During the first half of the twentieth century, the mining industry in Britain was subject to recurrent disputes about the risk to miners’ lungs from coal dust, moderated by governmental, industrial, medical and mining bodies. In this environment, precise measurements offered a way to present uncontested objective knowledge. By accessing primary source material from the National Archives, the South Wales Miners Library and the University of Bristol's Special Collections, I demonstrate the importance that the British Medical Research Council (MRC) attached (...) to standardized instrumental measures as proof of objectivity, and explore the conflict between objective and subjective measures of health. Examination of the MRC's use of spirometry in their investigation of pneumoconiosis (miner's lung) from 1936 to 1945 will shed light on this conflict and illuminate the politics inherent in attempts to quantify disability and categorize standards of health. (shrink)

The COVID-19 pandemic’s effects on mental health interact with preexisting health risks and disparities to impact varying populations differently. This study explored the relationship between demographic variables, distress and mental health, and vulnerability factors for COVID-19. An online cross-sectional study was conducted from 18 June to 17 July 2020, reflecting the impact of early phase COVID-19 pandemic and related shelter-in-place measures in the United States. Participants were adults residing in the United States, with substantial subsamples of American (...) Indian, Asian American, African-American, and Hispanic and/or Latinx participants, as well as people with disabilities and sexual minorities. Outcomes measured were depression, hopelessness, somatic complaints, anxiety-related disorders, locus of control, and a novel measure of pandemic-related distress. Data were analyzed using analyses of covariance, chi-square test, and correlation coefficients. Generally, younger individuals, and those with less financial power—across all identities—suffered more distress. When controlling for age, lower financial power was associated with higher scores on the Center for Epidemiologic Studies Depression Scale-Revised, Beck Hopelessness Scale, Patient Health Questionnaire-15, Screen for Child Anxiety Related Emotional Disorders for Adults Panic Disorder, SCARED-A generalized anxiety disorder, SCARED-A obsessive–compulsive disorder, and the COVID-19 Pandemic Distress restriction/disconnection scale. In addition, disparities were found, in general, for marginalized identities by gender, sexual orientation, and disability status. Importantly, each ethnicity subsample showed a unique pattern of relationships between COVID-19 risk variables and mental health symptoms. The results support the hypothesis that any pandemic may amplify preexisting social and financial disparities. Overall, interventions at the clinical, governmental, or health equity level should take into consideration the needs of vulnerable groups. (shrink)

Quality-Adjusted Life Years (QALYs) and Disability-Adjusted Life Years (DALYs) are two of the most commonly used health measures to determine resource prioritization and the population burden of disease, respectively. There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or (...) class='Hi'>health levels of individuals. But even if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality. In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits,1for disregarding fair chances in favor of utility maximization,2and for raising problems when applied in the context of variable population size.3Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people.4Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper (...) offers and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

The COVID-19 pandemic which started in China in 2019, was originally described as a public health emergency of intercontinental concern by the World Health Organization (WHO) in January 2020. Due to its speedy rate of spread, the WHO then declared it a pandemic after 6 weeks. The global spread of COVID-19 has been attributed to the high mobility between and within countries. Having noted the wide spread of the COVID-19 pandemic, almost every country affected, developed strict and restrictive (...) public health measures to control the spread of the virus. Such measures included restrictions on country borders and social gatherings. Hence, the main purpose of the paper was to explore the impact of the COVID-19 crisis in relation to religion, health and poverty in Harare urban communities as well as determining solutions to the impact of the COVID-19 pandemic on those sectors. The research methodology was qualitative in nature. Primary data were collected through in-depth telephone interviews and online open-ended questionnaires. Purposive sampling was used to select the study participants. The findings showed that the COVID-19 pandemic triggered and exposed the inequalities in health. The pandemic also had a strong impact on religious activities and it exacerbated poverty levels as well. Those who had all the access to medication, food and vaccinations during the height of COVID-19 may not fully appreciate the impact that poverty coupled with pandemics left on their communities both religiously and socially. Malnutrition, hunger and sickness were the order of the day among the poor.Contribution: The conclusion was that COVID-19 negatively impacted on the health, religious and social sectors. Therefore, it is critical to maintain preventive and curative services, especially for the most vulnerable populations such as children, older persons, and people with disabilities. (shrink)

The aim of this paper is to familiarize the reader with the concept of psychological energy, and the role it plays in deepening our understanding of psychosocial adaptation to traumatic life events and, more pointedly, the onset of chronic illness and disability. In order to implement this aim, the following steps were undertaken: First, a brief historical review of the nature of energy, force and action, as traditionally conceived in the field of physics, is provided. Second, an overview of (...) PE is presented, with a shared emphasis on both its historical underpinnings and its present conceptualizations in the fields of social, health and rehabilitation psychology. Particular emphasis is placed upon applications of PE in the domains of adaptation to stress, trauma and CID onset. Third, reviewed are measuring instruments that have been traditionally applied to the assessment of the nature, content and magnitude of PE and its dynamics. Finally, new perspectives are offered on the dimensional structure, processes and dynamics, assumed to undergird PE, its underlying conceptual similarities to physical energy, and its potential and deeper link to the process of psychosocial adaptation in the aftermath of experiencing trauma and CID. (shrink)

Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model (...) of health and disability, a model which conflates amputation with impairment, and impairment with a disability. This article challenges the prima facie harms assumed to be inherent in limb amputation and argues in favour of a potential treatment option for those with BIID. To do this, it employs the social model of disability as a means to separate the concept of impairment and disability and thereby separate the acute and chronic harms of the practice of therapeutic healthy-limb amputation. It will then argue that provided sufficient measures are put in place to ensure that those with atypical bodily constructions are not disadvantaged, the chronic harms of elective amputation would cease to be. (shrink)

Disability Justice in Public Health Emergencies is the first book to highlight contributions from critical disability scholarship to the fields of public health ethics and disaster ethics. It takes up such contributions with the aim of charting a path forward for clinicians, bioethicists, public health experts, and anyone involved in emergency planning to better care for disabled people—and thereby for all people—in the future. Across 11 chapters, the contributors detail how existing public health emergency (...) responses have failed and still fail to address the multi-faceted needs of disabled people. They analyze complications in the context of epidemic and pandemic disease and emphasize that vulnerabilities imposed upon disabled people track and foster patterns of racial and class domination. -/- The central claim of the volume is that the ethical and political insights of disability theory and activism provide key resources for equitable disaster planning for all. The volume builds upon the existing efforts of disability communities to articulate emergency planning priorities and response measures that take into account the large body of qualitative and quantitative research on disabled people’s health, needs, and experiences. It is only by listening to disabled people’s voices that we will all fare better in future public health emergencies. (shrink)

Summary measures of health, such as the quality-adjusted life year and disability-adjusted life year, have long been known to incorporate a number of value choices. In this paper, though, I show that the value choices in the construction of such measures extend far beyond what is generally recognized. In showing this, I hope both to improve the understanding of those measures by epidemiologists, health economists and policy-makers, and also to contribute to the general debate about the extent (...) to which such measures should be adjusted to reflect ethical values. (shrink)

The application of human right frameworks is an increasingly important part of efforts to accelerate progress in global mental health. Much of this has been driven by several influential legal and policy instruments, most notably the United Nations’ Convention on the Rights of Persons with Disabilities, as well as the World Health Organization’s QualityRights Tool Kit and Mental Health Action Plan. Despite these significant developments, however, much more needs to be done to prevent human rights violations. This (...) chapter focuses on a critical component of this broader challenge, which is the question of how best to regulate and reduce the use of coercive measures. The recent literature on coercion in psychiatry – which addresses involuntary commitment, seclusion, restraint, and forced medication – represents a useful resource that can help guide tractable solutions in global mental health. These issues are evaluated from the perspective of global health governance, and several general recommendations are made in order to improve monitoring and enforcement, provide guidance for domestic legislative reform, and strengthen health systems. (shrink)

This book brings together a team of leading theorists to address the question 'What is the right measure of justice?' Some contributors, following Amartya Sen and Martha Nussbaum, argue that we should focus on capabilities, or what people are able to do and to be. Others, following John Rawls, argue for focussing on social primary goods, the goods which society produces and which people can use. Still others see both views as incomplete and complementary to one another. Their essays evaluate (...) the two approaches in the light of particular issues of social justice - education, health policy, disability, children, gender justice - and the volume concludes with an essay by Amartya Sen, who originated the capabilities approach. (shrink)

The current public health crisis has exposed deep cracks in social equality and justice for marginalised and vulnerable communities around the world. The reported rise in the number of ‘do not resuscitate’ orders being imposed on people with disabilities has caused particular concerns from a human rights perspective. While the evidence of this is contested, this article will consider the human rights implications at stake and the dangers associated with using ‘quality of life’ measures as determinant of care in (...) medical decision-making and triage assessments. (shrink)

Elizabeth Barnes’ Health Problems addresses a thicket of philosophical problems – what health is, why it matters, and how to measure it. It argues all existing accounts of health are unsatisfactory...

This book brings together a team of leading theorists to address the question 'What is the right measure of justice?' Some contributors, following Amartya Sen and Martha Nussbaum, argue that we should focus on capabilities, or what people are able to do and to be. Others, following John Rawls, argue for focussing on social primary goods, the goods which society produces and which people can use. Still others see both views as incomplete and complementary to one another. Their essays evaluate (...) the two approaches in the light of particular issues of social justice - education, health policy, disability, children, gender justice - and the volume concludes with an essay by Amartya Sen, who originated the capabilities approach. (shrink)

This project focuses on the extent to which disability insurers should be allowed to use genetic information in underwriting and rate-setting, but this subject cannot be completely isolated from the related questions of whether life and health insurers should also have this discretion. Federal and state laws place significant restrictions on insurers’ use of genetic information in health insurance, but regulation of such use in life and disability insurance is considerably more modest. This essay examines the (...) reasons for this disparity and discusses the implications for future proposals to regulate disability insurers’ use of genetic information in underwriting and rate-setting. The thesis is relatively simple: Communitarian values are stronger in health insurance than in life and disability insurance. Accordingly, the public is likely to acquiesce to insurers’ insistence that they be allowed to make distinctions among insureds in disability insurance that would not be tolerated in health insurance. (shrink)

This research study aimed to explore the relationship between language functioning, cognitive decline, and functional independence in elderly individuals with disabilities. A cross-sectional research design was employed, and data were collected from a sample of 120 elderly participants. Language functioning was assessed using the Boston Diagnostic Aphasia Examination (BDAE), cognitive decline was measured using the Mini-Mental State Examination (MMSE), and functional independence was evaluated using the Activities of Daily Living (ADL) scale. Correlation analyses were conducted to examine the associations between (...) these variables. The results revealed a significant negative correlation between language functioning and cognitive decline (r = -0.45**, p < 0.01), indicating that language impairments often co-occur with declines in other cognitive domains. A significant positive correlation was observed between language functioning and functional independence (r = 0.60**, p < 0.01), highlighting the importance of effective communication in maintaining autonomy in daily living activities. Additionally, a significant negative correlation between cognitive decline and functional independence (r = -0.55**, p < 0.01) indicated that individuals with greater cognitive decline may experience challenges in performing daily tasks independently. These findings emphasize the need for comprehensive assessments and targeted interventions to support language functioning, cognitive health, and functional independence in elderly individuals with disabilities. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of (...) QALYs gained through particular interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (shrink)

This article presents an archaeological inquiry into the early histories of Quality of Life (QoL) measures, and takes this as an occasion to rethink the concept of the ‘medical model of disability’. Focusing on three instruments that set the ground for the emergence of QoL measures, namely, the Karnofsky Performance Scale (KPS, 1948), and the classification of functional capacity as a diagnostic criterion for heart diseases (Bainton, 1928) and as a supplementary aid to therapeutic criteria in rheumatoid arthritis ( (...) Steinbrocker, Traeger, and Batterman, 1949 ) – I discuss how medicine, throughout the emergence of QoL, began to expand its gaze beyond the confines of the body to what that body does in daily life. Building upon Armstrong et al.’s notion of ‘distal symptoms’ (2007) and Wahlberg’s idea of ‘knowledge of living’ (2018), I propose the notion of disabilitization to encapsulate this expansion of the clinical gaze, through which medicine has come to articulate diseases and their treatments in new ways, and in so doing, has inadvertently created disability as a new kind of knowledge category in itself – a category that is defined not through its reduction to mere pathology, but through its dispersal into everyday life. I present this concept not as a periodization, but as a provocative discontinuity with the totalizing history assumed within the medical model of disability, and in so doing, ask what, in fact, holds ‘the medical model’ together, and whether there might be other ways of understanding medicine’s complex relationship to disability than what the concept of the medical model allows us to envisage. (shrink)

One of the most significant economic challenges faced by people with disabilities in Turkey and globally is employment. Unfortunately, even in developed countries, the desired level of employment of the disabled individuals has not yet been measured up. The fundamental rights and freedoms of employment and labor have gained a basis of legitimacy through certain principles within the legal system throughout human history. As a matter of fact, in the main references of Islamic law, the principles of justice, rights, equality (...) of opportunity, merit, anti-discrimination, and social responsibility for all people in general and disabled people in particular have been a reference in the development of employment policies. In this regard, the main objective of Islamic economic policies has been determined as ensuring the happiness of the individual in this world and the hereafter since the early period. The study first includes active and passive employment models developed in modern legal systems. It can be stated in this framework that from the early period, both in the practices of the Prophet Muhammad and the Companions and in the later Islamic societies, institutionalization was provided according to the characteristics of the period in which disabled individuals were actively and passively employed, and it can be stated that the developments regarding the employment of disabled individuals in Islamic societies started much earlier than expected. However, we must admit that legal regulations in the modern sense were introduced later compared to the West. The study focuses on the phenomenon of disability, the problems and needs of the disabled, and the studies on employment in Islamic societies from the past to the present. It is determined that many disabled people in Islamic society are actively employed in state positions ranging from imam to judge, from commander to governor according to their abilities, and the disabled people who cannot be employed are compensated for their disadvantages through passive employment methods such as health, care, housing, salary binding, and tax reduction. Determining the principles of employment of disabled according to Islamic law is the main subject of the study, and it has been established that maslahah, custom, siyasa shar’iyya, merit, and sedd-i zerâi constitute the jurisprudential basis of the employment of the disabled in Islamic law. In this framework, it has been stated that the principle of maslahah plays a key role in the development of social responsibility policies, in resolving issues that are not included in verses and hadiths and furû fiqh acquis, in gaining the economic independence of disabled and ensuring the minimum standard of living. Maslahah is also beneficial for the individual, family, society and the state, too. It has been pointed out that the employment of disabled people has become one of the most significant matters of both national and international legal regulations today, and it has been determined that the employment of disabled people has transformed into customary practices in accordance with the criteria of being a source of Islamic law. In Islamic administrative law, active and passive employment policies, legal regulations, and institutional structures related to disabled are carried out by the authority delegated to public administrators under the siyasa shar'iyya. It has been emphasized that administrative and public service appointments in Islamic law are ordered to be made on the basis of merit, that nepotism and favoritism are prohibited, and that disability is not an obstacle to employment. In conclusion, the insufficiency of studies on employment of people with disabilities in Islamic law has been pointed out and it has been suggested that further studies should be carried out on these subjects and exploitation of disability according to Islamic law should be studied. (shrink)

BackgroundSexual boundary violations in healthcare are harmful and exploitative sexual transgressions in the professional–client relationship. Persons with mental health issues or intellectual disabilities, especially those living in residential settings, are especially vulnerable to SBV because they often receive long-term intimate care. Promoting good sexual health and preventing SBV in these care contexts is a moral and practical challenge for healthcare organizations.MethodsWe carried out a qualitative interview study with 16 Dutch policy advisors, regulators, healthcare professionals and other relevant experts (...) to explore their perspectives on preventing SBV in mental health and disability care organizations. We used inductive thematic analysis to interpret our data.ResultsWe found three main themes on how healthcare organizations can prevent SBV in mental health and disability care: setting rules and regulations, engaging in dialogue about sexuality, and addressing systemic and organizational dimensions.ConclusionOur findings suggest that preventing SBV in mental health and disability care organizations necessitates setting suitable rules and regulations and facilitating dialogue about positive aspects of sexuality and intimacy, as well as about boundaries, and inappropriate behaviors or feelings. Combining both further requires organizational policies and practices that promote transparency and reflection, and focus on creating a safe environment. Our findings will help prevent SBV and promote sexual health in mental health and disability care organizations. (shrink)

In "Frailty Triage: Is Rationing Intensive Medical Treatment on the Grounds of Frailty Ethical?," Wilkinson (2021) argues that the use of frailty scores in ICU triage does not necessarily involve discrimination on the basis of disability. In support of this argument, he claims, “it is not the disability per se that the score is measuring – rather it is the underlying physiological and physical vulnerability." While we appreciate the attention Wilkinson explicitly pays to disability in this (...) piece, we find the distinction between disability and underlying vulnerability untenable both theoretically and practically. In this peer commentary, we begin with a brief overview of research in philosophy of disability concerning the meaning of the concept itself. We argue that this research demonstrates that many forms of disability do not involve underlying vulnerabilities, and, furthermore, that Wilkinson equivocates between "disability" understood as a medical category vs. "disability" understood as a feature of lived experience. We reject Wilkinson’s distinction on these grounds and offer further considerations to avoid disability discrimination in emergency and crisis standards of care contexts. (shrink)

The dominant methodology in health policy for prioritizing and rationing health care resources is cost-effectiveness analysis, typically using quality adjusted life years (QALYs) or disability adjusted life years (DALYs) to measure health outcomes. The construction of these measures involves a number of moral or value choices, including: How should states of health and disability be evaluated, and whose preferences (e.g., the disabled or non-disabled) should be used? How should these evaluations reflect that prioritization will (...) involve tradeoffs between health benefits for different persons or groups? Do all QALYs count equally, no matter what age at which they are received? Should discount rates be applied to health benefits? I will show the nature of the moral issues at stake in answering these questions, and briefly argue how they should be answered. (shrink)

This paper examines the lack of health insurance coverage in the US as a public policy issue. It first compares the problem of health insurance coverage to the problem of unemployment to show that in terms of the numbers of individuals affected lack of health insurance is a problem comparable in importance to the problem of unemployment. Secondly, the paper discusses the methodology involved in measuring health insurance coverage, and argues that the current method of (...) estimation of the uninsured underestimates the extent that individuals go without health insurance. Third, the paper briefly introduces Amartya Sen's functionings and capabilities framework to suggest away of representing the extent to which individuals are uninsured. Fourth, the paper sketches a means of operationalizing the Sen representation of the uninsured in terms of the disability-adjusted life-year (DALY) measure. (shrink)

Despite progress, discrimination in public health remains a problem. A significant aspect of this problem relates to how medical resources are allocated. The paradigm of quality-adjusted-life-year (QALY) dictates that medical resources should be allocated on the basis of units measured as length of life and quality of life that are expected after the implementation of a treatment. In this article, I discuss some of the ethical shortcomings of QALY, by focusing on some of its flawed moral aspects, as well (...) as the way it relates to discrimination on the basis of age, race, and disability status. I argue that while this approach seeks to maximize efficiency, it does not place sufficient value on the preservation of life itself. Even more concerning is the fact that the use of QALY disproportionately harms minorities. While QALY is a well-intentioned approach to the allocation of scarce healthcare resources, new alternatives must be sought. (shrink)

India is home to 243 million adolescents. Two million of them belong to Scheduled Tribes living in underserved, rural areas. Few studies have examined the health of tribal adolescents. We conducted a cross-sectional survey to assess the health, nutrition and wellbeing of adolescent girls in rural Jharkhand, eastern India, a state where 26% of the population is from Scheduled Tribes. We aimed to identify priorities for community interventions to serve adolescents and their families. Between June 2016 and January (...) 2017, interviewers visited all households in 50 purposively sampled villages of West Singhbhum district, Jharkhand. They aimed to interview all girls aged 10–19. Interviewers conducted face-to-face interviews with girls to administer a survey about physical and mental health, disability, nutrition, sexual and reproductive health, gender norms, decision-making, education and violence. Interviewers also measured girls’ height, weight, and Mid-Upper Arm Circumference. Interviewers collected data from 3324 of an estimated 4068 girls residing in the study area. Their mean age was 14.3. 82% were from Scheduled Tribes. 89% of younger girls aged 10–14 and 46% of older girls aged 15–19 were in school or college. Girls dropped out of school because they were required for household work or work on the family farm or business. Over a third reported symptoms of anaemia in the past month, but less than a fifth had a blood test. The prevalence of thinness was 14% for younger girls and 6% for older girls. 45% of girls were stunted. 40% reported emotional violence in the past year, 14% physical violence, and 0.7% sexual violence. 12% had problems associated with depression or anxiety. 30% aged 15–19 had heard of contraception. Among married girls and their husbands, only 10% had ever used methods to prevent or delay pregnancy. Our study identified several priorities to improve adolescent girls’ health, nutrition and wellbeing in largely tribal areas of Jharkhand: reducing violence, early marriage and undernutrition, as well as improving mental health, knowledge about contraception and school retention. (shrink)

Intellectual disability leads to a loss of autonomy and a high level of dependence, requiring support from another person permanently. Therefore, it is necessary to incorporate the assessment of caregiver burden in healthcare actions, to avoid putting the health of caregivers and patients at risk. In this sense, the study aimed to analyze the internal structure of the Zarit Burden Interview (ZBI) in a sample of caregivers of people with intellectual disabilities, to provide convergent and discriminant evidence with (...) a measure of the risk of maltreatment, and to estimate the reliability of the scores from the Classical Test Theory and the Rasch Measurement Theory. The study was instrumental. The sample consisted of 287 Peruvian informal primary caregivers of persons diagnosed with intellectual disabilities. To collect validity evidence, the internal structure (confirmatory factor analysis, CFA) and the relationship with other variables (convergent and discriminant evidence) were used, while reliability was estimated through the omega coefficient and Rasch analysis. The internal structure of the ZBI corroborated a unidimensional structure. In terms of convergent and discriminant evidence, the scale presents adequate evidence. Reliability levels were also good. Previously, the psychometric properties of the ZBI have not been studied in caregivers of people with intellectual disabilities, and it represents the first study of the scale in Peru. The results obtained will allow the use of this scale to design actions in the work with caregivers and studies to understand the psychology of the caregiver. (shrink)

Disabled people frequently find themselves in situations where their quality of life and wellbeing is being measured or judged by others, whether in decisions about health care provision or assessments for social supports. Recent debates about wellbeing and how it might be assessed (through subjective and/or objective measures) have prompted a renewed focus on disabled people’s wellbeing because of its seemingly ‘anomalous’ nature; that is, whilst to external (objective) observers the wellbeing of disabled people appears poor, based on subjective (...) assessments, people with disabilities report a good quality of life. In this paper, I examine an article by the philosopher Dan Moller in which he seeks to explain this ‘disability paradox’. Despite agreeing with his analysis that there is more to what people value than happiness, his explanation reflects some of the difficulties presented in philosophical accounts which seek to understand the lives of disabled people: this includes an analysis which fails to problematise definitions of wellbeing and who has the ‘voice’ to do the defining; which negates the multiple identities and subject positions that disabled people occupy; and which lacks recognition of the social contexts which mediate disabled people’s lives. I suggest that there is a need to incorporate disabled people’s voices into research which deepens our empirical knowledge about the relationship between impairment and wellbeing, including the social circumstances that shape disabled people’s agency. (shrink)

ContextPeople with mental disorders can acquire long-term disabilities, which could impair their functioning and quality of life (QoL), requiring permanent care and social support. Systematic data on QoL and functioning, which could support a better management of these people, were not available.ObjectiveTo analyze the QoL, level of functioning and their association with sociodemographic and clinical factors of people with mental disorders who underwent deinstitutionalization using assisted living facilities.MethodsA Cross-sectional study was conducted between July 2018 and July 2019, through interviews using (...) the World Health Organization Quality of Life (WHOQOL-BREF) to determine the QoL scores, and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) to determine the level of functioning. All adults (≥18 years old) with mental disorders, who underwent deinstitutionalization, users of assisted living facilities and assisted by the Psychosocial Assistance Centers III, in a city in the state of São Paulo, Brazil, were selected. For statistical analysis of the associated factors, Student’st-test was used for dichotomous variables and ANOVA for polynomial variables. Pearson correlation coefficient was used to measure the association between QoL and functioning scores.ResultsOut of 359 people who underwent deinstitutionalization with mental disorders, 147 met the eligibility criteria. The mean total score for the WHOQOL-BREF was 66.5 ± 13.4 and the mean score for WHODAS 2.0 was 10.4 ± 7.6. An association was found between people who were studying (n= 65.8; 95%CI, 63.5–68.1vs. n= 73.9; 95%CI, 67.5–80.3;p= 0.04) and better WHOQOL-BREF QoL scores or WHODAS 2.0 levels of functioning (n= 10.9; 95%CI, 9.6–12.2vs. n= 5.1; 95%CI, 2.5–7.7;p= 0.01). A weak negative correlation (r= 0.41) emerged between higher QoL scores and functioning improvement.ConclusionThis study indicates that the QoL of the sample is associated by their functioning levels, which, in turn, may reflect on their social interactions. Public policies that favor interventions increasing socialization of this population can result in better health outcomes. The QoL and functioning scores provide valuable insights to develop public policies more suited to this population profile. (shrink)

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on the QALY scale, (...) below that of someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it. (shrink)

Each of us has written about the importance of reframing the debate over public health paternalism. Our individual explorations of the many and varied paths forward from libertarian “nanny state” objections to the “new public health” have been intimately informed by collaboration. This article represents a summary of our current thinking — reflecting the ground gained through many fruitful exchanges and charting future collaborative efforts.Our starting point is that law is a vitally important determinant of population health, (...) and the interplay among law, social norms, cultural beliefs, health behaviors, and healthy living conditions is complex. Anti-paternalists’ efforts to limit the scope of public health law to controlling only the proximal determinants of infectious diseases are utterly unjustifiable in the face of so much preventable death, disability, and disparity. Equally important, the anti-paternalism push is deeply counter-majoritarian and undemocratic, threatening to disable communities from undertaking measures to improve their own well-being. (shrink)

Australia, Canada, and New Zealand currently apply health requirements to prospective immigrants, denying residency to those with health conditions that are likely to impose an “excessive demand” on their publicly funded health and social service programs. In this paper, I investigate the charge that such policies are wrongfully discriminatory against persons with disabilities. I first provide a freedom-based account of the wrongness of discrimination according to which discrimination is wrong when and because it involves disadvantaging people in (...) the exercise of their freedom on the basis of morally arbitrary features of their identity. Discrimination is permissible, I suggest, when it is necessary to advance a valuable exercise of the discriminating agent’s freedom. I then apply this account to the case of social cost health requirements. Against critics of these requirements, I argue that it is sometimes permissible for states to discriminate against prospective immigrants with disabilities. States may do so, I suggest, when such discriminatory treatment is necessary to prevent an increase in rates of mortality and/or morbidity amongst citizens. Alongside critics of social cost health requirements however, I argue that existing policies are likely a form of wrongful discrimination insofar as they are too broad to satisfy this standard. (shrink)

One of most pertinent and acute risks that the world is now facing is emerging or re-emerging zoonotic diseases. This article focuses on culling as a measure for zoonotic disease control, specifically the culling of 11,000 badgers as part of the Randomized Badger Culling Trial in the UK and the culling exercises in Singapore. The independent expert panel that devised the UK study concluded that reactive culling was ineffective in reducing the cases of bovine tuberculosis in cattle. The panel also (...) concluded that proactive culling was not cost-effective. Behind the scarcity of empirical evidence to support culling, the resultant reduction in biodiversity can actually harm both animals and humans. Public health policies should be evidence-based, culturally adaptable and ethically justified; a novel biomedical and public health approach, named One Health, plausibly provides a reasonable ethical framework as well as research and interventional methods that square with that framework. OH recognizes that nonhuman animals and humans are interlinked in both sickness and health, since we all share the same ecosystem. OH could potentially replace standard public health strategies, as it provides alternative evidence-based methods for biomedical research and adds a non-anthropocentric component to an ethical decision-making process. (shrink)

This paper argues that epistemic errors rooted in group- or identity- based biases, especially those pertaining to disability, are undertheorized in the literature on medical error. After sketching dominant taxonomies of medical error, we turn to the field of social epistemology to understand the role that epistemic schemas play in contributing to medical errors that disproportionately affect patients from marginalized social groups. We examine the effects of this unequal distribution through a detailed case study of ableism. There are four (...) primary mechanisms through which the epistemic schema of ableism distorts communication between nondisabled physicians and disabled patients: testimonial injustice, epistemic overconfidence, epistemic erasure, and epistemic derailing. Measures against epistemic injustices in general and against schema-based medical errors in particular are ultimately issues of justice that must be better addressed at all levels of health care practice. (shrink)

Worldwide, obesity has become a major cause of preventable death, disease, and disability. While the epidemic of obesity is a significant public health issue in many developed nations, the United States has the highest prevalence of obesity among adults and children internationally. The National Health and Nutrition Examination Survey estimates that over 60 percent of U.S. adults are overweight or obese. According to the Centers for Disease Control and Prevention, “overweight” refers to adults whose body mass index, (...) a number calculated using weight and height measurements, is between 25 and 29.9. “Obese” refers to adults whose BMI is 30 or higher. Among American children and adolescents, approximately 17 percent are overweight. (shrink)

Prenatal Diagnosis (PD) includes diagnostic procedures carried out during the antenatal period, together with Preconception Screening (PS) of prospective parents, and prenatal genetic diagnosis (PGD). The purpose of all these procedures is to provide prospective parents with opportunities to decide whether or not to have a child who will be diseased or disabled. Selection decisions determine what kinds of children are brought into existence; the ability to make these decisions is of huge ethical significance. It raises connected questions about discrimination, (...) the social status of disabled people and the medicalisation of disability; patient vulnerability and the power of the medical and counselling professions to influence decision-making; and the conceptualisation of selection as a public health measure and even as eugenic. In this paper, I outline the ethical issues raised by prenatal diagnosis and describe some of the arguments which have been elaborated in relation to the permissibility of selecting against (and occasionally for) diseases and disabilities. I conclude that there are no good arguments against the prevention of disability through PD but that providing adequate information for decision-making and facilitating uncoerced individual decisions requires further attention. (shrink)

Recent years have witnessed a growing interest in the measurement of health status. One of the most well-known health status instruments is the Sickness Impact Profile (SIP). This paper examines the nature, development and testing of the SIP (and its UK equivalent the FLP). The practical merits of these instruments are explained, and some cautionary remarks are offered about their limitations.

Should organ transplants be given to patients who have waited the longest, or need it most urgently, or those whose survival prospects are the best? The rationing of health care is universal and inevitable, taking place in poor and affluent countries, in publicly funded and private health care systems. Someone must budget for as well as dispense health care whilst aging populations severely stretch the availability of resources. The Ethics of Health Care Rationing is a clear (...) and much-needed introduction to this increasingly important topic, considering and assessing the major ethical problems and dilemmas about the allocation, scarcity and rationing of health care. Beginning with a helpful overview of why rationing is an ethical problem, the authors examine the following key topics: What is the value of health? How can it be measured? What does it mean that a treatment is "good value for money"? What sort of distributive principles - utilitarian, egalitarian or prioritarian - should we rely on when thinking about health care rationing? Does rationing health care unfairly discriminate against the elderly and people with disabilities? Should patients be held responsible for their health? Why does the debate on responsibility for health lead to issues about socioeconomic status and social inequality? Throughout the book, examples from the US, UK and other countries are used to illustrate the ethical issues at stake. Additional features such as chapter summaries, annotated further reading and discussion questions make this an ideal starting point for students new to the subject, not only in philosophy but also in closely related fields such as politics, health economics, public health, medicine, nursing and social work. (shrink)

In Western industrialized countries, women report using health services, and certain medications, more often than do men. Often, analyses are based on data that exclude objective measures of morbidity and that come from cross-sectional surveys, which precludes the use of socioeconomic covariates that are endogenous to seeking care. Here, differences in objective cognitive and physical function, as well as differences in reporting on illness, propensity to seek care, and socioeconomic resources are expected to account for differences in care-seeking behaviour (...) among women and men. This model is applied to the question of medication use in Ismailia, Egypt, using two waves of survey data and in-home tests of physical function from 896 adults aged 50 years and older. The results show that women use medications more often than do men, and that differences between women and men in reported morbidity and disability, observed cognitive and physical function, and economic resources account for womens and men’s care-seeking behaviour in later life. (shrink)

The International Covenant on Economic, Social and Cultural Rights was signed by Turkey in 2000 and has been in force since September 23rd, 2003. For this reason, the Covenant is considered as act of parliament in our domestic law, and unlike the general procedure of application of the law, it can not be alleged to contradict the Constitution (According to Article 90 of the Turkish Constitution). The article 12 of the Covenant defines the right to health and its content. (...) In the article 12 of the Covenant, in its General Comment No. 14 published in 2000, the right to the highest attainable standard of health was interpreted and commented upon. This document contains a detailed description of the right to health, its content, and its obligations to State parties. Although this Comment of the Covenant is not binding, it is a document to which the State parties refer when taking measures related to health services. Every publication and comment on the right to health was based on the General Comment 14 of the Covenant. The Article 12 was reinterpreted by the Covenant on May 2nd, 2016 in the context of rights to sexual and reproductive health. İit has been emphasized that legal, procedural, practical and social barriers limit the access of individuals to full range sexual and reproductive health services. It has also been pointed out that accessibility of sexual and reproductive health services is a distant target for women and girls. Moreover, it has been stated that discrimination that increases exclusion in legislation and practice limits lesbian, gay, bisexual, transgender and intersex (LGBTI) individuals and disabled people'senjoyment of sexual and reproductive health rights. For this reason, it is stated that although commenting on the rights of sexual health and reproductive health is included in 14 comments, it is important to make an interpretation about them. This comment is an interpretation of a binding Convention. Therefore; It is a document that will provide guidance on measures to be taken by States Parties in respect of their rights to sexual health and reproductive health. At the same time, obstacles to discrimination in medical practice bring important approaches in terms of respect for autonomy and respect for private life. In our article, information about the content of the ESKHK's interpretation and possible reflections of this content in the field of medical law and ethics will be given. (shrink)

BackgroundMultiple sclerosis, the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life. Since MS is generally diagnosed at a young age—a period of great significance for personal, relational, and professional development—adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in (...) order to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS and to the involvement of patients in the development of such programs.AimsIn collaboration with MS patients, this study aims to develop a bio-psycho-social intervention for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects.MethodsTo tailor the intervention to the specific needs of YawMS, “patient engagement principles” will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre–post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention. (shrink)

When disability-adjusted life years are used to measure the burden of disease on a population in a time interval, they can be calculated in several different ways: from an incidence, pure prevalence, or hybrid perspective. I show that these calculation methods are not equivalent and discuss some of the formal difficulties each method faces. I show that if we don’t discount the value of future health, there is a sense in which the choice of calculation method is a (...) mere question of accounting. Such questions can be important, but they don’t raise deep theoretical concerns. If we do discount, however, choice of calculation method can change the relative burden attributed to different conditions over time. I conclude by recommending that studies involving disability-adjusted life years be explicit in noting what calculation method is being employed and in explaining why that calculation method has been chosen. (shrink)

Ancient medical and healing systems are currently attracting considerable interest. This issue includes interdisciplinary studies which focus on new perceptions of some ancient and medieval medical systems, exploring how they related to each other, and assessing their contribution to modern society. It is shown that pre-Greek medicine included some rational elements, and that Egyptian and Babylonian medical systems contributed to a tradition which led from classical antiquity through the Middle Ages and beyond. The reliability of sources of evidence is considered, (...) as well as the legacy of the ancient healing environments and disease treatments. Finally, where documentation survives, the legacy of social attitudes to health and disease is considered. Overarching principles directed policies of social medicine and healthcare in antiquity and the Middle Ages: for example, the causes and transmission routes of infectious diseases, as well as the basic principles of sterilization, were unknown, but nevertheless attempts were made to improve sanitation, provide clean water, and ensure access to trained physicians. In some cases, the need to limit the size of the population prompted the use of contraceptive measures, and surviving information also illuminates attitudes to deformity, disability and the treatment of the terminally ill. (shrink)

The Human Genome Project has allowed researchers to gain new insights into the genetic causes of health and disease. With this knowledge comes the potential to develop new genetic tests that are capable of predicting the risk of disease or disability among presently healthy individuals. This information is potentially beneficial in that it may allow individuals to develop strategies to reduce their risk of illness and may allow health providers to recognize and treat the early stages of (...) disease more effectively. As knowledge about genetic contributions to disease continues to grow and genetic testing technology becomes more widespread, there is a risk that personal genetic information could be used in ways potentially concerning to consumers. Genetic testing technology could potentially be used to discriminate against individuals in terms of their ability to obtain health, life, and disability insurance. Decreased access to insurance, in turn, significantly hinders access to health care and income for oneself and/or for one's dependent. (shrink)

People with disabilities (PWD) comprise a significant part of the population yet experience some of the most profound health disparities. Among the greatest barriers to quality care are inadequate health professions education related to caring for PWD. Drawing upon the expertise of health professions educators in medicine, public health, nursing, social work, and physician assistant programs, this forum showcases innovative methods for teaching core disability skills and concepts grounded in disability studies and the (...) class='Hi'>health humanities. Each of the essays offers practical guidance for developing curricular interventions appropriate for students at various levels of training and familiarity with disability to be implemented in classroom discussions, case-based learning, lectures, panels, and clinical simulations across the full spectrum of pre-health and health professions education. (shrink)

The aim of this study is to develop a valid and reliable measurement tool for determining students' spiritual health and life orientation. For this purpose, the Spiritual Health and Life-Orientation Measure (SHALOM) inventory developed by Fisher (2010) is adapted to Turkish. The adaptation study was carried out on 1591 high school students in three study groups studying in Ankara and Muş. The original English measure consisting of four dimensions and twenty items was translated into Turkish, factor analysis, validity (...) and reliability tests were conducted on the sampling data. As a result of the study, the Turkish-adapted inventory consists of four dimensions (personal, social, environmental and transcendental) which resemble the original inventory. In addition, internal consistency coefficients of the inventory dimensions were in perfect harmony with the original inventory and served the purpose of the scale. In Conclusion The Turkish adaptation of the SHALOM Inventory can be used in different disciplines of psychology, educational sciences, and social sciences. Summary: The concept of religion, which is an important dynamic and carrier of the social field, has gone into a double distinction since the second half of the 18th century; the concept of spirituality has begun to be refined from the concept of religion. The concepts of religion and spirituality are very difficult to define; While the concept of religion focuses ideology and rules of belief, spirituality centers on individual experiences and interrelationships that extend religion. For this reason, different spirituality and religion definitions are made from different perspectives and different spirituality scales were developed within this framework. However, the results of these studies differ significantly from each other; this means that spirituality was defined and conceptualized based on the scale that was used. Early period studies on spirituality mostly focus on religion, health, psychology and work life. In these studies, after defining the concept of spirituality; the relationship between the concept and health, religion, psychology and business life or necessity for human life is discussed. In the West, until the 1950s, the concepts of religion and spirituality were used interrelated. However, today these two concepts are almost completely separated from each other.Literature consists of numerous inventory development studies to measure spirituality. The fact that the inventory works based on different conceptual foundations makes it difficult to draw a general, meaningful and consistent conclusion about spiritual health and life orientation. Furthermore, spirituality measurements reflecting the religion and values ​​of a particular culture cannot be comprehensive or universal. At this point, Fisher criticizes the measurement tools developed for the purpose of measuring spirituality: in terms of "mixing religion and spirituality", "relying on the world of values", "not taking into account cultural differences", "and questioning only the mystical/spiritual experience". As a result, it can be said that no measurement developed in the conceptual structure of the West does not take into account the cultural flexibility and accept its spiritual values as universal or prevalent.The SHALOM inventory developed by Fisher, which adapted to the Turkish culture in present study, is based on four basic (individual, social, environmental and transcendent) areas that constitute the world of interpersonal relationship. In this study, spirituality, as in Fisher's work, emphasizes the interaction with certain concepts of different intensities that are considered as independent from religion and above religions. In this context, the concept of spirituality communicates with one's personal space, social position, nature, and transcendental power. This adaptation study will provide useful information and comments on the students' spiritual health levels. This is the most important motive behind the idea of adapting the SHALOM inventory developed by Fisher to the Turkish culture. In addition, by adapting the SHALOM inventory, which is emphasized to have cultural flexibility and adapted to different languages, a new and different measurement tool will be available to understand the nature of the concept of spirituality.This research was carried out to adapt the inventory of Spiritual Health and Life Orientation scale developed for students to Turkish culture. This inventory adaptation study was performed with the data collected from three working groups in Ankara and Muş provinces and 1591 high school students. The first study group was carried out with 414, the second study group with 788, and the third group with 389 high school students. While the data collected from 414 students were used for Exploratory Factor Analysis (AFA) analysis, data collected from 788 students were used for Confirmatory Factor Analysis (CFA). In addition, 389 students were used to determine the criterion validity of the inventory. The original language of the SHALOM inventory, which is intended to be adapted into Turkish, is English, and translation studies are conducted separately by three linguistic experts who know the grammar and semantic characteristics of both languages. After the translation studies, the scale was applied to the sampling group and AFA was performed on the sample data. The AFA results showed that a factor roof resembling the original inventory was formed. Determining factors are given appropriate names (personal, enviromental, social and transcendental) by taking into consideration the theoretical names and the dimension names in the original form of the SHALOM. The structure was confirmed by DFA, and as a result of the DFA, X2/sd (1.72) ratio and IFI (0.96) fit indicator was found to be the appropiate fit for the model tested. As a result, it is understood that the Spiritual Health and Life Orientation Inventory consists of four dimensions as in the original inventory, the internal consistency coefficients of the inventory dimensions are in harmony with the original inventory and serve the purpose of the scale. In conclusion the Turkish adaptation of the SHALOM Inventory can be used in different disciplines of psychology, educational sciences, and social sciences. Spirituality should not only be defined within the framework of Western theories, but the nature and likelihood of the spirituality predicted by Islam should be discussed. Moreover, the types and dimensions of Islamic spirituality should be determined by taking into account the cultural subjectivity of an Islamic character. In the study of spirituality, the human model which modernity presents universally should not be accepted as the only truth. It should be tried to develop human models that come from Islamic culture and history and which are specific to us and define us. This should be taken into account not only in mental health / religious studies, but also in psychology of religion in general. In addition, culture-specificity should be given importance, and the experience gained from the cultural accumulation developed by the Turkish civilization with the Islamic doctrine should lead to the studies of spirituality. In this respect, this study aims to adapt the value and spiritual orientation of a different culture to Turkish culture, but it is problematic to construct the concept with Western values. Although Western values are similar to Islamic values and principles, it is envisaged that it may be difficult to measure the concept of spirituality in practice. (shrink)

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on (...) health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (shrink)