Scholarship in neuroethics and related disciplines has long reflected on the value of different conceptual models of disability and impairment. While this theoretical work is valuable, centering the voices of people with mental health conditions in neuroethics research can help us better understand how such models apply in everyday people’s lives. Drawing on qualitative data from a study on mental health peer providers’ lived experiences of recovery, this paper will demonstrate that peers borrow from both a neurodiversity (...) framework and the medical model of disability, though their feelings toward the two models were often complex and ambivalent. These findings advance neuroethics by indicating that future research and clinical practice should take a nuanced approach to responding to the needs of people with mental health conditions and turn to peers as experts, honoring their values and recognizing both the promise and pitfalls of living with a mental health condition. (shrink)

The Coronavirus Disease 2019 pandemic has broadly impacted university students’ customary life, resulting in remarkable levels of stress and psychological suffering. Although the acute phase of the crisis has been overcome, it does not imply that perceived stress related to the risk of contagion and to the changes in the relational life experienced over more than 1 year of the pandemic will promptly and abruptly decrease. This study aims at comparing university students’ psychological health conditions before and during (...) the COVID-19 pandemic, but also at providing information on how psychological health conditions evolved over the 1 year of the pandemic. We analyzed data from a repeated cross-sectional survey on different samples of university students before the pandemic in 2017 and during the pandemic. During the pandemic, data were collected at three stages. The COVID-19 Student Stress Questionnaire and the Symptom-Checklist-90-Revised were used to assess, respectively, COVID-19-related stressors and the presence of psychological symptoms. Psychological health conditions were compared at baseline and during the pandemic, whereas both psychological health conditions and perceived levels of COVID-19-related stressors were compared over the three pandemic stages. In addition, Logistic Regression was used to explore the associations between COVID-19-related stressors and psychological symptoms. Findings revealed a significant increase in symptoms of Depression, Phobic-Anxiety, Obsessive-Compulsive, and Psychoticism from pre to during the pandemic. Perceived levels of COVID-19-related stress and specific psychological symptoms significantly increased as the pandemic was progressing. COVID-19-related stressors emerged as significantly associated with several psychopathological symptoms. Findings are discussed with the aim of providing tailored interventions to prevent mental disease and promote psychological adjustment in this specific stage of transition within this exceptional global emergency. (shrink)

It is important to note that certain mental health disorders are classified as rare conditions, and they have their own ‘cultural concepts of distress’ as defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM 5). Cultural concepts of distress are a recent attempt to understand psychological distress influenced by culture, separate from biomedical diagnoses that require equal attention and support for individuals and their families, both physically and emotionally. [1].

In recent decades there has been a significant increase in community rehabilitation programs for people with mental health conditions. One such nationwide programs is Amitim in Israel whose mission is to foster the psychosocial rehabilitation of people with mental health conditions in the community. Amitim’s flagship program consists of arts-based groups that integrate participants with mental health conditions and non-clinical community members. To better understand the experiences of participants in these arts-based groups, five focus (...) groups were conducted with participants from 15 integrated arts-based groups. In total, 17 people with mental health conditions and 21 non-clinical community members were interviewed for this qualitative study. Three main themes emerged from the thematic analysis: creation and expression through the arts promote well-being, self-disclosure in a safe space encourages a sense of belonging, and “we are all in the same boat.” The participants underscored the role of creation and expression through the arts in facilitating emotional expression, self-discovery, interpersonal communication, and spiritual elevation. The findings suggest that the facilitators should instill a sense of equality by enabling intergroup acquaintances without labeling participants’ mental health status. Integrated arts-based groups should be accompanied by a mental health professional who can contain and work through complex emotional situations when needed. Arts therapists who specialize in both arts and mental health are particularly suitable for this role. Overall, the interviewees reported that participation in the integrated arts-based groups positively impacted their personal recovery processes by providing a corrective experience of equality as well as enhancing a sense of belonging to the community and social relationships. The participants also reported being empowered by the final artistic event that not only enhanced their sense of visibility, competence, and aspirations for future development in personal, interpersonal, and artistic realms, but also helped to combat both self- and public stigma. (shrink)

The discourse surrounding mental health conditions (MHCs) can fluctuate between versions of the medical model, which views such conditions as pathologies requiring clinical intervention, and the ne...

Person‐specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self‐determination method with people with various long‐term health conditions. It explains the mechanisms of mobilizing relational capacity by including person‐specific evidence in shared decision‐making. Person‐specific self‐insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self‐management challenges. This step paved the way for sharing these (...) insights and challenges in a relationship with a supportive health professional, who could then rely on person‐specific evidence instead of assumptions or a narrow disease perspective for shared decision‐making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person‐specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self‐insights in daily life with other people, decreasing loneliness they experienced in self‐management. Relational capacity, the core of the theory, is mobilized in both people with long‐term health conditions and healthcare professionals. Further research on person‐specific evidence and relational capacity in healthcare is recommended. (shrink)

An evaluation of a health condition-specific hope scale adapted from the more general dispositional Hope Scale (Snyder et al., 1991) is provided. Participants (N = 202) with a rare, debilitating, and potentially stigmatising health condition were recruited from readers of the Anal Fissure Self Help Page. Data were gathered anonymously using an online survey linked to the website. Consistent with hope theory, this new measure yielded a pathways factor (perceived capacity to find ways to achieve desired goals) and (...) an agency factor (perceived motivation to pursue goals energetically). Respondents with stronger pathways thoughts reported greater benefits from website information for understanding and generating strategies for managing anal fissures. Stronger agency beliefs were related to more frequent website visits, more rereading of first-hand patient accounts, and shorter duration of fissure symptoms. Results offer preliminary support for validity of this scale and for using web-based methodologies to study conditions, such as anal fissure. (shrink)

BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a (...) cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive. (shrink)

Background: Patients prescribed with medication that treats mental health conditions benefit the most compared to those prescribed with other types of medication. However, they are also the most difficult to adhere. The development of mobile health (mHealth) applications (‘apps’) to help patients monitor their adherence is fast growing but with limited evidence on their efficacy. There is no evidence on the content of these apps for patients taking psychotropic medication. The aim of this study is to identify (...) and evaluate the aims and functioning of available apps that are aiming to help and educate patients to adhere to medication that treats mental health conditions. Method: Three platform descriptions (Apple, Google and Microsoft) were searched between October 2015 and February 2016. Included apps need to focus on adherence to medication that treats mental health conditions and use at least a reinforcement strategy. Descriptive information was extracted and apps evaluated on a number of assessment criteria using content analysis. Results: Sixteen apps were identified. All apps included self-monitoring properties like reminders and psycho-educational properties like mood logs. It was unclear how the latter were used or how adherence was measured. Major barriers to medication adherence like patients’ illness and medication beliefs and attitudes were not considered nor where information to patients about mediation side effects. Very few apps were tailored and none was developed based on established theories explaining the processes for successful medication adherence like cognitions and beliefs. Reported information on app development and validation was poor. Discussion: A variety of apps with different properties that tackle both intentional and unintentional non-adherence from a different perspective are identified. An evidence-based approach and co-creation with patients is needed. This will ensure that the apps increase the possibility to impact on non-adherence. Theories like social cognition models can be useful in ensuring that patients’ education, motivation, skills, beliefs and type of adherence are taken into consideration when developing the apps. Findings from this study can help clinicians and patients make informed choices and pursue policy-makers to integrate evidence when developing future apps. Quality-assurance tools are needed to ensure the apps are systematically evaluated. (shrink)

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

A subset of people with severe mental health conditions feels they are on the verge of losing control, even in the absence of external threats or triggers. Some go to extreme ends to avoid affective arousal and associated expectations of a possible, impending catastrophe. We have learned about such phenomenological, emotional challenges in a group of individuals with severe, composite mental health problems and psychosocial disabilities. These individuals have had long treatment histories in the mental health (...) care system. They have been encountered at a specialized inpatient ward offering exposure-based therapy that aims at restoring self-regulation and recovery. We describe the phenomenology of anxiety and fear presented by these service users, a fear we have coined existential catastrophe anxiety. We also suggest a set of underlying, interacting, psychological mechanisms that may give rise to ECa, before comparing ECa with three other constructs previously described in the literature—annihilation anxiety, ontological insecurity, and affect phobia. These comparisons show several similarities, but also unique qualities with ECa and its suggested underlying mechanisms. The conceptualization of ECa may aid clinicians in addressing extreme experiential turmoil and engage service users in empowering therapeutic projects. (shrink)

The recent increased prevalence of diseases related to unhealthy lifestyles raises difficulties for healthcare insurance systems traditionally based on the principles of risk-management, solidarity, and selective altruism: since these diseases are, to some extent, predictable and avoidable, patients seem to bear some responsibility for their condition and may not deserve full access to social medical services. Here, we investigate with objective criteria to what extent it is warranted to hold patients responsible for their illness and to sanction them accordingly. We (...) ground our analysis on a series of minimal conditions for ‘practical’ and for ‘moral’ responsibility attribution. By applying these criteria consistently, we highlight that individual responsibility applies to risk-taking life choices rather than stigmatized sickness. We explain that responsibility is a matter of degree, that it varies across life-history, and can be affected by factors beyond the patients’ grasp. We point out that scientific knowledge about the effect of these factors generates responsibilities for other parties such as public health agencies and private industry. The upshot of our analysis is that health policies targeting the ‘liable’ undeserving sick are mostly unwarranted, and tend to increase unequal treatment of already vulnerable groups: the unlucky sick. (shrink)

While the term and concept of neurodiversity emerged within autistic communities, it has never been limited to autism. As Knopes reviews, neurodiversity scholars have identified meaningful overlaps...

BackgroundThe relatively young and inexperienced healthcare professionals in Mongolia faced with an unprecedent service demand in response to the COVID-19 pandemic. Due to the small size of the healthcare workforce the Mongolian Health Ministry had no choice but to mandate continuous and long workhours from the healthcare workforce. Many of the healthcare professionals exhibited signs and symptoms of mental health disorders. This study aimed to discern the prevalence various mental health concerns, i.e., depression, anxiety and stress, insomnia, (...) and to discern the factors that increased susceptibility to mental health disorders among frontline healthcare professionals providing healthcare services for COVID-19 patients in Mongolia.MethodsA Cross-sectional research design was implemented. We collected data from 965 healthcare professional, randomly selected from 18 government hospitals, in four regions of Mongolia. Data were collected using the Depression Anxiety Stress-21, the General Self-Efficacy Scale, and the Insomnia Severity Index instruments. We constructed the scale of Pandemic Response Symptoms which captured stress, depression, and anxiety. Data were analyzed using descriptive statistics, Kruskal–Wallis statistical test and multinominal logistic regression analysis.ResultsPrevalence of depression, anxiety, and stress was documented among Mongolian healthcare professionals. Perception of self-efficacy reduced susceptibility to PaReSy either at mild/moderate or severe/extremely severe level. Within each stratum of insomnia, the risk of experiencing PaReSy increased almost linearly both in the category of mild/moderate PaReSy and in the category of severe/extremely severe PaReSy.ConclusionImproving self-efficacy and sleeping quality can assist healthcare workers to manage depression, anxiety, and stress. Findings provide important evidence to implement measures and strategies to assist healthcare professionals in low- and middle-income countries to constructively address their mental health concerns and needs. (shrink)

There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts. When support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited (...) and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes ; limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management. We suggest that a focus on enabling people to live well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can accommodate the range of what matters to people for living well, help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice. (shrink)

Source [1] Andrew E. P. Mitchell, Federica Galli, Sondra Butterworth. (2023). Editorial: Equality, diversity and inclusive research for diverse rare disease communities. Front. Psychol., vol. 14. doi:10.3389/fpsyg.2023.1285774. "It is also important to recognize that certain mental health disorders are classified as rare conditions and have their own cultural concepts of distress, as defined in the DSM-5 (American Psychiatric Association, 2013)" and require “equal attention and support for individuals and their families, both physically and emotionally”. [1].

Many international declarations state that human beings have a human right to health care. However, is there a human right to health care? What grounds this right, and who has the corresponding duties to promote this right? Elsewhere, I have argued that human beings have human rights to the fundamental conditions for pursuing a good life. Drawing on this fundamental conditions approach of human rights, I offer a novel way of grounding a human right to (...) class='Hi'>health care. (shrink)

This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide (...) conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making. (shrink)

The circumstances of a public health emergency shape reasoning and decision-making in ways that deviate from routine circumstances, where adherence to established values, principles, and methodologies is expected. Understanding what drives these deviations is critical to assessing their ethical consequences. In this paper we describe four conditions that influence decision-making during PHEs, in particular regarding the deployment and conduct of research on experimental or novel biomedical interventions. These four conditions are politicization, urgency, uncertainty, and fear. We argue (...) that taken together these four conditions create pressure to address the most visible targets of immediate crisis events, driving emphasis on research and development of biomedical interventions. However, this emphasis raises ethical concerns regarding the extent to which attention to and investment in the underlying causes of PHEs, particularly impoverished global public health infrastructure, is diminished as a result. (shrink)

In their attention to patients of different specialties, health personnel are the most vulnerable to contagion, which has been evidenced by the COVID-19 pandemic. The working conditions or factors for biosafety practices in health personnel worldwide will make it possible to detect the necessary and less treated lines of investigation, deficiencies and to draw up lines of work for their solution. It should be noted that it is estimated that 2.78 million workers die because of occupational accidents (...) and 374 million injuries caused by work are reported, thus increasing absenteeism, the risk of contracting a disease in the workplace has become more latent and 4% of the world's GDP is occupied by diseases. The objective of this study was to analyze the evidence that exists regarding the conditioning factors for the practice of biosafety in health personnel. The methodology: where a descriptive systematic review was performed with the search of databases in Scopus selected articles from 2019 - 2023 in English and Spanish languages. The results indicate that with regard to the conditioning factors of Biosafety practice, it is evident that of the 400 articles 50 mention that it is important to know how to do, 45 mention that it is important not only the training but also the equipment for these practices to be favorable, also 31 of the articles refer to that in COVID-19 period the infections among health personnel were due to the reuse of personal protective equipment. (shrink)

Because of the development towards community care, care providers not only exchange information in a team, but increasingly also in networks. This is a challenge to confidentiality. The ethical question is how care providers can keep information about the care receiver confidential, whilst at the same time exchanging information about that care receiver in a team or network? Can shared confidentiality be extended from a team to a network? To clarify this question, the article refers to the advice of an (...) expert ethics committee in mental health care. The advice regards exchange of information in a network as a further step in enhancing collaboration among care providers. Therefore, the good and evident practice of shared confidentiality in a team can be extended to a network if the same conditions are met. First, the care providers participate in a clearly defined and identifiable team or network. Secondly, they have a shared care responsibility. Thirdly, they have a duty of confidentiality. Fourth, they dialogue with the care receiver and obtain his or her consent. Finally, they apply the filter of relevance. Hence, conditional shared confidentiality is an ethical justification for the exchange of information in a team or network. (shrink)

It is well documented that the higher the socioeconomic status (SES) of patients, the better their health and life expectancy. SES also influences the use of health services—the higher the patients' SES, the more time and specialised health services provided. This leads to the following question: should clinicians give priority to individual patients with low SES in order to enhance health equity? Some argue that equity is best preserved by physicians who remain loyal to ‘ordinary medical (...) fairness’ in non-ideal circumstances when health disparities persist; ie, doctors should allocate care according to needs only and treat everyone with equal regard by being neutral with respect to patients' SES. This paper furthers a discussion of this view by questioning how equitable needs relate to SES. To clarify, it distinguishes between four versions of ‘healthcare need’ and approaches an acceptable conceptualisation of the notion supported by Norman Daniels' theory on health equity. It concludes that doctors should remain neutral to patients' SES in cases in which several patients require the same health care. However, equitable health care requires considerations of the impact of socioeconomic factors (SEF) on patients' capacity to benefit from the care. Remaining neutral towards patients' SES in this respect does not promote equal regard. It follows that priority setting on the basis of SEF is required in fair clinical distribution of care, eg, through allocating more time to patients with low SES. In order to advance equity accurately, the concept of ordinary medical fairness should be amplified according to this clarification. (shrink)

The influential public health ethics framework proposed by Childress et al. includes five “justificatory conditions,” two of which are “necessity” and “least infringement.” While the framework points to important moral values, we argue it is redundant for it to list both necessity and least infringement because they are logically equivalent. However, it is ambiguous whether Childress et al. would endorse this view, or hold the two conditions distinct. This ambiguity has resulted in confusion in public health (...) ethics discussions citing the Childress et al. framework, as demonstrated by debate between Resnik and Wilson and Dawson. We analyse this debate to resolve these ambiguities. Finally, we argue that the necessity/least infringement principle of the Childress et al. framework applies only in cases in which only one intervention is to be implemented to achieve one specific goal. In other cases, it is not essential to require that only the least infringing intervention be implemented. (shrink)

A socialist health service in a non-socialist society may be forced to stress care and rescue rather than prevention, health maintenance or the promotion of better health and more equal health status. A socialist health service ought to be ‘integrated’. A socialist health service ought to provide universal and comprehensive care.

At workplaces where nanomaterials are produced or used, risk assessment and risk management are extremely difficult tasks since there is still limited evidence about the risks of nanomaterials. Measurement methods for nanoparticles are contested and safety standards have not yet been developed properly. To support compliance with the legal obligation of the employer to care for safe workplaces a large number of ‘soft’ regulatory tools have been proposed (e.g. codes of conduct, benchmarks, standards). However, it is not clear whether and (...) under which conditions soft regulation is complied with. This article discusses the potential advantages and drawbacks of soft regulation. It explores compliance issues when exposure measurement devices and other technology-related factors are involved. The exploration of three examples of soft regulation on occupational health and safety (a ministerial recommendation on preliminary exposure benchmarks, a nano-specific guidance of a chemical company and a public–private OHS guideline) shows that the capacity of the regulated parties to comply depends on the availability of appropriate technological devices and methods, technical expertise and other resources. When technological prerequisites are met, compliance is likely to increase. (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)

IntroductionElements mark the reality of reading the female body in symbolic constructions and social symbols in the exercise of their reproductive health. The study aims to identify elements that characterize the female condition while analyzing the reproductive health of Brazilian and French women.Materials and MethodsA qualitative, multicenter, international study was conducted in Brazil and in France between 2016 and 2019. Data were produced through the use of semi-structured scripts. Focus group discussions and individual interviews were conducted with women (...) who gave birth, hetero-female couples who lived the experience of gestation and birth of a baby, and professionals of maternal and childcare services or members of the associations concerned with the health of mothers and babies. It was guided by the theoretical-methodological framework of institutional analysis in line with the French Institutional Socioclinics.ResultsSexual and reproductive health in the realities researched in Brazil and France are sometimes close and sometimes far apart. In what involves the Brazilian health system, abortion is criminalized and often performed illegally. Furthermore, pregnancy, childbirth, and the postpartum period are highly medicalized. In addition, childbirth is not assured as an experience for a woman and her family. This aspect is confirmed by high numbers of cesarean sections performed or by maternal and infant mortality indicators. The French health system prioritizes vaginal deliveries and seems to assure more autonomy to women, but at the same time, it is worn out by the logic of profit, the efficiency of actions, and the rationalization of practices. In association with these, there are other intrinsic elements in the functioning of the institution that delineates the format of each country: notion of women's rights, violence against women, and discussion regarding the oppression markers of race, gender, sexuality, and social class.ConclusionsBoth countries reveal aspects related to the social role of women's bodies. The established logic reflects in the decision to have children, motherhood, women's autonomy over their own bodies, and in the core values linked to the termination of pregnancy and the professional practices developed in prenatal care, childbirth, and postpartum. (shrink)

In this paper, I sound a warning note about the medicalization of risk conditions such as high cholesterol, especially in a health care climate of resource scarcity.

Definition of the problemStaff and patients in institutions of organized health care experience and express a variety of adverse conditions of these organizations. Within a theoretical framework of institutional pathology we can explain some of these “miserable conditions” as effects of the activities of organizations belonging to the political system (health policy) and to the economic system (health economy). Clinical ethics committees (CECs) cannot effectively handle such adversities or even address them properly. Standard organizational ethics (...) can address them but cannot handle them effectively.ArgumentsI propose to strengthen organizational ethics by a theory of institutional pathology. Basic nosological distinctions such as disease, illness and sickness, whose primary reference is to biological organisms and persons, can be analogically extended to socially constituted entities (e.g. hospitals) in terms of functional deficiency, miserable conditions, and need for reform of such entities. A very promising focus for analysis are organizational disorders of responsibility allocation. This group of institutional pathological disorders engenders, amongst other kinds of miserable conditions, specifically morally relevant miserable conditions.ConclusionThe institutional pathology paradigm, oriented to concrete institutions and organizations, can help “clinical” organizational ethics to considerably expand, in theoretical ethics as well as in ethically guided practice e.g. for members of CECs and organizational ethics advisors, the capacities for observing, evaluating and, if necessary, amending disturbed relations of responsibility. (shrink)

American bioethics has served as a safety net for the rich and powerful, often failing to protect minorities and the economically disadvantaged. For example, minorities and the economically disadvantaged are often unduly influenced into participating in clinical trials that promise monetary gain or access to health care. This is a violation of the bioethical principle of “respect for persons,” which requires that informed consent for participation in clinical trials is voluntary and free of undue influence. Promises of access to (...) health care invalidate the voluntariness of informed consent not only because it unduly induces minorities and the economically disadvantaged to participate in clinical trials to obtain access to potentially life saving health care, but it is also manipulative because some times the clinical trial is conducted by the very institutions that are denying minorities and the economically disadvantaged access to health care. To measure whether consent is voluntary and free of undue influence, federal agencies should require researchers to use the Vulnerability and Equity Impact Assessment tool, which I have created based on the Health Equity Impact Assessment tool, to determine whether minorities and the economically disadvantaged are being unduly influenced into participating in clinical trials in violation of the “respect for persons” principle. (shrink)

Objectives: To present an analysis of “futility” that is useful in the clinical setting.Design: Literature review.Material and methods: According to Medline more than 750 articles have been published about medical futility. Three criteria singled out 43 of them. The authors' opinions about futility were analysed using the scheme: “If certain conditions are satisfied, then a particular measure is futile” and “If a particular measure is futile, then certain moral consequences are implied”.Results: Regarding conditions, most authors stated that judgments (...) about futility should be made by physicians. The measure was usually some kind of medical treatment, and the goals related to quality of life, physiological improvement, or prolongation of life. The probability of success in reaching the goal was in most cases described in semiquantitative terms. Regarding consequences, the authors stated that health care professionals may withhold or withdraw a futile measure, most often after a dialogue with the patient , but sometimes without informing the patient , or with one-way information . Over time more and more articles recommend that the patient should be involved in joint decision making. Based on this literature review a clinical model was developed.Conclusions: The model, requiring that conditions and consequences should be made explicit, may, in “futility situations”, facilitate both the collection of the necessary information and make the moral implications visible. It also makes communication about measures considered to be futile possible without using such ambiguous terms as “futile”. (shrink)

The purpose of this text is to present the different approaches and mechanisms of a training engineering based on the current analysis of the work of the "clinic of activity". Called clinical didactic engineering of activity, this approach is based on the principles of the clinic of activity to design and implement professional training systems and thus solve a recurring question that all professional training engineers come up against, which is that of transposing work activity, without distorting it. Illustrated by (...) two examples in health and services, this text proposes a first structuring of such engineering. (shrink)

The Millennium Development Goal (MDG) 5 A states that the maternal mortality ratio has to be reduced to three-quarters between 1990 and 2015. The target for India is a maternal mortality ratio of 109/100,000 live births. The Janani Suraksha Yojna (JSY) (Maternal Protection Scheme) is a centrally sponsored conditional cash transfer scheme to promote institutional deliveries and thus ensure safe delivery and reduce maternal mortality. The JSY scheme and its various evaluations were reviewed. The Tannahill’s ethical framework was applied to (...) the JSY and analyzed. Evaluations have shown that the JSY has significantly increased institutional deliveries. The public health system is not fully geared up for delivering good quality maternal health services. Thus encouraging women to go to them violates the principle of doing good. There are several barriers for availing the scheme. Procuring the certificates to meet eligibility can be difficult. The women do not have power over the cash incentive. There are large inequities in access to the JSY scheme based on socioeconomic status, caste and education. The accountability mechanisms for the scheme are weak at the grassroots level. Without an overall improvement in health system and awareness among women, the JSY cannot be said to empower the women in a sustainable way. In order, that the increases in institutional deliveries due to JSY are more than just a Hawthorne effect, which is a change in behavior just due to the fact that the population is being closely observed and intervened, there is a need to bridge the ethical gaps in the program to make it an empowering, sustainable, accountable and just one. (shrink)

In this essay I ask the reader to consider the “end of life” as a life stage, rather than as a health state. At one end of the life course is childhood and at the other end is elderhood. The basic inter-generational social compact in most societies is that working adults take care of their children and their parents, and count on their children to do the same for them. In developed countries, these obligations are met in part through (...) government programs, with taxpayers funding significant portions of education, health care, and income support. (shrink)

This paper experimentally investigates the altruistic behavior of physicians and whether this behavior is affected by payment system and uncertainty in health outcome. Subjects in the experiment take on the role of physicians and decide on the provision of medical care for different types of patients, who are identical in all respects other than the degree to which a given level of medical treatment affects their health. We investigate physician altruism from the perspective of ethical principles, by categorizing (...) physicians according to how well their treatment decisions align with different principles for priority setting. The experiment shows that many physicians are altruistic toward their patients but also that the degree of altruism varies across patients with different medical needs. We find a strong effect of payment system that is overall unaffected by the introduction of risk and ambiguity in patients health outcomes. There is, however, substantial heterogeneity across individuals, in particular under the capitation payment system where physicians responses to the introduction of uncertainty in patient health are modulated by their own generic risk and ambiguity preferences. (shrink)

In this critical commentary, a set of ethical considerations of relevance to the (currently contested) interpretation of irremediability for medical assistance in dying (MAiD) in circumstances where the sole-underlying medical condition is a mental health disorder is explored and analyzed. Based on the application of an ethics lens, a practical description of irremediability is proposed for intended use as guidance by Canadian mental health care clinicians, MAiD assessors and providers, and provincial/territorial professional regulatory authorities.

General health conditions are related to a great number of factors, including the socio-historical ones. As human beings are part of the social field, personality is also affected by them. Due to this, the main Ethics Codes of psychology, all around the world, remark in their preambles the importance of social responsibility in the practice and training in psychology. Argentina is confronted with several social problems that have severely influenced people’s mental health. In countries like Argentina, the (...) ethical practice of psychology should respect what is explicitly stated in ethic codes about psychologists’ social responsibility, and psychologists should get more involved in promoting this issue in educational training and in national health policies. (shrink)

Suppose that John has a moral obligation to stop smoking given that smoking is dangerous to his health. Suppose further that smoking is dangerous to his health. Does it follow that John has a moral obligation to stop smoking? Although intuition inclines one to answer in the affirmative, recent developments in deontic logic apparently call this inference into question. The issue at hand is whether unconditional obligations are detachable from conditional obligations on the basis of purely factual considerations. (...) I believe that they are not. In the course of arguing for this position I defend a novel restricted rule of detachment which is constructed out of both factual and normative components. (shrink)

Skin conditions such as eczema and psoriasis are relatively prevalent health concerns in children, adolescents and young adults. Experiences of these dermatology diagnoses in adolescence have hitherto not been the focus of research, perhaps owing to assumptions that these diagnoses are not particularly impactful or intricate processes, events or labels. We draw on a thematic secondary analysis of in-depth interviews with 42 adolescents and young people living in the United Kingdom and, influenced by the sociologies of diagnosis and (...) time, highlight the psychological, emotional, social and temporal complexities involved in their diagnosis experiences. Firstly, we describe how participants remembered, re- and co-constructed their diagnosis experiences during the interview. Secondly, we explore the pace and rhythm of diagnosis, including mis-diagnoses, highlighting the jarring potential for adolescents on being diagnosed, even for conditions typically deemed minor. Thirdly, we consider the ways in which these diagnoses have the capacity to reformulate notions of past, present and future, including projecting into imagined futures and reinterpreting past bodily sensations. Finally, we examine how memories about and the meaning of diagnosis are revisited, revised and potentially replaced as a child or adolescent grows older, and increases their management of their condition and encounters with healthcare professionals. In unsettling an assumption that diagnosis experiences for adolescents of common skin conditions is unproblematic or straightforward, our qualitative analysis critically engages with and contribute to tenets of health research that are of interest to quantitative and qualitative researchers, clinicians and patients. (shrink)