interventions aim that the individual concerned takes substantial responsibility for managing the symptoms, treatment, and physical and psychosocial consequences associated with having a (...) class='Hi'>chronic medical condition, disability or disease. Alternate terms used in this context, among others, are self-care... (shrink)

Inflammatory responses are essential for the clearance of pathogens and the repair of injured tissues; however, if these responses are not properly controlled chronic inflammation can occur. Chronic inflammation is now recognized as a contributing factor to many age‐associated diseases including metabolic disorders, arthritis, neurodegeneration, and cardiovascular disease. Due to the connection between chronic inflammation and these diseases, it is essential to understand underlying mechanisms behind this process. In this review, factors that contribute to chronic (...) inflammation are discussed. Further, we emphasize the emerging roles of microRNAs (miRNAs) and other noncoding RNAs (ncRNA) in regulating chronic inflammatory states, making them important future diagnostic markers and therapeutic targets. Copyright Line: © 2015 The Authors BioEssays Published by Wiley‐VCH Verlag GmbH & Co. KGaA. (shrink)

The article maintains that chronic fatigue syndrome can be properly understood only by taking an integrated perspective in which evolutionary, developmental and ecological aspects are considered. The integrative approach, supplemented by a complexity theory and psychoneuroimmunological research, is capable of explaining why there are so few structural aberrations to be found in chronic fatigue syndrome and why specific treatment is so difficult to establish. A major outcome of the investigation, that all individuals with chronic fatigue syndrome are (...) diseased in their own way, emphasises the need to study the development of personalised life histories. It also highlights an ethical dimension; personalised disease defies essentialist thinking on patient management. Another major outcome, which follows from the developmental systems perspective, is the dissolution of ontological mind-body dualism. This in turn allows for a methodological complementation of the biological and phenomenological approaches to knowledge. New research strategies that may help to resolve chronic fatigue syndrome, grounded in the revised perspective on individual development, are suggested. (shrink)

Non-communicable diseases disproportionately affect low and middle-income countries where nearly three quarters of NCD deaths occur. Bangladesh is also in NCD burden. This cross-sectional study was done on 50 health facilities centres at Gazipur district in Bangladesh from July 2015 to December 2015 to introduce SARA for better monitoring and evaluation of non-communicable diseases health service delivery. The General Service readiness index score was 61.52% refers to the fact that about 62% of all the facilities were ready to provide general (...) services like basic amenities, basic equipment, standard precautions for infection prevention, and diagnostic capacity and essential medicines to the patients. But in case of non-communicable diseases, among all the health facilities 40% had chronic respiratory disease and cardiovascular diseases diagnosis/ management and only 32% had availability of diabetes diagnosis/management. Overall readiness score was 52% in chronic respiratory disease, 73% in cardiovascular disease and 70% in diabetes. Therefore, service availability and readiness of the health facilities to provide NCD related health services were not up to the mark for facing future targets. A full-scale census survey of all the facilities of the study area would give a better understanding of the availability and service readiness. (shrink)

Automated decision-making (ADM) systems can be worn in and on the body for various purposes, such as for tracking and managing chronic conditions. One case in point is do-it-yourself open-source artificial pancreas systems, through which users engage in what is referred to as “looping”; combining continuous glucose monitors and insulin pumps placed on the body with digital communication technologies to develop an ADM system for personal diabetes management. The idea behind these personalized systems is to delegate decision-making regarding (...) insulin to an algorithm that can make autonomous decisions. Based on interviews and photo diaries with Danish “loopers”, this paper highlights two interrelated narratives of how users have to care for the loop by _maintaining_ a stable communication circuit between body and ADM system, and by _modifying_ the loop through analysis and reflection. It shows how the human takes turns with the ADM system through practical doings and anticipation to safeguard continuous management of chronic disease. (shrink)

This essay examines the debate surrounding New York City’s controversial diabetes registry program. Exploring the tensions between public health officials and privacy advocates, the article explores how diabetes is imagined in the public sphere. Although rhetorics underscoring privacy may seem the more progressive discourse, I argue New York City’s Department of Health and Mental Hygiene has the more forward-looking plan, attempting to reconstitute diabetes not as a chronic condition necessitating individual management but as a disease that requires (...) systemic intervention. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced (...) by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

Inflammatory bowel disease is chronic and incurable. Imperious diarrhea, rectal bleeding, fatigue, and weight loss, the main manifestations, cause a decrease in the quality of the patient’s personal and professional life. The objectives of this study were to identify a possible relationship between early maladaptive schemas and disease activity status using logistic regression, to identify the prevalence of early maladaptive schemes in patients and to propose a psychotherapeutic intervention plan. The following were found in a sample of (...) 46 patients aged 16–76 years. An increase in the domain overvigilance and inhibition score had a significant effect, with an increase of 1.137 CI95% [1.031, 1.254] of the risk of the disease being diagnosed as active. High and very high scores were observed for the emotional deprivation scheme and dependence/incompetence, vulnerability to harm and illness and subjugation schemas. The results show that the proposed model could predict and reconfirm the diagnosis; patients have specific psychotherapeutic needs. The therapeutic goal would be to offer care, empathy and protection, to strengthen self-confidence, to make patients realize that they have the ability to cope, to provide permission, encourage the patient to experiment, and guide the patient to express their anger healthily. The therapy scheme’s intervention could lead to increased long-term disease management capacity and, consequently, reduce costs directly and indirectly caused by this condition. (shrink)

The problem of inadequate pain management for both terminally ill patients and patients with chronic pain has recently been documented by a number of authors and studies. A 1997 report by the Institute of Medicine, for example, states that “a significant proportion of dying patients and patients with advanced disease experience serious pain, despite the availability of effective pharmacological and other options for relieving most pain.” There are particularly impressive data that pain associated with cancer is not (...) adequately treated.The problem has been attributed to inadequate education of physicians on approaches to pain management and an often misguided belief that prolonged therapy with certain pain medication will lead to addiction; legal obstacles, such as physicians’ fear of criminal prosecution and other disciplinary actions by state licensing boards for overprescribing narcotics; and inadequate insurance coverage as a result of narrow eligibility criteria for hospice care for Medicare beneficiaries, and inadequate reimbursement more generally for pain management and palliative care. (shrink)

Managed care is evolving in ways that pose unique ethical challenges to those interested in the intersection of clinical and organizational ethics. For example, Disease Management is a form of managed care that has emerged in response to chronic illness. DM is a healthcare management tool that coordinates resources across an entire health care delivery system and throughout the life cycle of chronic disease. Health Maintenance Organizations have reduced some costs in the delivery of (...) acute care, but real cost savings will result only with greater efficiencies in the delivery of costly chronic care. DM is a systematic, population-based approach that identifies persons at risk of chronic ailment, intervenes with specific programs of care, measures clinical and other outcomes, and provides continuous quality improvement. Characterized as a movement to patient-driven services, DM involves a complex web of provider relations. (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.

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)

Artificial intelligence (AI) has garnered tremendous attention in health care, and many hope that AI can enhance our health system’s ability to care for people with chronic and degenerative conditions, including Parkinson’s Disease (PD). This paper reports the themes and lessons derived from a qualitative study with people living with PD, family caregivers, and health care providers regarding the ethical dimensions of using AI to monitor, assess, and predict PD symptoms and progression. Thematic analysis identified ethical concerns at (...) four intersecting levels: personal, interpersonal, professional/institutional, and societal levels. Reflecting on potential benefits of predictive algorithms that can continuously collect and process longitudinal data, participants expressed a desire for more timely, ongoing, and accurate information that could enhance management of day-to-day fluctuations and facilitate clinical and personal care as their disease progresses. Nonetheless, they voiced concerns about intersecting ethical questions around evolving illness identities, familial and professional care relationships, privacy, and data ownership/governance. The multi-layer analysis provides a helpful way to understand the ethics of using AI in monitoring and managing PD and other chronic/degenerative conditions. (shrink)

This is a patient in the relatively early stages of a serious chronic disease requiring ongoing vigilant management if acute complications are to be minimized. In today's healthcare system, we see...

Our contribution proposes a philosophical and empirical analysis of emerging therapeutic education practices in the field of Parkinson’s disease, managed by deep brain stimulation (DBS). To this end, we mobilise the work on chronic illnesses of sociologists Anselm Strauss and Isabelle Baszanger. Through this conceptual and theoretical approach, the aim is to examine an hypothesis: Can the emerging offer of therapeutic education for Parkinson’s patients, managed by DBS, meet the requirement of a “recomposition” with a chronic degenerative (...) disease whose management remains continuous and life-long? A positive response to this assumption, supported in a second stage, leads us, in a third stage, to raise a limit: How far can we “negotiate” and “recompose” in the context of a disease, managed by a care that tends to increase the life expectancy of the patients and make the symptomatology evolve? Finally, a fourth stage highlights some (non-exhaustive) implications of these findings in ethical and political terms. (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)

Abstract.This introduction outlines key elements in a recent United Kingdom Department of Health report that, it is hoped, will change attitudes, expectations and practices in the care of patients with chronic illness [Department of Health: 2001, The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. London: Department of Health.]. The findings of the Task Force are summarised as accurately as possible and without comment. Analysis and comment can be found in the (...) accompanying papers. (shrink)