This paper is about an avian influenza outbreak in South Africa’s commercial ostrich industry. The outbreak was managed according to international best practice and led to the destruction of 30,000 ostriches in two of South Africa’s provinces. However, the industry has a long history of managing low pathogenic avian influenza outbreaks in a different way. We use the 2004 outbreak and earlier approaches to managing disease to shed light on recent debates on how we might live differently with (...) livestock diseases. The paper is based on in-depth interviews with farmers, veterinarians, scientists and agriculture officials. (shrink)

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new (...) perspective on moral issues. Participants and research context: One case was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management. (shrink)

We investigated family members’ lived experience of Parkinson’s disease aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together (...) with PD exploring the kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey. (shrink)

Implanted medical devices—for example, cardiac defibrillators, deep brain stimulators, and insulin pumps—offer users the possibility of regaining some control over an increasingly unruly body, the opportunity to become part “cyborg” in service of addressing pressing health needs. We recognize the value and effectiveness of such devices, but call attention to what may be less clear to potential users—that their vulnerabilities may not entirely disappear but instead shift. We explore the kinds of shifting vulnerabilities experienced by people with Parkinson’s (...) class='Hi'>disease (PD) who receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD. (shrink)

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

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)

Background Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely diagnoses and suitable care. These clinical difficulties add to the physical and psychological impacts of living with chronic and often severe medical conditions. From the standpoint of pragmatist ethics, the morally problematic situations that adults living with rare diseases experience matter crucially. However, there (...) is little known about these experiences.Methods A survey study was conducted with 121 adults living with rare diseases in Québec, Canada, to identify morally problematic situations encountered in the healthcare system and everyday life as part of a participatory action research project. Morally problematic situations elicited internal tensions and constraints to agency.Results Adults living with rare diseases experienced morally problematic situations of stigmatization, disbelief, and sometimes abuse in the healthcare system. These situations were compounded by diagnostic delays, inadequate care, and suboptimal follow-up, and led some individuals to opt-out of medical care. In their personal lives, these individuals sometimes found themselves in situations of physical and financial dependency. They often also had to give up professional occupations, academic training, or life projects.Conclusions Adults living with rare diseases experience important morally problematic situations navigating the healthcare system and their everyday lives, some of which could be alleviated through interventions developed through future participatory action research. (shrink)

The coronavirus disease 2019 pandemic has strongly affected oncology patients. Many screening and treatment programs have been postponed or canceled, and such patients also experience fear of increased risk of exposure to the virus. In many cases, locus of control, coping flexibility, and perception of a supportive environment, specifically family resilience, can allow for positive emotional outcomes for individuals managing complex health conditions like cancer. This study aims to determine if family resilience, coping flexibility, and locus of control can (...) mitigate the negative affect caused by the pandemic and enhance positive affect in breast cancer patients. One hundred and fifty-four female patients with breast cancer completed the Walsh’s Family Resilience Questionnaire, the Perceived Ability to Cope With Trauma Scale, the Positive-Negative Affect Schedule, and the Mini Locus of Control Scale. Family resilience and internality of locus of control contribute significantly to positive affective responses. Family resilience is responsible for mitigating the negative affect perceived during the pandemic and is enhanced by external locus of control. Evidence suggests that clinical psychologists should develop and propose programs to support oncology patients’ family resilience, coping flexibility, and internal locus of control, allowing for decreased stress and improved adaptability for effectively managing cancer treatment during the pandemic. (shrink)

BackgroundHealth-related quality of life is known to be impaired in individuals with coronary artery disease, especially in those after a recent acute coronary syndrome. Heart failure is a common burden in this population that significantly contributes to worsening HRQoL. To accurately measure the level of HRQoL in individuals with CAD after ACS, disease-specific scales, such as the Minnesota living with heart failure questionnaire, are recommended. Nevertheless, to date, there has not been a study that (...) would comprehensively evaluate the psychometric properties of the MLHFQ in a large sample of individuals with CAD after ACS. The debate regarding the internal structure of MLHFQ is also still present. Hence, this study aimed to translate the MLHFQ and evaluate its internal structure, reliability/precision, and validity in individuals with CAD following ACS in Lithuania.MethodsIn the cross-sectional study, 1,083 participants were evaluated for sociodemographic and clinical characteristics. HRQoL was measured using the MLHFQ and the Short Form-36 health survey. In addition, exercise capacity was also evaluated in the study patients, using a standardized computer-driven bicycle ergometer.ResultsThe internal consistency of the MLHFQ subscales was found to be good. Confirmatory factor analysis provided the support for the three-factor model of the MLHFQ and showed acceptable fit [comparative fit indices = 0.894; goodness-of-fit = 0.898; non-normal fit index = 0.879, and root mean square error of approximation = 0.073]. Regarding convergent evidence, significant associations were found between the MLHFQ domains and the SF-36 domains and EC.ConclusionThe current study completed cultural validation and provided further information on the psychometric characteristics of the MLHFQ in Lithuania, suggesting MLHFQ as a valid and reliable instrument to measure HRQoL. The Lithuanian version of MLHFQ is best described by a three-factor solution, measuring physical, social, and emotional dimensions of HRQoL among individuals with CAD following ACS. (shrink)

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer’s disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or (...) powers of attorney, as well as discussions about these issues—and the need for them—with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish. (shrink)

The aim of this study was to gain a deeper understanding of the experience of time when living with severe incurable disease. A phenomenological and philosophical approach of description and deciphering were used. In our modern health care system there is an on-going focus on utilizing and recording the use of time, but less focus on the patient’s experience of time, which highlights the need to explore the patients’ experiences, particularly when life is vulnerable and time is (...) limited. The empirical data consisted of 26 open-ended interviews with 23 participants receiving palliative care at home, in hospital or in a nursing home in Norway. The theoretical frameworks used are mainly based upon K. Martinsens philosophy of care, K. E. Løgstrup phenomenological philosophy, in addition to C. Saunders’ hospice philosophy, L. Feigenberg’s thanatology and U. Qvarnström’s research exploring patient’s reactions to impending death. Experience of time is described as being a movement that moves the individual towards death in the field of opposites, and deciphered to be a universal, but a typical and unique experience emerging through three integrated levels: Sense of time; where time is described as a movement that is proceeding at varying speeds. Relate totime; where the awareness of limited life changes the understanding of time to be more existential. Being in time; where limited time seems to clarify the basic living conditions and phenomena of life. The existence of life when the prospect of death is present is characterized by emotional swings that move within polarizing dimensions which is reflected in the experience of time illustrated as the moves of the pendulum in a grandfather clock. The diversity of the experience of time is oscillating between going fast or slow, being busy or calm, being unpredictable but predictable, safe or unsafe and between being good or bad, depending on the embodied situation of the individual. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Living with Blindness and Fibromyalgia while Occupying AgingKatherine SchneiderI’m blind from birth and in middle age developed fibromyalgia. I’ve retired from a thirty year career as a clinical psychologist and am working on my third book tentatively titled “Occupying Aging: Delights, Disabilities and Daily Life.” My relationship with medical professionals includes gratitude (without good care I would not be alive) and also frustration for assumptions often (...) made about my abilities. I write from the perspectives of an impatient patient, woman living in the United States, former provider of mental health services, person with both invisible and visible disabilities, and boomer moving into the world of the aged. My stories are mine of course, but when I swap medical stories with blind friends, similar happenings abound.When my mom fell down the stairs at a friend’s house, five months pregnant with me, she was told to go to bed for the next four months to save the pregnancy. Thus began the impact of health care professionals on me. I was born a month premature and spent my first month in an incubator. In 1949 it wasn’t known that the enriched oxygen atmosphere in an incubator would cause blindness. At least one lawsuit was filed against physicians and a hospital by a person blinded in this way. A large out–of–court settlement was received. The way I look at it, the health care community did the best they knew and without enough oxygen, I would have died.Early in my life, my parents took me to several ophthalmologists to see what could be done for my vision. Family folklore has it that I could smell a hospital as we entered and would begin howling. These early traumatic experiences may have led to my current healthy lifestyle so I don’t have to go to doctors much now. By about age five, it was clear that nothing could be done about my vision. For the next twenty years my forays into the health care system were for tonsillitis, sprains, and the usual childhood ills.In my early twenties, I developed acute glaucoma in one eye—caused, I’m convinced, by birth control pills. In seeking treatment for this condition, I encountered the first truly insensitive physician I’d met, who said, “Your eyes aren’t doing you any good; let’s take them out.” I was horrified! They were my eyes. I was attached to them, psychologically as well as physically. It turned out that a simple operation relieved the pressure and allowed me to keep my eyes. True, they are not the best looking big brown eyes around, but they did come with the package.Life with blindness seemed quite straightforward until my early forties, when I developed extreme fatigue and pain all over. I was worried. I knew a blind woman who had developed multiple sclerosis and I admired her, but I did not want to walk in her brave footsteps. Then a college student came to see me with the same symptoms and said that she had recently been diagnosed with fibromyalgia. I am often very empathetic with people’s concerns, but this time she complimented me by saying, “You’re great! You seem to know just how I feel.” I sagely counseled her about portioning out her energy carefully, prioritizing, using short cuts, and taking elevators when possible. Being an adult [End Page 216] student used to overachieving, she did not like what I was saying, but said she’d try to follow my advice because she could no longer do it all.What finally broke through my own denial was the day coiling up a hose and dragging it to the basement for the winter took me an hour. It left me totally exhausted and I figured that even being middle aged couldn’t account for feeling that awful.After a thorough physical and plenty of blood work to rule out Lyme disease and multiple sclerosis, I was diagnosed with fibromyalgia and placed on low doses of antidepressants to help me sleep through the night. The medication worked and I began to feel like myself again. My battle to accept that... (shrink)

Over the last few decades there has been a revival of interest in virtue ethics, with the emphasis on the virtuous caregiver. This paper deals with the ‘virtuous patient’, specifically the patient with End Stage Renal Disease (ESRD). We believe that a virtue approach provides insights not available to current methods of studying coping styles and coping strategies. Data are derived from seven semi-structured in-depth interviews. The transcripts of the interviews were subjected to an Interpretative Phenomenological (...) Analysis (IPA). The focus of the analysis was on ‘living well with chronic illness’. It appears that the moral challenges faced by patients with an ESRD are manifold. When they are invited to tell the story of their illness, they do not explicitly speak of virtues, but they often refer to moral qualities, and to attitudes that can be regarded as virtuous. We identify several such concepts in the narratives of patients with ESRD. We conclude that the Aristotelian model of virtue ethics is particularly descriptively (and possibly also normatively) relevant to the explanation of the life narratives and the moral challenges of patients with an ESRD. (shrink)

This article uses the African communal concept of ubuntu to reflect on the ministry of Mashoko Christian Hospital, Zimbabwe, to people living with the human immunodeficiency virus and AIDS during the early days since the discovery of the disease. The main question this article seeks to answer is: from a perspective of the African philosophy of ubuntu, how did the ministry of MCH to PLWHA challenge the fear and judgemental attitudes towards the disease within the Churches (...) of Christ in Zimbabwe? This leads to another question: what should the churches learn from MCH’s response to HIV and AIDS? This article only focusses on trends in conduct and not on a detailed history of engaging HIV and AIDS. The significance of this article is to demonstrate the important role played by faith-based organisations in complementing the compassion and care often lacking in the official churches’ response to HIV and AIDS. (shrink)

As a university professor, an environmentalist, and a world-traveller, Sue Hendler was thriving. Then she was diagnosed with metastatic breast cancer. She had to give up her job, make hard decisions about medical treatment, and drastically shorten her vision of the future. As her cancer spread, she ironically acquired a new identity as a cancer "survivor." Compelled to find meaning in her "new normal" of life with a fatal disease, she decided to write for a wider audience. (...) In Dying in Public: Living with Metastatic Breast Cancer, Hendler talks about her experiences of undergoing surgery, taking steroids, receiving chemotherapy, and enrolling in a clinical drug trial. As her condition worsens she remains committed to living fully. She struggles with writing a bucket list, discusses her "legacy," and talks about her feelings of anger and the importance of love. She also describes how she lived, towards the end, with the support of the members of her "Care Team," a group of over thirty friends, family, and health care workers who enabled her to remain at home until the day before her death. This honest, witty, and unsentimental depiction of "dying in public" is a profound tribute to a life well lived. (shrink)

To write about the disease of breast cancer from both scientific and spiritual perspectives is to reflect upon our genetic and spiritual ancestry. We examine the issues involved in breast cancer at the intersections of spirituality, technology, and science, using the fundamental thing we know about being human: our bodies. Our goal in this essay is to offer close readings of women's spiritual and bodily journeys through the disease of breast cancer. We have discovered that both illness and (...) health come within the stories of particular people and particular disciplines. And to learn more about breast cancer, both scientific and spiritual aspects, one must be attentive to such particularities. Medicine and religion are bodily experiences, and being a body-self is what it means to be human. (shrink)

In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students were (...) recruited from KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease. The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses’ lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses’ lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them trapped (...) at home, both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended “lived space” with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective. (shrink)

This study addresses the Bible as a coping tool in a sample of Swedish practising Christians living with cancer, gathered through a qualitative, in-depth interview study, on religious experiences and expressions that serve in the process of coping with a life situation changed by the disease. Through content analyses, and case studies combining tools from Pargament’s coping theory with, above all, role theory, it is shown that the Bible is a part of the coping process (...) for approximately half of the informants. Furthermore, the Bible plays very different roles in the coping process, even for one single person. In the analyzed material, two different ways of using the Bible in the coping process occurs: Biblical passages as bearer of meaning for the informants, and the actual reading as such of the Bible. The former with two different functions in the coping process: in the Biblical passages, see a direct appeal from God to the individual on a personal level and a specific character in a Bible passage serves as an object of identification for the informant. In the coping process, the Bible provides coping tools for the identified coping methods meditative reading, role taking, and interpretation of biblical passages. As such, it mainly serves within the framework of the preserving comprehensive coping method. It is also shown that there are changes in the use of the Bible in connection with the changed life situation, as a result of the disease. (shrink)

This paper provides an overview of the societal impact of a rising dementia population and examines the legal and ethical implications posed by voluntary registries as a community-oriented solution to improve interactions between law enforcement and individuals with dementia. It provides a survey of active voluntary registries across the United States, with a focus on Arizona, which has the highest projected growth for individuals living with dementia in the country.

The spread of the novel coronavirus brought an impact on human civilization. The history of infectious diseases teaches us that overcoming them requires the long-term perspective for the complex of the following keys, including the mutation of pathogens, the disappearance of vectors, the effectiveness of protective measures, the acquisition of herd immunity, the development of vaccines, and the climate. So, what do we lose or gain in this unwanted situation of living with viruses? From the perspective of historical (...) anthropology, it is necessary to consider the transformation of humanity and the culture, social etiquette, ceremonies, and rites in the age of living with COVID-19. (shrink)

The aim of the study was to determine how the health of people living with Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome is affected by social and structural factors conducive to non-adherence to antiretroviral treatment. In a qualitative study conducted at Victoria Hospital in Alice, a town in the Eastern Cape, South Africa, 23 isiXhosa-speaking participants between the ages of 18 and 60 years were interviewed. Guided by the social-ecological framework of Bronfenbrenner, which is based on the notion (...) that the health-seeking behaviour of people living with HIV/aids is influenced by their social, institutional and physical environments, the analysis of the data identified the following themes conducive to non-adherence to antiretroviral treatment: food insecurity, financial constraints, poor service from health workers, unfair dismissal, fear of the consequences of disclosure, and rejection by church members. Based on these findings, and given that there is no single model of best practice that can appropriately address the various social and structural factors complicating the treatment of HIV/aids and hence the containing of the pandemic, the study suggests the need for not only supportive community initiatives, but a collaborative approach at both local and national level, and particularly in impoverished communities, by the appropriate departments of state to promote adherence to anti-retroviral treatment by making treatment and counselling facilities more accessible to PLWHA and educating communities about the implications and prevention of the disease. (shrink)

The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.

The purpose of this study was to explore how one person experienced the early years of dementia as she was living through the pre-clinical and earlyclinical stages of Alzheimer’s disease. Interviews were held onfour occasions over a period of three years. The data were analyzed usingthe descriptive phenomenological psychological method, in which theresearcher approached the data from a caring perspective. The livedexperience of early-stage Alzheimer’s disease showed to be acomplex transitional phenomenon that involves a dynamic process of (...) personaladjustment. The process is set in motion as the participant receives thediagnosis and will eventually lead her towards a state of increased opennessand receptiveness toward the disease. The results describe this process asit unfolds in the context of the overall experience, and the variousadjustments that the participant undertakes. Some reflections concerning theplausible needs of patients with early-stage Alzheimer’s diseaseare included in the discussion. (shrink)

Introduction. The inadequacy of the support measures provided to children with orphan diseases is exacerbated by the trend towards an increase in the number of children with such a diagnosis. Orphan diseases also include diseases caused by primary immunodeficiency or congenital errors of immunity, which are life-threatening. However, these people are part of society and require attention from it, and social and economic measures from the state. Most of them, with proper treatment, socialization and appropriate government support, (...) can lead a normal life and live a full life. Scientific novelty of the research. On the basis of the study results, the authors contribute to clarifying the principles used in the implementation of the security function of the social state. The targeting of social support measures must be supplemented with the principles of social justice and freedom to choose ways to meet the needs of specific categories of citizens, understood as follows. The welfare state supports those citizens who need it most of all, namely, the poor. Specific categories of citizens can satisfy their needs, while having the opportunity to choose. This opportunity arises thanks to the receipt of targeted assistance in the form of monthly or annual subsidies. Families with children with orphan diseases should also be included in these categories. If they have the right to receive annual government subsidies, they will be able to spend these funds depending on the current needs due to the state of health of their children with orphan diseases (for the purchase of socially important food products; medicines, medical nutrition, and various services). The aim of the work is to study the problems of providing support measures to children with orphan diseases in the context of the current model of the welfare state. The article analyzes the satisfaction of patients with congenital immunity errors with various types of state support, identifies problems that reduce their satisfaction. Methods. The authors use methods such as comparative analysis, study of regulatory legal acts, sociological analysis. Results. On the basis of the study results the effectiveness of measures of state support for children with orphan diseases, studying the best experience of foreign countries, proposals were made to clarify the principles used to implement the security function by the social state, to expand the composition of the subjects involved in providing support measures analyzed in the article. Conclusions. The results obtained make it possible to assert that the targeted approach, which is basic in the model of the welfare state, does not cover most of the problems of children with innate immunity errors and, accordingly, the families that represent their interests. (shrink)

Over the course of the year 2020, the global scientific community dedicated considerable effort to understanding COVID-19. In this review, we discuss some of the findings accumulated between the onset of the pandemic and the end of 2020, and argue that although COVID-19 is clearly a biological disease tied to a specific virus, the culture–mind relation at the heart of cultural psychology is nonetheless essential to understanding the pandemic. Striking differences have been observed in terms of relative mortality, transmission (...) rates, behavioral responses, official policies, compliance with authorities, and even the extent to which beliefs about COVID-19 have been politicized across different societies and groups. Moreover, many minority groups have very different experiences of the pandemic relative to dominant groups, notably through existing health inequities as well as discrimination and marginalization, which we believe calls for a better integration of political and socioeconomic factors into cultural psychology and into the narrative of health and illness in psychological science more broadly. Finally, individual differences in, for example, intolerance of uncertainty, optimism, conspiratorial thinking, or collectivist orientation are influenced by cultural context, with implications for behaviors that are relevant to the spread and impact of COVID-19, such as mask-wearing and social distancing. The interplay between cultural context and the experience and expression of mental disorders continues to be documented by cultural-clinical psychology; the current work extends this thinking to infectious disease, with special attention to diseases spread by social contact and fought at least in part through social interventions. We will discuss cultural influences on the transmission, course, and outcome of COVID-19 at three levels: cross-society differences; within-society communities and intergroup relations; and individual differences shaped by cultural context. We conclude by considering potential theoretical implications of this perspective on infectious disease for cultural psychology and related disciplines, as well as practical implications of this perspective on science communication and public health interventions. (shrink)

In recounting some of the key sociological insights offered by over 30 years of research on emotion management, or emotion regulation, we orient our discussion around sociological answers to the following questions: What is emotion management? How does emotion management occur? Why does it occur? And what are its consequences or benefits? In this review, we argue that emotion and its management are profoundly social. Through daily interactions with others, individuals learn to differentiate which emotions are appropriate when, as (...) well as the most effective ways to bring their feelings in line with culturally agreed-upon emotion norms. Emotion management is also functional, not only for the individuals who perform it, but also for the dyads, groups, institutions, and societies in which they are embedded. The social processes through which individuals learn to display culturally appropriate emotions have important implications on many levels, from interpersonal interactions to the development of social movements. (shrink)

The traditional living donor was very healthy. However, as the supply-demand gap continues to expand, transplant programs have become more accepting of less healthy donors. This paper focuses on the other extreme, asking whether and when individuals who have life-limiting conditions should be considered for living organ donation. We discuss ethical issues raised by 1) donation by individuals with progressive severe debilitating disease for whom there is no ameliorative therapy; and 2) donation by individuals who are (...) imminently dying or would die by the donation process itself. (shrink)

The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous (...) assumptions concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life. (shrink)

It is now possible for someone with HIV disease to receive a kidney transplant from a living donor, although there is evidence only about the short-term outcomes of such a procedure. A person with HIV disease may not wish to disclose their diagnosis to a potential kidney donor. This paper argues that disclosure of the diagnosis of HIV to the donor is not necessary for informed consent. Concerns about the relationship of trust between the clinical (...) team and the donor hold weight in deciding whether disclosure is essential, though openness about the limited nature of informed consent may facilitate a trusting relationship in the absence of disclosure. In general, the recipient's medical information should be treated as confidential, thereby avoiding any need to distinguish between HIV and other medical conditions. (shrink)

Coronavirus disease 2019 (COVID‐19) has placed significant strain on United States’ health care and health care providers. While most Americans were sheltering in place, nurses headed to work. Many lacked adequate personal protective equipment (PPE), increasing the risk of becoming infected or infecting others. Some health care organizations were not transparent with their nurses; many nurses were gagged from speaking up about the conditions in their workplaces. This study used a descriptive phenomenological design to describe the lived experience (...) of acute care nurses working with limited access to PPE during the COVID‐19 pandemic. Unstructured interviews were conducted with 28 acute care nurses via telephone, WebEx, and Zoom. Data were analyzed using thematic analysis. The major theme, emotional roller coaster, describes the varied intense emotions the nurses experienced during the early weeks of the pandemic, encompassing eight subthemes: scared and afraid, sense of isolation, anger, betrayal, overwhelmed and exhausted, grief, helpless and at a loss, and denial. Other themes include: self‐care, ‘hoping for the best’, ‘nurses are not invincible’, and ‘I feel lucky’. The high levels of stress and mental assault resulting from the COVID‐19 crisis call for early stress assessment of nurses and provision of psychological intervention to mitigate lasting psychological trauma. (shrink)

Human encroachment on the habitats of wild animals and the dense living conditions of farmed animals increase spill-over risk of emerging infectious diseases from animals to humans (such as COVID-19). In this article, we defend two claims: First, we argue that in order to limit the risk of emerging infectious disease outbreaks in the future, a One Health approach is needed, which focuses on human, animal, and environmental health. Second, we claim that One Health should not solely be (...) grounded in collaborations between veterinary, medical, and environmental scientists, but should also involve more dialogue with animal and environmental ethicists. Such an interdisciplinary approach would result in epidemiology-driven measures that are ethically legitimate. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and mutually exclusive (...) regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

In Japan, most residents with Hansen’s disease live in dedicated sanatoria because of an established quarantine policy, even after being cured of the primary disease. They suffer from secondary diseases and are advancing in age, and advance care planning is increasingly crucial for them to live their lives with dignity in a sanatorium. In this study, we have three aims: to understand how to promote communication about their wishes for medical treatment, care, and recuperation; to identify (...) required assistance; and to explore how to promote ACP in a sanatorium. This study is a qualitative research conducted through semi-structured interviews. The study included 57 ex-Hansen’s disease patients and 66 staff from 10 facilities. Ex-Hansen’s disease patients were expected to consider ACP, but this was in the context of uncertainty about whether a sanatorium would close and whether there would be doctors to manage their needs. They reported being confused when staff rushed to confirm their advance directives, feeling that they were not provided with enough information before being approached. Barriers to promoting ACP were found to be insufficient of team-based care and information sharing, ex-Hansen’s disease patients’ weak interest in their end of life, and their conservative thoughts. We believe that ACP can be achieved by listening to the wishes of recovered patients through regular home care visits by nurses and everyday support by care workers. Furthermore, multidisciplinary coordination is urgently needed for promoting ACP. (shrink)

Smoking remains the leading cause of preventable disease and death in the United States, killing approximately 480,000 people each year. This crushing health burden falls disproportionately, and recent CDC data shows that large disparities in adult cigarette smoking remain. One factor in these disparities is the use of flavors. Menthol cigarettes and other flavored tobacco products are used at higher rates by vulnerable populations including youth and young adults, African Americans, women, Hispanics and Asian Americans. This is no accident; (...) the tobacco industry has long targeted these same groups. Given FDA's failure to act to ban flavored tobacco products, states and municipalities are considering taking matters into their own hands to protect their communities from these dangerous products. The authors will explore state and local authority to restrict the sales of these products and review the evidence base indicating that removing flavored tobacco products – and menthol combustible products in particular - from the market would significantly reduce the toll of illness and death caused by these products. (shrink)

This study seeks to understand the subjective experience or lived world typical of patients with Parkinson’s disease. It uses qualitative methodology, grounded in a hermeneutic-phenomenological perspective, to consider lived experience in a small sample of 7 individuals. The analysis identified four themes that appear to be characteristic of the experience of PD: A) Denial, B) Emotion and symptom expression, C) Volitional and spontaneous action, and D) Alteration of temporal perspective. Concepts from existential-phenomenological philosophy were used to reflect upon (...) these themes to achieve a synthetic account of the subjective experience of PD. The findings of the study are compared to other findings in the phenomenological literature, and suggestions for further research are posed. (shrink)

Background:Smart Aging is a serious game (SG) platform that generates a 3D virtual reality environment in which users perform a set of screening tasks designed to allow evaluation of global cognition. Each task replicates activities of daily living performed in a familiar environment. The main goal of the present study was to ascertain whether Smart Aging could differentiate between different types and levels of cognitive impairment in patients with neurodegenerative disease.Methods:Ninety-one subjects (mean age = 70.29 ± 7.70 (...) years)—healthy older adults (HCs,n= 23), patients with single-domain amnesic mild cognitive impairment (aMCI,n= 23), patients with single-domain executive Parkinson's disease MCI (PD-MCI,n= 20), and patients with mild Alzheimer's disease (mild AD,n= 25)—were enrolled in the study. All participants underwent cognitive evaluations performed using both traditional neuropsychological assessment tools, including the Mini-Mental State Examination (MMSE), Montreal Overall Cognitive Assessment (MoCA), and the Smart Aging platform. We analyzed global scores on Smart Aging indices (i.e., accuracy, time, distance) as well as the Smart Aging total score, looking for differences between the four groups.Results:The findings revealed significant between-group differences in all the Smart Aging indices: accuracy (p< 0.001), time (p< 0.001), distance (p< 0.001), and total Smart Aging score (p< 0.001). The HCs outperformed the mild AD, aMCI, and PD-MCI patients in terms of accuracy, time, distance, and Smart Aging total score. In addition, the mild AD group was outperformed both by the HCs and by the aMCI and PD-MCI patients on accuracy and distance. No significant differences were found between aMCI and PD-MCI patients. Finally, the Smart Aging scores significantly correlated with the results of the neuropsychological assessments used.Conclusion:These findings, although preliminary due to the small sample size, suggest the validity of Smart Aging as a screening tool for the detection of cognitive impairment in patients with neurodegenerative diseases. (shrink)

Background Trust is an essential phenomenon of relationship between patients and healthcare professionals and can be described as an accepted vulnerability to the power of another person over something that one cares about in virtue of goodwill toward the trustor. This characterization of interpersonal trust appears to be adequate for patients suffering from chronic illness. Trust is especially important in the context of chronic cardiovascular diseases as one of the main global health problems. Research Aim The purpose of the qualitative (...) study was to gain a deeper understanding of how people with chronic cardiovascular disease experience and make sense of trust in healthcare professionals. Research Design Eleven semi-structured interviews with participants analysed using interpretative phenomenological analysis to explore in detail their lived experience of trust as a relational phenomenon. Participants and Research Context Participants with chronic cardiovascular disease were purposively recruited from inpatients on the cardiology ward of the university hospital located in central Slovakia. Ethical Considerations The study was approved by the faculty ethics committee. Participants gave their written informed consent. Findings Four Interrelated Group Experiential Themes Sense of co-existence; Belief in competence; Will to help; Ontological security with eight subthemes were identified. The findings describe the participants' experience with trust in healthcare professionals as a phenomenon of close co-existence, which is rooted in the participants’ vulnerability and dependence on the goodwill and competence of health professionals to help with the consequence of (re)establishing a sense of ontological security in the situation of chronic illness. Conclusion Findings will contribute to an in-depth understanding of trust as an existential dimension of human co-existence and an ethical requirement of healthcare practice, inspire patient empowerment interventions, support adherence to treatment, and person-centred care. (shrink)

We, in the rare disease community are grateful to Halley et al. (2023) for highlighting some of the long-overlooked barriers to care. As the parent of a non-ambulatory, teenage boy living with Duch...

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

Using three paradigm cases of persons living with Parkinson's Disease (PD) the authors make a case for augmenting and enriching a Cartesian medical account of the pathophysiology of PD with an enriched understanding of the lived body experience of PD, the lived implications of PD for a particular person's concerns and coping with the illness. Linking and adding a thick description of the lived experience of PD can enrich caregiving imagination and attunement to the patient's (...) possibilities, concerns and constraints. The work of Merleau-Ponty is used to articulate the middle terms of the lived experience of dwelling in a lifeworld. Examining lived experience of embodied intentionality, skilled bodily capacities as highlighted in Merleau-Ponty's non-mechanistic physiology opens new therapeutic, coping and caregiving possibilities. Matching temporal rhythms can decrease the stress of being assisted with activities of daily living. For example, caregivers and patients alike can be taught strategies for extending their lived bodily capacities by altering rhythms, by shifting hyperactivity to different parts of the body and other strategies that change the perceptual experience associated with walking in different environment. A medical account of the pathophysiology of PD is nessessary and useful, but not sufficient for designing caregiving in ways that enrich and extend the existential skills of dwelling of persons with PD. The dominance of mechanistic physiology makes caregivers assume that it is the 'real discourse' about the disease, causing researchers and caregivers alike to overlook the equally real lived experience of the patient which requires different descriptive discourses and different sources of understanding. Lack of dialogue between the two discourses is tragic for patients because caregivers need both in order to provide attuned, effective caregiving. (shrink)

John Stuart Mill has often been charged with inconsistency in his social thinking. The reason given is usually that he tries to combine too many different traditions of thought into an ideological whole. Too deeply affected by his father and his severely purposeful early education ever to repudiate utilitarianism, he was yet too sensitive to disregard criticism of his inherited creed, and too open-minded to ignore areas of thought and experience generally allen to the utilitarian mind. Professor Robson, whose (...) editing of Mill’s works has already put social theorists and historians of ideas in his debt, disputes this view. He argues that, beneath Mill’s eclecticism, beneath his perhaps over-generous acknow-ledgements of his obligations to others, there is a basic unity of ideas. His discussion of the influences on Mill’s thought covers some fairly well-trodden ground but he brings a good deal of common sense to bear on an area where the excitement of the academic chase for sources has sometimes obscured the obvious. On the whole, he claims, the influence of Coleridge, the Suint-Simonians, Carlyle and Comte was limited; some of their specific ideas Mill accepted and used, but he was clearly aware of the differences of emphasis and context that did exist. Harriet Taylor and Tocqueville contributed more, the first by extending Mill’s vision of desirable social ends and by emphasising the difficulties of applying social theory in the world of practice, the second by his insights into democratic society and his demonstration of a proper sociological method. The deepest influence was, however, his early Benthamite upbringing and it is this life-long commitment to a utilitarian ethic that constitutes, for Professor Robson, the still, calm centre of his mind. There are other unifying ideas—his bias towards practicality and his constant concern with evolving a satisfactory methodology for the social sciences—but even these centred on a continual examination of the adequacies and inadequacies of his father’s doctrine. (shrink)

Situational and experiential factors provide a moral lens through which people judge the morality or otherwise of actions. The research in this volume goes a step further and illustrates that individual differences may interact with these situational and experiential factors to explain the acquisition of positive attitudes to immoral behaviour.

Individuals living with rare conditions are faced with important challenges derived from the rarity of their conditions and aggravated by the low priority given to rare disease research. However, current realities of rare disease research require consideration of the relationship between subjectivity and ‘traditional’ objectivity. Objectivity in research has traditionally been associated with processes and descriptions that are independent of the investigator. The need for researchers to provide unbiased knowledge and achieve a balance between (...) objectivity and the underlying values in nursing and scientific research requires an examination of how objectivity is conceptualized within the context of rare disease research. The aim of this paper is to examine scientific objectivity in rare disease research from a philosophical viewpoint and, in doing so, demonstrate the need to redefine it to reflect the current scientific environment. As such, healthcare providers working on this field need to redefine objectivity around ethical and moral obligation to advance science in an equitable manner with the end goal to produce knowledge that is trustworthy and beneficial to our patients. (shrink)

© 2015 NATCO, The Organization for Transplant Professionals.Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose (...) of this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant. (shrink)

Terminally ill patients in 10 states plus Washington, D.C. have the right to take prescribed medications to end their lives (medical aid in dying). But otherwise-eligible patients with neuromuscular disabilities (ALS and other illnesses) are excluded if they are physically unable to “self-administer” the medications without assistance. This exclusion is incompatible with disability rights laws that mandate assistance to provide equal access to health care. This contradiction between aid-in-dying laws and disability rights laws can force patients and clinicians (...) into violating one or the other, potentially creating an underclass of patients denied medical care that is available to those with other (less physically disabling) terminal illnesses. The immediacy of this issue is demonstrated by a lawsuit in Federal court filed in August 2021, requesting assistance in self-administration for terminally ill patients with neuromuscular diseases. This paper discusses the background of this conflict, the ethical issues at the heart of the dilemma, and recommends potential remedies. (shrink)