Chronic Diseases, Misc

There is a lot of conceptual engineering going on in medical research. I substantiate this claim with two examples, the medical debate about cancer classification and about obesity as a disease I also argue that the proper target of conceptual engineering in medical research are experts’ conceptions. These are explicitly written down in documents and guidelines, and they bear on research and policies. In the second part of the chapter, I propose an externalist framework in which conceptions have both the (...) explanatory power of psychological concepts and that of semantic concepts. It is likely, however, that human activities and practices distinct from medical research, and regulated by different practices and epistemic rules, call for different targets for conceptual engineering. I conclude with indicating an open agenda of problems for philosophers of medicine interested in conceptual engineering. (shrink)

Assumptions about obesity—e.g., its connection to ill health, its causes, etc.—are still prevalent today, and they make up what I call the medical model of fatness. In this paper, I argue that the medical model was established on the basis of insufficient evidence and has nevertheless continued to be relied upon to justify methodological choices that further entrench the assumptions of the medical model. These choices are illegitimate in so far as they conflict with both the epistemic and social aims (...) of obesity research. I conclude the paper with a partial solution to these epistemic and social shortcomings. (shrink)

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of (...) morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences. (shrink)

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

ABSTRACT:Biomedical and philosophical traditions postulate the experience of pain either as quantifiable or as sociocultural phenomena. This critical assessment offers a close reading of Lara Parker’s Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (2020) and Abby Norman’s Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain (2018), analyzing the authors’ use of language as a tool to comprehend and communicate pain. Norman’s and Parker’s memoirs narrate the lived experience of endometriosis, a condition diagnosed (...) almost exclusively in women and characterized by chronic pain. The essay looks at how metaphors are employed in living and narrating endometriosis in medical, social, and cultural settings that are highly skeptical of women’s pain and trace a shift in the use of pain metaphors towards an acceptance of the pain experience, which is conceptualized as empowering by the climax of the narrative. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:It Is Going to Be a Long Clinic DaySalvador Cruz-FloresIt was a routine neurology clinic day. I entered the room where one of the residents was seeing a patient that we will call Patty, a 32-year-old long-standing epilepsy patient. Patty was sitting in the chair with her husband by her side. She started screaming at me, complaining that she was tired of feeling sick and unable to do anything. (...) She had been in and out of emergency rooms with a variety of complaints, from passing out to dizziness with nausea and vomiting. She was visibly angry and started cursing me with direct expletives and blaming me for all her ailments.Her husband was quiet and, at times, would cover his face as if he was embarrassed. I felt an initial burst of anger. I felt my face getting red. I made a great effort to stay quiet, leaned on the exam table facing them, lowered my voice, and braced to take the barrage of insults that were coming my way. I had to make a strong conscious effort to control my emotions and let her vent. I felt that if I responded in kind, I would inflame the situation. Moreover, a resident and a student working with me that day were also present in the room, and I felt it was my duty to behave professionally, so I sat and tried to do active listening with the idea of offering solutions to her complaints. I am not sure how long the event lasted, but it seemed like an eternity. As she slowed down, I apologized for making her feel not cared for, repeated some of her complaints, and tried to offer solutions to them, but she would not have it and did not accept anything I said. She wanted to get her prescriptions and leave the clinic. I offered to have one of my colleagues do the follow-up as she really did not want to see me anymore.Patty is one of those patients that when you see the name in the schedule, you cringe and tell yourself, it is going to be a long clinic day. She could be in the group of patients who are considered very difficult. Before me, she had been seen by several other neurologists. They likely also preferred not to see her on the schedule because she is one of the 20–30% of patients that have a type of functional psychogenic disorder that becomes more complicated because of the coexistence of epileptic seizures along with non-epileptic psychogenic events. The latter is a more problematic event because it does not respond to pharmacological treatment and causes a lot of disability. The best way to establish whether an event is a true epileptic event or a non-epileptic psychogenic event is to do continuous electroencephalographic monitoring to capture as many events as possible on video. I tried different combinations of medications to no avail and with significant side effects. I tried to set her up for electroencephalogram home monitoring to tease the epileptic and psychogenic events apart. In truth, her social circumstances, insurance coverage, and economic situation made it impossible to do so. Every time she came to the clinic, she had a multitude of complaints, and she would ask for a medication to treat the problem. Any mention of the potential psychogenic nature of her problems would result in a defensive attitude "so you are saying I am crazy." We discussed multiple times the need to be careful with the medications and the potential bad side effects. I wanted to help her, but with every visit, there seemed to be a barrier, and the visit would end on bad terms. At least, that is how I felt. I was left every time, with a feeling of frustration. I believe that she left the clinic feeling the same. That day, I left the clinic upset and depressed. I tried to convince myself I had done all I could to help her. I just could not understand why this was the result.Several years have passed since I have seen Patty in the clinic. She certainly has not... (shrink)

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways (...) in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established. (shrink)

Chronic diseases are the main disease burden worldwide, leading to premature deaths and poor individual and population health outcomes. Although modern medicine has made significant progress in developing effective treatments, only around 50% of people follow long-term treatment recommendations in high-income countries and presumably even less in low-income and middle-income countries.1 Health outcomes for chronic diseases follow a social gradient across socioeconomic groups, suggesting that the 50% adherence rate distributes unequally across social groups, affecting those who live in disadvantage the (...) most despite universal health coverage.2 Bioethicists have largely ignored inequalities that arise from differences in adherence to long-term treatments and the importance of the ethical dimension of chronicity for clinical practice. As I discuss in detail elsewhere, the concept of ‘chronic disease’ lacks a successful and agreed definition, failing to be structured in a traditional way and allowing for a disjunctive group of diseases to fall under the concept.3 Still, the main element that helps distinguish ‘chronic diseases’ from all other diseases is their long duration, so the noun chronicity can help demarcate and identify the nature of ‘chronic disease’. Drawing on conceptual analysis and phenomenological research on illness that highlight the tension between the cyclical and static elements of chronic disease, I have argued that chronicity has a phenomenological sense beyond its …. (shrink)

Imagination and idealism are particularly important creative epistemic virtues for the medical sciences if we hope to improve the health of the world’s ageing population. To date, imagination and idealism within the medical sciences have been dominated by a paradigm of disease control, a paradigm which has realised significant, but also limited, success. Disease control proved particularly successful in mitigating the early-life mortality risks from infectious diseases, but it has proved less successful when applied to the chronic diseases of late (...) life (like cancer). The time is ripe for the emergence and prominence of a supplementary medical research paradigm, the paradigm of ‘healthy ageing’ which prioritises the goal of rate (of ageing) control rather than disease control. This is the difference between extending the human healthspan versus extending survival by managing (or trying to eliminate) the multi-morbidities, frailty and disability currently prevalent in late life. The idealism of the disease control paradigm is myopic because it ignores the health constraints imposed by the inborn ageing process itself, a biological reality which is already inflicting significant economic and disease burdens on the world’s ageing populations. Unless the medical sciences retard the rate of biological ageing, these problems will continue to be amplified as larger numbers of persons survive into late life. (shrink)

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

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including (...) information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Asthma:Strangling the Caged Bird (Something Like a Prayer)Imani Perry (bio)Yet do a marvel at this curious thing; To make a poet black and bid him sing!– Countee CullenI know why the caged bird sings, ah me,When his wing is bruised and his bosom sore,—When he beats his bars and he would be free;It is not a carol of joy or glee,But a prayer that he sends from his heart's (...) deep core,But a plea, that upward to Heaven he flings—I know why the caged bird sings!– Paul Laurence DunbarAsthma is an inflammation of the airways. But that word in a Black American life is an associative one. It is emergency room visits, "treatments," and jackleg care. It is death's door. It is the vague feeling that something in the bedroom walls, school corridors, cells, coming up from the pavement, is eking away at your life. We speak of it knowingly and frequently."How is your asthma?" When Dr. Bird asked me that question, I was alarmed. I'd forgotten I had ever received the diagnosis. But there it was in my chart. There are so many words about me housed in that digital file. I expect there's more than I could guess. The chart itself is a testament to access. Not everybody has the protective surveillance of a chart or an ID, much less medical insurance. Mine is far more crowded than I'd prefer.The conditions of my life and body have made it such that I could forget my own asthma. But I think about asthma all the time, because it has snaked through my family and friends and communities. I have written, more than once, that the most powerful statement that hip hop leaves us with is this: An art form made by generations ravaged by environmental racism is defiantly profound because it depends upon the mastery of breath. Breath control is as much its hallmark as rhyming. Snatching oneself from the gates of a breath-thieving hell, with a heavy bass line, is its testimony. [End Page 213]Have you ever gasped for air? You grab at it and get almost nothing. Flail. You are rendered indeliberate. Panic is the only option in that moment. Invisible hands crush your windpipe but never touching a bone. (After this, how could you not believe in ghosts?) When you get out of it, relief spreads over you. It is euphoric at first. Then trauma settles and you ritually hold your breath and neck muscles, hypervigilant for the next time though praying against it.Black people have the highest rates of asthma in the United States. Black women are most likely to die of the disease. I am not a scientist so I can speculate about this terrible fact freely. I think it is because Black women's roles require a tamping down of suffering in the service of labor for others. Private keening and public fortitude. There is poison in our post-coloniality of being.That said, the post-coloniality of being doesn't belong alone to those with colonized and Jim Crowed histories. It is a shared though wildly unequal condition. The post-coloniality of being characterizes this epoch, post- ages of revolution and decolonization and social transformation, in which we (the big we, not the freedom-fighter we) against all better dreams, remain committed to being suffocated. And as the climate crisis shows its face, we have to admit that everybody's breath is shallowing. Everyone's body is being invaded by the ethic of accumulation, to a greater or lesser extent. And that "lesser" promise is the worst kind of seduction. Air purifiers and green detergents are nothing but stop-gap measures in a world bent on its own destruction.I could say, we, Black women, are like canaries in the coal mine. But the metaphor hits too close to home. It is too true a thing to attach it to the glibness of literary figurative language. Our airways are literally closing in. In the Black South, to be "strangled" doesn't require someone's hands around your throat. It is used the... (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)

A diabetic woman awakens from a coma having forgotten the last ten years of her life. A Haitian immigrant has nightmares that begin bleeding into his waking hours. A retired teacher loses the use of her right hand due to pain of no known origin. Noga Arikha began studying these patients and their confounding symptoms in order to explore how our physical experiences inform our identities. Soon after she initiated her work, the question took on unexpected urgency as Arikha's own (...) mother began to show signs of Alzheimer's disease. In The Ceiling Outside, Arikha recounts this life-changing experience and grapples with the unbreakable links between our bodies and our sense of self. Weaving together stories of her subjects' troubles and her mother's decline, Arikha searches for some meaning in the science she has set out to study. The result is an unforgettable journey across the ever-shifting boundaries between ourselves and each other."--. (shrink)

That aluminum is fatally toxic is beyond doubt, demonstrated by mass human poisoning at Camelford in Cornwall in Britain in 1988 (chapter 18) and by occasional fish kills (p. 49). Aluminum may also be a contributing factor in a number of human diseases, in particular those involving brain and nerves (p. 124) — autism, Alzheimer’s disease (AD) (chapter 14), Parkinson’s disease, multiple sclerosis. Aluminum salts used in kidney dialysis may be responsible for dialysis-related encephalopathy (pp. 38, 79). Aluminum adjuvants in (...) vaccine can cause macrophagic myofasciitis (MMF: inflammation and associated microscopic muscle necrosis at the injection site) as well as such whole-body ailments as chronic fatigue syndrome and marked cognitive deficits (Rigolet et al. 2014); one middle-aged individual injected with five aluminum-adjuvanted vaccines within 4 weeks became work-disabled (pp. 72-73). Studying the possible dangers associated with aluminum adjuvants in vaccines is complicated by the fact that aluminum acts as an antigen as well as an adjuvant — the immune system generates antibodies against aluminum itself, so that later exposures to aluminum might produce an antibody cascade capable of damaging any of the tissues in which aluminum had accumulated (pp. 73-76). Christopher Exley has studied aluminum in relation to human health for some 35 years. This book summarizes his work and cites the pertinent primary publications (some 200) in appropriate peer-reviewed journals. The book also offers quite convincing evidence of the determined efforts by a variety of vested interests to disparage and suppress Exley’s work and findings. In my opinion, the published work summarized in this book makes a plausible case based on empirical evidence that aluminum may be a contributing causative factor in neurological and nerve diseases. Further, Exley suggests fully detailed mechanisms and quite plausible for how that comes about. Beyond that, he points to a quite fundamental a priori reason why aluminum, among all the other elements and metals, might be so uniquely dangerous. It is the third most abundant element in the Earth’s crust (after oxygen and silicon), yet there are no known biological uses of aluminum. By contrast, several other metals and non-metals are essential components of some biological systems, for example, iron in hemoglobin in blood (pp. 5-6, 11). Those two facts make it far from implausible that absorption of aluminum could be biologically harmful, by competing with or replacing other metals, or perhaps just because of its chemically oxidative properties. But if all that is so, how has the Earth’s biosphere flourished for billions of years without succumbing to the toxicity of the super-abundant aluminum? (shrink)

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

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)

ObjectiveBulimia nervosa and binge eating disorder are eating disorders characterized by recurrent binge eating episodes. Overlap exists between ED diagnostic groups, with BE episodes presenting one clinical feature that occurs transdiagnostically. Neuroimaging of the responses of those with BN and BED to disorder-specific stimuli, such as food, is not extensively investigated. Furthermore, to our knowledge, there have been no previous published studies examining the neural response of individuals currently experiencing binge eating, to low energy foods. Our objective was to examine (...) the neural responses to both low energy and high energy food images in three emotive categories in BN and BED participants.MethodsNineteen females with BN or BED, comprising the binge eating group, and 19 age-matched healthy control ’s completed thorough clinical assessment prior to functional MRI. Neural response to low energy and high energy foods and non-food images was compared between groups using whole-brain exploratory analyses, from which six regions of interest were then selected: frontal, occipital, temporal, and parietal lobes; insula and cingulate.ResultsIn response to low energy food images, the BEG demonstrated differential neural responses to all three low energy foods categories compared to HCs. Correlational analyses found a significant association between frequency of binge episodes and diminished temporal lobe and greater occipital lobe response. In response to high energy food images, compared to HC’s, the BEG demonstrated significantly decreased neural activity in response to all high energy food images. The HC’s had significantly greater neural activity in the limbic system, occipital lobe, temporal lobe, frontal lobe, and limbic system in response to high energy food images.ConclusionResults in the low energy food condition indicate that binge frequency may be related to increased aberrant neural responding. Furthermore, differences were found between groups in all ROI’s except the insula. The neural response seen in the BEG to disgust food images may indicate disengagement with this particular stimuli. In the high energy food condition, results demonstrate that neural activity in BN and BED patients may decrease in response to high energy foods, suggesting disengagement with foods that may be more consistent with those consumed during a binge eating episode. (shrink)

BackgroundCommonly applied measures of symptoms of anxiety are not sensitive to disease-specific anxiety in patients with chronic obstructive pulmonary disease. There is a need for validated instruments measuring COPD-specific anxiety. Therefore, we translated the COPD-Anxiety Questionnaire into Danish and performed an initial validation of the psychometric properties in a sample of patients with COPD.Materials and MethodsTranslation procedures followed the World Health Organization guidelines. Participants with COPD completed questionnaires measuring COPD-specific anxiety, general psychological distress as well as variables related to COPD, (...) quality of life, and socio-demography.ResultsA total of 260 patients with COPD completed questionnaires. The Danish version of CAF-R-DK demonstrated acceptable Cronbach’s α values that were comparable with those of the original CAF. As expected, the CAF-R-DK showed positive correlations with convergent constructs and negative correlations with discriminant constructs. However, the results for specific subdomains of the CAF-R-DK indicated inconsistency in the underlying concept of disease-specific anxiety, which was also suggested based on the subsequent confirmatory and exploratory factor analyzes.ConclusionThe CAF could serve as an important supplement to generic psychological distress screening of patients with COPD in somatic health care settings, and the questionnaire is now available in Danish. Translation into other languages is needed with the purpose of obtaining data for further testing the psychometric properties of the questionnaire. (shrink)

BackgroundChronic airway diseases are prevalent and costly conditions. Interdisciplinary rehabilitation programs that include Acceptance and Commitment-based components could be important to tackle the vicious circle linking progression of the disease, inactivity, and psychopathological symptoms.MethodsA retrospective evaluation of routinely collected data of an interdisciplinary rehabilitation program was performed. The program included group sessions including patient education, breathing exercise, occupational therapy and an ACT-based psychological treatment, and individual sessions of physical therapy. Demographic data, clinical characteristics of the patients and the values of (...) outcome variables before treatment, at discharge, at 3 months, and at 6 months were extracted from medical records. Multiple imputation was employed to address missing data. Linear mixed models were employed to assess changes over time. Multivariable logistic regression was performed to assess predictors of a minimum clinically important change of health status from baseline to the 6-months follow-up.ResultsData from 31 patients with chronic obstructive pulmonary disease and 12 patients with bronchiectasis were extracted. Health status improved from baseline to discharge to the 3 months follow-up, but not to the 6 months follow-up. Anxiety and depression improved across all the time points. Quality of life did not improve over time. Having a worse health status at baseline and fewer depressive symptoms were significantly associated with achieving a minimum clinically important change of health status at 6 months. The effects of the interdisciplinary program were not different for patients with COPD or with bronchiectasis.DiscussionInterdisciplinary programs including ACT-based components are promising treatments for the rehabilitation of patients with chronic airway diseases. (shrink)

Night eating syndrome is currently classified as an Other Specified Feeding or Eating Disorder under the Diagnostic Statistical Manual−5. This systematic review aims to consolidate the studies that describe the sociodemographic, clinical and psychological features of NES in a population of patients with eating disorders, obesity, or those undergoing bariatric surgery, and were published after the publication of the DSM-5. A further aim was to compare, where possible, NES with BED on the aforementioned variables. Lastly, we aimed to appraise the (...) quality of the studies being included in the review. We conducted a systematic search on three databases which resulted in the selection of 22 studies for the review. We included the articles that studied patients with NES and their sociodemographic, clinical and psychological features in a clinical population, through a quantitative study design. Articles were excluded if the NES patients included in the study had a comorbid psychological disorder, and/or the sample was collected from a university/non-clinical population, and/or the study design was qualitative, and/or NES features were compared with any other disorder, except BED. Our study found that no conclusions about the link between any sociodemographic feature and an NES diagnosis could be made. Further, NES patients presented with elevated ED pathology and higher occurrence of depressive symptoms than controls. Contrary to the literature suggesting that NES and Binge Eating Disorder patients often report overlapping features, questioning the validity of NES as an ED diagnosis, we found that BED can be differentiated from NES by the higher occurrence of emotional eating, body related concerns and abnormal eating episodes. The review also suggested an overlap between NES and Sleep-Related Eating Disorder. We recommend that it is essential to study NES as an independent disorder to further develop its diagnostic criteria and treatment options, thereby, increasing the quality of life of the patients suffering from this syndrome. (shrink)

Anhedonia is the diminished motivation and sensitivity to pleasurable stimuli. It has been reported to be more prevalent in patients with chronic pain as compared to healthy controls. Endometriosis is a chronic inflammatory systemic disease with a significant psychosocial impact that compromises wellbeing and the day-to-day life of patients. Women with endometriosis show significant psychological distress, even more pervasive when chronic pelvic pain is present. In the current review we will discuss the role of anhedonia in endometriotic chronic pelvic pain. (...) We will also present new lines of research that could lead to more fully clarifying the psychological impact of endometriosis and its detrimental repercussions to quality of life and mental health. (shrink)

Deep brain stimulation is part of state-of-the-art treatment for medically refractory Parkinson’s disease, essential tremor or primary dystonia. However, there are multiple movement disorders that present after a static brain lesion and that are frequently refractory to medical treatment. Using Holmes tremor as an example, we discuss the effectiveness of currently available treatments and, performing simulations using a Markov Chain approach, propose that DBS with iterative parameter optimization is expected to be more effective than an approach based on sequential trials (...) of pharmacological agents. Since, in DBS studies for HT, the thalamus is a frequently chosen target, using data from previous studies of lesion connectivity mapping in HT, we compared the connectivity of thalamic and non-thalamic targets with a proxy of the HT network, and found a significantly higher connectivity of thalamic DBS targets in HT. The understanding of brain networks provided by analysis of functional connectivity may thus provide an informed framework for proper surgical targeting of individual patients. Based on these findings, we argue that there is an ethical imperative to at least consider surgical options in patients with uncommon movement disorders, while simultaneously providing consistent information regarding the expected effectiveness and risks, even in a scenario of surgical-risk aversion. An approach based on n-of-1 DBS trials may ultimately significantly improve outcomes while informing on optimal therapeutic targets and parameter settings for HT and other disabling and rare movement disorders. (shrink)

Speech is a primary means of human communication and one of the most basic features of human conduct. Voice is an important part of its subsystems. A speech disorder is a condition that affects the ability of a person to speak normally, which occasionally results in voice impairment with psychological and emotional consequences. Early detection of voice problems is a crucial factor. Computer-based procedures are less costly and easier to administer for such purposes than traditional methods. This study highlights the (...) following issues: recent studies, methods of voice pathology detection, machine learning and deep learning (DL) methods used in data classification, main datasets utilized, and the role of Internet of things (IoT) systems employed in voice pathology diagnosis. Moreover, this study presents different applications, open challenges, and recommendations for future directions of IoT systems and artificial intelligence (AI) approaches in the voice pathology diagnosis. Finally, this study highlights some limitations of voice pathology datasets in comparison with the role of IoT in the healthcare sector, which shows the urgent need to provide efficient approaches and easy and ideal medical diagnostic procedures and treatments of disease identification for doctors and patients. This review covered voice pathology taxonomy, detection techniques, open challenges, limitations, and recommendations for future directions to provide a clear background for doctors and patients. Standard databases, including the Massachusetts Eye and Ear Infirmary, Saarbruecken Voice Database, and the Arabic Voice Pathology Database, were used in most articles reviewed in this article. The classes, features, and main purpose for voice pathology identification are also highlighted. This study focuses on the extraction of voice pathology features, especially speech analysis, extends feature vectors comprising static and dynamic features, and converts these extended feature vectors into solid vectors before passing them to the recognizer. (shrink)

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

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)

ObjectiveThis study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome and comorbid obesity following after continuous positive airway pressure therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management.MethodsQualitative research was conducted using three focus groups with a representative sample of 32 inpatients undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano San Giuseppe Hospital, Verbania, (...) Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes.ResultsSix main themes were extracted: Living the diagnosis as a shock; You should not sleep on it: the importance of prevention; The adjustment to CPAP; Barriers and facilitators to the use of CPAP; Three in a bed; and The relationship with the healthcare system.ConclusionResults of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program. (shrink)

Multiple Sclerosis is a debilitating chronic autoimmune disease of the central nervous system that results in lower quality of life. Medication adherence is important for reducing relapse, disease progression, and MS-related symptoms, particularly during the early stages of MS. However, adherence may be impacted by negative emotional states. Therefore, it is important to identify protective factors. Past research suggests that the ability to discriminate between negative emotional states, also known as negative emotion differentiation, may be protective against enactment of maladaptive (...) risk-related behaviors. However, less is known as to how NED may promote adaptive health behaviors such as medication adherence. Utilizing weekly diaries, we investigated whether NED moderates the association between negative affect and medication adherence rates across 58 weeks among patients newly diagnosed with MS. Results revealed that NED significantly moderated the relationship between negative affect and medication adherence. Specifically, greater negative affect was associated with lower adherence only for individuals reporting low NED. However, this link disappeared for those reporting moderate to high NED. Building upon past research, our findings suggest that NED may promote adaptive health behaviors and have important clinical implications for the treatment and management of chronic illness. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A shift (...) from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

Tremor of the upper extremity is a significant cause of disability in some patients with multiple sclerosis. The MS tremor is complex because it contains an ataxic intentional tremor component due to the involvement of the cerebellum and cerebellar outflow pathways by MS plaques, which makes the MS tremor, in general, less responsive to medications or deep brain stimulation than those associated with essential tremor or Parkinson's disease. The cerebellar component has been thought to be the main reason for making (...) DBS less effective, although it is not clear whether it is due to the lack of suppression of the ataxic tremor by DBS or else. The goal of this study was to clarify the effect of DBS on cerebellar tremor compared to non-cerebellar tremor in a patient with MS. By wearing an accelerometer on the index finger of each hand, we were able to quantitatively characterize kinetic tremor by frequency and amplitude, with cerebellar ataxia component on one hand and that without cerebellar component on the other hand, at the beginning and end of the hand movement approaching a target at DBS Off and On status. We found that cerebellar tremor surprisingly had as good a response to DBS as the tremor without a cerebellar component, but the function control on cerebellar tremor was not as good due to its distal oscillation, which made the amplitude of tremor increasingly greater as it approached the target. This explains why cerebellar tremor or MS tremor with cerebellar component has a poor functional transformation even with a good percentage of tremor control. This case study provides a better understanding of the effect of DBS on cerebellar tremor and MS tremor by using a wearable device, which could help future studies improve patient selection and outcome prediction for DBS treatment of this disabling tremor. (shrink)

There has been an increase in cognitive assessment via the Internet, especially since the coronavirus disease 2019 surged the need for remote psychological assessment. This is the first study to investigate the appropriability of conducting cognitive assessments online with children with a neurodevelopmental condition and intellectual disability, namely, Williams syndrome. This study compared Raven’s Colored Progressive Matrices and British Picture Vocabulary Scale scores from two different groups of children with WS age 10–11 years who were assessed online or face-to-face. Bayesian (...) t-tests showed that children’s RCPM scores were similar across testing conditions, but suggested BPVS scores were higher for participants assessed online. The differences between task protocols are discussed in line with these findings, as well as the implications for neurodevelopmental research. (shrink)

Objective: Deficits in affective processing are associated with impairments in both mental and physical health. The role of affective processing in patients with functional somatic complaints such as irritable bowel syndrome remains unclear. Most studies have focused on the capacity for emotional awareness and expression, but neglect other dimensions of affective processing. Therefore, this study aimed to systematically analyze differences in six different dimensions of affective processing between patients with IBS and healthy controls. Additionally, we exploratively investigated the impact of (...) IBS symptom severity, psychological distress, and attachment styles on affective processing in IBS. Methods: A controlled cross-sectional multi-center study was conducted. Overall, 127 patients with IBS were compared with 127 matched HCs using multivariate analysis of variances. Affective processing was operationalized in line with the affect cascade model on six specific dimensions: emotional experience, emotional awareness, affect tolerance, affect differentiation, affect regulation, and emotional communication. They were measured using two subscales of the Mentalizing Questionnaire and four subscales of the Operationalized Psychodynamic Diagnosis–Structure Questionnaire. Linear regression analysis was used to investigate the influence of IBS symptom severity, depression, anxiety, and anxious and avoidant attachment styles on the different dimensions of affective processing in IBS. Results: Patients with IBS compared to HCs showed deficits in all six dimensions of affective processing. Deficits were largest for affect tolerance and lowest for emotional experience and emotional awareness. Moderate effect sizes were found for affect differentiation, emotional communication, and affect regulation. Moreover, explorative analyses indicated that affective processing in patients with IBS was significantly influenced by levels of anxiety and insecure attachment. Conclusion: The results indicate a specific pattern of affective processing abilities in patients with IBS. The deficits in affective processing are more prominent in the area of understanding and tolerating difficult affective states than experiencing affective states. This opens interesting perspectives for the development of specific psychotherapeutic interventions. (shrink)

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

Aldehyde dehydrogenase 2 (ALDH2) deficiency constitutes one of the most common hereditary enzyme deficiencies, affecting 35% to 40% of East Asians and 8% of the world population. It causes the well-known Asian Alcohol Flush Syndrome, characterized by facial flushing, palpitation, tachycardia, nausea, and other unpleasant feelings when alcohol is consumed. It is also associated with a marked increase in the risk of a variety of serious disorders, including esophageal cancer and osteoporosis. Our recent studies with murine models have demonstrated that (...) a one-time administration of an adeno-associated virus (AAV) gene transfer vector expressing the human ALDH2 coding sequence (AAVrh.10hALDH2) will correct the deficiency state and prevent alcohol-induced abnormalities of the esophagus and bone. If successful in humans, such strategy would reduce the increased risk-associated disorders such as esophageal cancer and osteoporosis, but also prevent the Asian Alcohol Flush Syndrome. This treatment thus raises ethical concerns: although it would potentially prevent fatal disease, it could also allow affected individuals to drink alcohol without suffering the Asian Alcohol Flush Syndrome and, hence, potentially enable personal destructive behavior. Here we explore the ethical arguments against the development of a gene therapy for ALDH2 deficiency and we find them wanting. We contend that development of such treatments is ethically appropriate and should be part and parcel of the solutions offered against the condition. (shrink)

ABSTRACT Objective: to understand the meaning and dimensionality of state of comfort from chronic hemodialysis patients’ perspectives. Method: this is a qualitative study conducted with 30 patients from a hemodialysis clinic from May to June 2018. A semi-structured interview with guiding questions was used. Data were analyzed according to Bardin’s content analysis method, supported by Kolcaba’s theoretical framework. Results: five subcategories for being and feeling comfortable emerged: psychological well-being; Silent environment; Good quality of care; No health changes; Reduction in the (...) frequency/duration of hemodialysis. Regarding dimensionality to achieve comfort, there were three subcategories according to the adopted states. Regarding dimensionality, relief is achieved when a patient is disconnected from the machine, does not attend any session or does not present clinical manifestations of hemodialysis complications. In calm, visible discomforts are linked to change of routine, abandonment of work activities, financial difficulties and poor family support, and psychospiritual issues that weaken in their daily life, making them vulnerable to discomfort. In transcendence, absence of symptoms, attachment to religion, faith or spirituality and resilience to the new routine figured as indexes. States do not act individually, they are related to the experiences of contexts. Conclusion: comfort has meaning of relief from discomfort, state of having met basic human needs, mental and physical well-being, physical, mental and environmental comfort, and final state of nursing therapeutic actions, which permeate the contexts and states of relief, calm, and transcendence. These elements combine with each other to generate unique responses. (shrink)

Advances in genetic diagnostics lead to more patients being diagnosed with hereditary conditions. These findings are often relevant to patients’ relatives. For example, the success of targeted cancer prevention is dependent on effective disclosure to relatives at risk. Without clear information, individuals cannot take advantage of predictive testing and preventive measures. Against this background, we argue that healthcare professionals have a duty to make actionable genetic information available to their patients’ at-risk relatives. We do not try to settle the difficult (...) question of how this duty should be balanced against other duties, such as the duty of confidentiality and a possible duty not to know one’s genetic predisposition. Instead, we argue for the importance of recognising a general responsibility towards at-risk relatives, to be discharged as well as possible within the limits set by conflicting duties and practical considerations. According to a traditional and still dominant perspective, it is the patient’s duty to inform his or her relatives, while healthcare professionals are only obliged to support their patients in discharging this duty. We argue that this perspective is a mistake and an anomaly. Healthcare professionals do not have a duty to ensure that their patients promote the health of third parties. It is often effective and desirable to engage patients in disseminating information to their relatives. However, healthcare professionals should not thereby deflect their own moral responsibility. (shrink)

Background and PurposeTranscranial direct current stimulation is an emerging non-invasive neuromodulation technique for focal epilepsy. Because epilepsy is a disease affecting the brain network, our study was aimed to evaluate and predict the treatment outcome of cathodal tDCS by analyzing the ctDCS-induced functional network alterations.MethodsEither the active 5-day, −1.0 mA, 20-min ctDCS or sham ctDCS targeting at the most active interictal epileptiform discharge regions was applied to 27 subjects suffering from focal epilepsy. The functional networks before and after ctDCS were (...) compared employing graph theoretical analysis based on the functional magnetic resonance imaging data. A support vector machine prediction model was built to predict the treatment outcome of ctDCS using the graph theoretical measures as markers.ResultsOur results revealed that the mean clustering coefficient and the global efficiency decreased significantly, as well as the characteristic path length and the mean shortest path length at the stimulation sites in the fMRI functional networks increased significantly after ctDCS only for the patients with response to the active ctDCS. Our prediction model achieved the mean prediction accuracy of 68.3% after the nested cross validation. The mean area under the receiver operating curve was 0.75, which showed good prediction performance.ConclusionThe study demonstrated that the response to ctDCS was related to the topological alterations in the functional networks of epilepsy patients detected by fMRI. The graph theoretical measures were promising for clinical prediction of ctDCS treatment outcome. (shrink)

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including (...) information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis of (...) a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

Fibromyalgia syndrome (FMS) is a chronic rheumatic disease in which pain is predominant and accompanied by fatigue, anxiety, depression, sleep disturbance and cognitive dysfunction. Although there are numerous pharmacological and non-pharmacological therapeutic alternatives, symptom control is frequently problematic. Manual therapy covers manipulating soft tissue and various joints using the hands. It is organized by mapping of soft tissue structures with rhythmically applied pressure to improve physical function, facilitate daily activities, promote rehabilitation procedures and decrease pain. Massage is generally accepted as (...) an essential component of manual therapy. Stretching and mobilizations are also part of manual therapy. Although numerous beneficial effects of manual therapy and massage on the musculoskeletal system and pain have been proven, the data in FMS patients studies are inconclusive. We hypothesize that manual therapy and massage are beneficial therapeutic options for the control of symptoms of FMS patients. Furthermore, these strategies can be employed in conjunction with well-established and high-evidence therapeutic procedures. Future research should focus on establishing standardized protocols for manual therapy and massage, which is one of the major limitations. To ensure a high level of evidence, research studies with large sample sizes, long follow-up periods and methodologically complete are needed. (shrink)

Genetics is increasingly defining how we understand health and disease, affecting for some, their understanding of inherited disease, and the meaning of medical genetic information. When interpretations of hereditary conditions are determined, partly, by one’s familial experience of heritable characteristics and partly by various other lived experiences, the meaning of genetics becomes highly personal. Through descriptions of stocks of knowledge, this paper describes findings from a qualitative study with a cohort of Black and Asian women with family and personal histories (...) of cancer, about their interpretations of their genetic tests. We describe their interpretations as shaped by different experiences of biomedical practice as well as familial experiences of cancer and genetic testing; and we introduce a metaphor of “moving within a landscape,” to show how those interpretations were created and influenced by various sources of knowledge and life experiences. (shrink)

In 21st century America, personhood is under daily assault, sometimes with dire consequences. Scientist, ethicist, and ordained minister Craig C. Malbon encourages the reader to consider such assaults on personhood endured by victims of abortion, ageism, Alzheimer's disease, drug addiction, mental and physical disabilities, gender, gender orientation, racism, sexual preference, identity politics, and our will-to-power over the "other." In exploring personhood status, Malbon poses difficult questions for us. Is personhood assigned as all-or-nothing, or is it a sliding scale based upon (...) criteria arbitrarily aimed at our vulnerabilities? Does the voiceless embryo and fetus have advocates who can speak to the moral question of abortion? Is the personhood of an economically insecure pregnant woman degraded to the point where lack of access to early termination of pregnancy results in "coercive childbearing?" Does being a member of the LGBTQI+ community target one for assaults on personhood, to the extreme of being killed? In delving into the biology and psychology of assaults of "self" upon the "other," Malbon sees powerful linkages of everyday assaults on personhood to darker, profound "original sins" that are foundational to the rise of the American empire, i.e., assaults on the indigenous Native Americans and assaults derivative to the institution of slavery upon Africans, African Americans, and their descendants. (shrink)

Emotion-processing impairment represents a risk factor for the development of somatic illness, affecting negatively both health-related quality of life and disease management in several chronic diseases. The present pilot study aims at investigating the associations between alexithymia and depression, anxiety, and HRQoL in patients with Hashimoto’s thyroiditis ; examining the association between these three psychological conditions together with HRQoL, and thyroid autoantibodies status as well as thyroid echotexture in patients with HT; and comparing the intensity of all these clinical psychological (...) features in patients with HT versus controls. Twenty-one patients with serologically or ultrasonographically verified HT and 16 controls with non-toxic goiter or postsurgical hypothyroidism were recruited for this study. Serum thyrotropin and free thyroxine, as well as thyroid autoantibodies, were assayed. Alexithymia, depression, anxiety, and HRQoL were assessed with Toronto Alexithymia Scale; Beck Depression Inventory, second edition; Hamilton Anxiety Rating Scale; and Health Survey Short-Form 36, respectively. A negative relationship between the difficulty to describe feelings and the cognitive component of depression was found. Besides, patients with seronegative HT had lower somatic anxiety than patients with HT who tested positive. Besides, no statistically significant difference was found between patients with HT and controls with regard to somatic anxiety. The present study suggests the relevance of alexithymia in patients suffering from HT, which may be intertwined with a possible state of underreported depression that is mainly expressed through physical complaints. Promoting the capability to describe and communicate feelings could contribute to psychological elaboration and coping with the disease and, consequently, to the improvement of self-management and perceived HRQoL. (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)

Chronic kidney failure is a serious somatic disease. Addressing the issue of living with a chronic disease means fully considering the patients’ entourage, their families, and those close to them, especially their children and spouses.Objectives: The present paper focuses on the couple’s psychological experience when one of them suffers from a chronic disease, in this instance kidney disease. In particular, how is the spouse affected by the treatment provided? The aim is not only to see how care for sick people (...) can be improved, but also, more specifically, how relatives and especially partners can receive attention.Methodology: A qualitative approach is not only adopted, being based on the psychotherapeutic follow-up of the partners of patients with chronic kidney disease, but also of the patients themselves, addressing the matter of their life as a couple. Three couples were considered, and two case studies are presented here. The issues that cut across these different situations are examined.Results and Discussion: Some couples show considerable resourcefulness. However, over the years, that capacity for adaptation and inventiveness can also be interrupted by the periods of greater suffering and even despair, especially when the somatic pathology becomes chronic. Many spouses talk about how living with a sick partner weighs down on them, causing severe fatigue. Some aspects of the illness can also become traumatic. The disease regularly disrupts the daily life of the couple and the family. This leads to a reworking of family relations. Each couple has its own history with the condition. As it emerges, it can disrupt the bonds of filiation, especially when the illness is hereditary. Making psychological care more accessible to the partners involved constitutes a major challenge for our hospital care systems. (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...

In a searching analysis, Radden elucidates key problems in justifying coercive treatment in anorexia nervosa despite a common intuition that it should have a place. Indeed, AN, perhaps more than any other condition, challenges the validity of a test purporting to provide a justification. Our generally accepted model for involuntary treatment is based on impaired decision-making capacity and "best interests." A treatment refusal by a person with "capacity" is to be respected, regardless of the consequences. (I exclude here the criteria (...) under conventional mental health law—a diagnosis of a "mental disorder" coupled with a risk of harm to self or to others—because they discriminate against people with a... (shrink)