In spite of the French public policies implemented to meet the needs of students with disability and the promulgation of laws promoting inclusion in higher education, many barriers leading to social exclusion remain. The present paper analyzes the impact of health issues on young people educational path using com semi-structured interviews with high school and university students affected by serious and chronic diseases (n = 19) from a sociological survey. The objective was to identify the needs and aspirations (...) of these young people with disability to propose a suitable response to those needs, while also taking into account existing resources using a co-constructive approach. The analysis highlights the disconnect between the different domains of social interaction in which disabled students are included. Parental support and the transition between upper secondary and higher education are hindered by a lack of institutional cohesion. We investigate how stakeholders in the three institutional domains concerned with the disabled students (educational, medical and family) interact with each other using a systemic and polycentric approach. Our study shows that that a mediator is required to help solve the problems encountered by students with serious and chronic diseases as one possible approach to address their needs. (shrink)

In our country, mildly mentally disabled students are being educated in general education classes by means of integration. An individualized education program (IEP) is being prepared for these students when needed. However, the impact of BEP on students with intellectual disabilities in religious education has not yet been sufficiently discussed. The purpose of this research is to examine the impact of the IEP on the achievement of religious education of mentally disabled students and the level of religious learning of these (...) students. For this purpose, in addition to the education given in the general education class for the 6 mildly mentally disabled integration students studying in the 4th grade of primary school, 2 hours of education were carried out in the support education room per week during the education and training year. Semi-experimental study was designed according to the single-tasked multiple-start model. Education process was evaluated by Achievement Test, the Teacher Observation Form, the pre-test based on the Self-Assessment Form, post-test and retention tests. As a result, it has been seen that BEP has a positive effect on the achievement of religious education of mentally disabled students (ZEKÖ). In this framework, it has been found that students are influenced by the society, especially by their peers, when they are given time they constitute religious knowledge, they understand normal individuals religious behaviours, they are more emotional, they forget religious information that is not used in everyday life and when they accomplish they increase self-confidence and self-esteem and internalize values.SummaryPeople differ in their creation. This difference is greater in people disabled. In terms of individual traits and educational qualifications, individuals with disabilities who are severely different from their peers and who have difficulty in playing the roles they should play are evaluated in several groups. One of these groups is mentally disabled. Mentally handicapped people have various rights as normal individuals. One of these rights is the right to education. National and international laws guarantee the educational rights of individuals with intellectual disabilities. Similarly, Islam and his best practitioner, the prophet Muhammad, did not consent to the transformation of the mentally disabled into begging masses or to their isolation, but rather to integrate them into society. According to Islam, individuals with intellectual disabilities have the “capacity to acquire rights“, even if they do not have "capacity to act". This right requires them to receive an education that takes into account their differences, just like normal individuals. Because of their learning characteristics, mentally retarded students differ from their peers, therefore they cannot benefit from the educational activities organized for normal students. So, these students need a special education to ensure that the mentally disabled are successful and live in society without being dependent.Inrecent years, in our country as well as in the world, the principle of "least restricted education environment" is taken into consideration for mentally handicapped people who need special education, which approaches to co-education with their peers. This approach is tried to-be applied at all educational levels. Due to the diagnosis and evaluation in the Guidance and Research Center, a large number of mentally retarded students are placed in normal schools. These students, like other courses, take the Religious Culture and Moral Knowledge Course together with the normal students. However, depending on their learning, they have the right to receive separate training as 1-3 people at-the support training room. The instructional adaptations necessary for the education of these students made by the Guidance and Research Centers are carried out by the teacher who plays the basic role in the education of the students. One of the important elements in the education of these mentally retarded students who need special education is the individualized education program. This program is prepared by the cooperation and joint decision of all stakeholders who may contribute to student’s education. The status of the student to participate in the learning and teaching activities, the amount and the quality of the education to be received in the support education room are made within the framework of this program.One of the most important courses in the education of mentally retarded students who are educated by inclusion is the Religion Culture and Moral Knowledge course. Because this course has the potential to make serious contributions to the socialization of students and to maintain their lives independently. However, there are a limited number of studies investigating the quality of religious education at-the scientific level. Furthermore, it has not been observed that these studies have been quasi-experimental. This study aims to reveal the quality of education for the mentally handicapped students. For this purpose, it aims to determine the contribution of religious education in the support education room to the success of the student depending on the individualized education program. It also makes it possible to make conclusions about how mentally handicapped people use their mental skills to learn religion. Depending on the aim of the study, during the 2015-2016 academic year, primary school 4th grade students and 6 mentally disabled inclusion students were educated. The quasi-experimental study was designed according to the single-subject multiple-start model. The process of the education, in other words, the development of mentally retarded students towards religious learning; were evaluated by Success Test, Teacher Observation Form and Self-Assessment Form based on pre-test, post-test and retention tests.Findings of the study; Faith, worship, the prophet Muhammad, Qur’an and its commentary, are classified according to the fields of morality, religion, and culture. The post-test achievement scores of the students in all learning areas were higher than the pre-test achievement scores. This shows that religious education in the support training room based on individualized education plan contributes positively to the success of the student. The results of the retention test are close to the results of the final test. In addition, it was determined that the students were affected by the society, especially by their peers, structured the religious knowledge when given time, they understood the religious behaviors of the normal individuals, became more emotional, forgot the religious information that is not used in daily life, increased their self-confidence and self-esteem as they succeeded and internalized the values. Based on these results, the following recommendations have been developed.Support Education Rooms should be functionalized and special attention should be given to individual or group-based religious education based on the nature and objectives of the subject in these rooms.In religious education, by taking into account the performances of mentally retarded inclusion students (MHIS), the relevant dimension of religion should be given importance according to their contribution to their normal lives and they should be consistent and patient in this process.Since MHIS has different levels of learning and perception and different developmental characteristics at every stage of life, it should prioritize their proper use of their existing capacities based on their religious education, interests and curiosities.Since MHIS is influenced by the emotion dimension rather than the information dimension of religion, religious education for them should be oriented towards life, which is not academic, literal or doctrinal, but rather their life and feelings.Similar studies with different study group students must be done and the results of the study should be interpreted comparatively. 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Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability over the last (...) fifty years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, (...) despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

Disability studies have been successfully focusing on individuals' lived experiences, the personalization of goals, and the constitution of the individual in defining disease and restructuring public understandings of disability. Although they had a strong influence in the policy making and medical modeling of disease, their framework has not been translated to traditional naturalistic accounts of disease. I will argue that, using new developments in evolutionary biology (Extended Evolutionary Synthesis [EES] about questions of proper function) and behavioral ecology (...) (Niche conformance and construction about the questions of reference classes in biostatistics accounts), the main elements of the framework of disability studies can be used to represent life histories at the conceptual level of the two main “non-normative” accounts of disease. I chose these accounts since they are related to medicine in a more descriptive way. The success of the practical aspects of disability studies this way will be communicated without causing injustice to the individual since they will represent the individuality of the patient in two main naturalistic accounts of disease: the biostatistical account and the evolutionary functional account. Although most accounts criticizing the concept of disease as value-laden do not supply a positive element, disability studies can supply a good point for descriptive extension of the concept through inclusion of epistemic agency. (shrink)

Ten years ago, I was diagnosed with a rare illness called Myasthenia Gravis. Myasthenia Gravis is a long-term neuromuscular autoimmune disease where antibodies block or destroy specific receptors at the junction between nerve and muscle; hence, nerve impulses fail to trigger muscle contractions. The disease leads to varying degrees of muscle weakness. Currently, I have only minor symptoms, I am not seriously impaired, and I do not suffer from any social disadvantage because of my illness. Yet, my life (...) and my body since my diagnosis feel different than before. In this paper I aim to make this feeling intelligible and propose that it is a state of what I call ‘latent impairment’. Latent impairment is a state of being ‘in between’, different from being actually impaired and also different from being abled-bodied. The theory takes its cues both from social constructionist theories of disability as well as theories of (chronic) illness and their focus on the importance of subjectivity. Furthermore, I suggest that a phenomenological understanding of latent impairment can show possible ways of becoming an ally to the DRM. (shrink)

This paper examines the support for diversity from a moral perspective. Combining business ethics theory with a lens of critical discourse analysis, it reconstructs the debates on the ethicality of three disability inclusion practices—positive discrimination, job adaptations, and voluntary disclosure—drawn from multi-stakeholder interviews in disability-friendly organizations. Discursive resistance to disability inclusion practices, otherwise known to work, arises out of moral beliefs characteristic of an ethic of justice, whereas support is more often informed by an ethic of care. This study contributes (...) to the literature by laying bare how ethics fuel ‘resistance to’ rather than ‘support for’ diversity and inclusion. Like prior studies, it links such resistance to the myth of individual merit, noting that some re-appropriation of an ethic of justice becomes possible when legal awareness around issues of disability is raised in the context of work. In addition, it identifies an ethic of care as holding the greatest potential for fostering workplace inclusion yet cautions for two adverse side effects that may arise when promoting corporate care: the potential of paternalism and the inclination to individualise inherent to wellbeing initiatives. (shrink)

Disease prioritarianism is a principle that is often implicitly or explicitly employed in the realm of healthcare prioritization. This principle states that the healthcare system ought to prioritize the treatment of disease before any other problem. This article argues that disease prioritarianism ought to be rejected. Instead, we should adopt ‘the problem-oriented heuristic’ when making prioritizations in the healthcare system. According to this idea, we ought to focus on specific problems and whether or not it is possible (...) and efficient to address them with medical means. This has radical implications for the extension of the healthcare system. First, getting rid of the binary disease/no-disease dichotomy implicit in disease prioritarianism would improve the ability of the healthcare system to address chronic conditions and disabilities that often defy easy classification. Second, the problem-oriented heuristic could empower medical practitioners to address social problems without the need to pathologize these conditions. Third, the problem-oriented heuristic clearly states that what we choose to treat is a normative consideration. Under this assumption, we can engage in a discussion on de-medicalization without distorting preconceptions. Fourth, this pragmatic and de-compartmentalizing approach should allow us to reconsider the term ‘efficiency’. (shrink)

Globally, chronic disease and conditions such as diabetes, cardiovascular disease, depression and cancer are the leading causes of morbidity and mortality. Why, then, are public health efforts and programs aimed at preventing chronic disease so difficult to implement and maintain? Also, why is primary care—the key medical specialty for helping persons with chronic disease manage their illnesses—in decline? Public health suffers from its often being socially controversial, personally intrusive, irritating to many powerful corporate (...) interests, and structurally designed to be largely invisible and, as a result, taken for granted. Primary care struggles from low reimbursements, relative to specialists, excessive paperwork and time demands that are unattractive to medical students. Our paper concludes with a discussion of why the need for more aggressive public health and redesigned primary care is great, will grow substantially in the near future, and yet will continue to struggle with funding and public popularity. (shrink)

This study addresses inclusive strategies and the impact of public policies on the integration of university students with disabilities, with special emphasis on their mental well-being in academic settings. Through a quantitative approach, data from a sample of students with disabilities in public and private universities were analyzed. The results reveal that the proper implementation of inclusive policies significantly improves both academic integration and the emotional well-being of students. Key areas were identified for improving psychological care and academic accommodations, highlighting (...) the importance of a holistic approach to addressing diversity in higher education. (shrink)

Chronic diseases are recognized as a leadingcause of mortality, morbidity, health careutilization and cost. A constant tailoring ofcare to the actual needs of individualpatients, complexity and long duration are thedistinguishing features of chronic diseasemanagement.

Ageing populations and rising rates of chronic disease globally have shifted key elements of disease management to ideas of integrated care and self‐management. The associated policies and programmes often focus on intervention and support beyond the sites of the hospital and clinic. These shifts have significantly impacted the delivery and practice of nursing for both nurses and the clients with whom they work. This article argues that Foucault's comments on space, place and heterotopia (1986) are useful in (...) exploring these changes from a philosophical perspective, to draw out the complexity of these programmes and add texture to discussions on the ways these shifts to localisation and the dominant discourses of self‐management and responsibility have reconfigured nursing practices. The theoretical discussion is augmented with illustrations from an Australian integrated health care programme. (shrink)

While nearly all patients with a chronic disease must self-manage their condition to some extent, preparation for these responsibilities is infrequently assured in the USA. The result can be significant harm and the undermining of a patient’s ability to take advantage of life opportunities and be productive. Agreeing to care for a patient involves a moral responsibility to see that she or he receives the essential elements of care, including the ability to manage the disease on a (...) daily basis. The research base for the efficacy of self-management and for how patients can be prepared to assume it is sufficiently strong that health care professionals must advocate for its inclusion in the routine evidence-based care of individuals with chronic disease. Because patient education is central to nursing’s philosophy and practice, the profession should play a major role in removing structural barriers to self-management preparation and assuring its provision to a high standard of quality. (shrink)

Suicide is amongst the top ten causes of death for all age groups in most countries of the world. It is the second most important cause of death in the younger age group (15-19 yrs.) , second only to vehicular accidents. Attempted suicides are ten times the successful suicide figures, and 1-2% attempted suicides become successful suicides every year. Male sex, widowhood, single or divorced marital status, addiction to alcohol ordrugs, concomitant chronic physical or mental illness, past suicidal attempt, (...) adverse life events, staying in lodging homes or staying alone, or in areas with a changing population, all these conditions predispose people to suicides. The key factor probably is social isolation. An important WHO Study established that out of a total of 6003 suicides, 98% had a psychiatric disorder. Hence mental health professionals have an important role to play in the prevention and management of suicide. Moreover, social disintegration also increases suicides, as was witnessed in the Baltic States following collapse of the Soviet Union. Hence, reducing social isolation, preventing social disintegration and treating mental disorders is the three pronged attack that must be the crux of any public health programme to reduce/prevent suicide. This requires an integrated effort on the part of mental health professionals (including crisis intervention and medication/psychotherapy), governmental measures to tackle poverty and unemployment, and social attempts to reorient value systems and prevent sudden disintegration of norms and mores. Suicide prevention and control is thus a movement which involves the state, professionals, NGOs, volunteers and an enlightened public. Further, the Global Burden of Diseases Study has projected a rise of more than 50% in mental disorders by the year 2020 (from 9.7% in 1990to 15% in 2020). And one third of this rise will be due to Major Depression. One of the prominent causes of preventable mortality is suicidal attempts made by patients of Major Depression. Therefore facilities to tackle this condition need to be set up globally on a warfooting by governments, NGOs and health care delivery systems, if morbidity and mortality of the world population has to be seriously controlled . The need, first of all, is to identify suicide prevention as public health policy, just as we think in terms of Malaria or Polio eradication, or have achieved smallpox eradication. (shrink)

Chronically ill conditions are particularly difficult to manage because of their impact both on the social and on the corporal sphere to such an extent as to involve a series of problems that negatively alter the quality of life of affected patients. Chronicity has also a considerable ef-fect on social capital. In the current literature, it is known that social capital may contribute to a range of advantages to people health. Chronic Venous Disease (CVD) includes several pathologi-cal alterations (...) of the venous system of the lower limbs that cause a wide range of symptoms and signs. The aim of this study is to explore, with a qualitative approach, the dynamics of social cap-ital within people's experience of CVD and describe the roles of family and friends and the health care system. The method used is based on face-to-face semistructured interviews was performed, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Six-teen patients were included: 11 women and 5 men. The results obtained are completely in line with the current literature, which shows a certain difficulty in terms of daily activities, pain management; work-related difficulties; non-coverage of healthcare costs for medications and drugs prescribed. In the context of social capital, the bonding social capital of the patients inter-viewed was more positively perceived in the role of CVD management than by the patients' fami-lies. Another interesting result concerns the total absence of knowledge of patient associations with CVD. Thus, alongside the biographical destruction that CVD entails, there is evidence of the scarce relevance and presence of health policies capable of improving the quality of life of these people not only from a social and medical point of view but also from an economic point of view. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.3 (2003) 225-226 [Access article in PDF] Travelers in the Land of Sickness Eric J. Cassell THE PROBLEM OF knowing another person and the world in which that person lives, particularly someone with major mental illness, is addressed in this interesting and rich essay. The number of different metaphors and concepts Potter employs to describe the task of crossing into and then understanding the thoughts, (...) emotions, symptoms, constraints, context, and perspectives of another testifies to the difficulties involved.Yet, as I read the essay, it was not clear what the clinician world traveler, moral tourist, empathizer (and other categories) is supposed to do on the journey to another person. Why do we reach out to the sick person? What is it that we want to know or do that makes this trip necessary? Potter is primarily concerned with mental illness—the examples she cites are patients with schizophrenia—while my experience has in the main been with persons with physical illness, but for the moment, the differences are less important than the central lesson. The illness that the patient presents—the experience of the symptoms, the impairments, disability, and disruptions of the emotional and social existence that happen because of the disease result from an amalgam of the disease process with the specific nature of the sick person. There is no disease in pure form; there is no disease in abstract for clinicians. There is only this sick person. She correctly quotes me, because of all this, as pointing out the importance of integrating knowledge of this particular patient with the abstract knowledge of disease to understand the illness as it is expressed in this person. All to form a basis for the treatment of the patient and especially to help relieve suffering because suffering is always personal, particular, and individual. (It is important in thinking about this topic to remember that most serious diseases, psychiatric and otherwise, are chronic and take place over significant lived time. The acute schizophrenic symptoms or the acute infectious diseases, as dramatic as they are, distract attention from the importance of the place of the sick person.)In physical disease, our long (and continuing) history of separating human beings from nature and the body, and the importance medicine places on objectivity and the objective, have made the inevitable personalization of the disease and symptoms virtually invisible. After ages of explaining psychiatric diseases as the alienation of the person, and a long psychoanalytic period of finding their origins in the person, in the last 30 years these diseases have become increasingly objectified. The place of the person has been diminished as psychiatry has entered the DSM, neurotransmitter, and effective psychotropic drug era. For both physical and mental disease, however, and whatever the current ideology, the nature of person is crucial in determining the onset, diagnosis, course, treatment, and outcome of each illness. It is in order to have an impact on these crucial aspects of sickness that clinicians must come to know their patients to the degree possible. [End Page 225]But there is something more. Nancy Potter quotes a woman with schizophrenia as saying, "All that was my former self has crumbled and fallen together and a creature has emerged of whom I know nothing. She is a stranger to me... She is not real—she is not I... She is I—and because I still have myself on my hands, even if I am a maniac, I must deal with me somehow." (Potter, 2003, p. 215)Must she deal with this crazy self alone? Is that not what her doctors and caregivers are for? But how can they take care of her, protect her, keep what is left intact, and sustain her until she is (hopefully) better without knowing who she is? She makes clear in those few phrases that inside her there is a person with a past, a family, a world, a culture, a role(s) in life, relationships, a body, dreams for the future, things she does, and all the other things that make up a person. It is in... (shrink)

Background: Arthritis is very common but is not well understood. Actually, “arthritis” is not a single disease; it is an informal way of referring to joint pain or joint disease. There are more than 100 different types of arthritis and related conditions. People of all ages, sexes and races can and do have arthritis, and it is the leading cause of disability in America. More than 50 million adults and 300,000 children have some type of arthritis. It is (...) most common among women and occurs more frequently as people get older. Common arthritis joint symptoms include swelling, pain, stiffness and decreased range of motion. Symptoms may come and go. They can be mild, moderate or severe. They may stay about the same for years, but may progress or get worse over time. Severe arthritis can result in chronic pain, inability to do daily activities and make it difficult to walk or climb stairs. Arthritis can cause permanent joint changes. These changes may be visible, such as knobby finger joints, but often the damage can only be seen on X-ray. Some types of arthritis also affect the heart, eyes, lungs, kidneys and skin as well as the joints. Objectives: The main goal of this expert system is to get the appropriate diagnosis of disease and the correct treatment and give the appropriate method of treatment through several tips that concern the disease and how to treat it and we will see it through the application on the expert system. Methods: in this paper the design of the proposed Expert System which was produced to help Orthopedist in diagnosing Arthritis disease through its symptoms such as: pain on pressure in a joint , Inflammation indicated by joint swelling, Stiffness especially in the morning , Loss of flexibility of joint, Limited, joint movement, Deformity of the joints , Weight loss and fatigue , Non-specific fever and Crepitus. The proposed expert system presents an overview about Arthritis disease is given, the cause of diseases is outlined and the treatment of disease whenever possible is given out. SL5 Object Expert System language was used for designing and implementing the proposed expert system. Results: The proposed Arthritis disease diagnosis expert system was evaluated by Orthopedics students and they were satisfied with its performance. Conclusions: The Proposed expert system is very useful for Orthopedist, patients with arthritis and newly graduated Orthopedics students. (shrink)

ABSTRACT Patient self‐management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patient's preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patient's life. Four central ethical issues can be identified: 1) insufficient patient/family access to preparation that will optimize their competence to SM (...) without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled. (shrink)

The concept of professional autonomy has figured prominently in literature that addresses nursing's project of professionalization. Nursing's capacity to determine the nature and scope of its practice is related in important ways to the location of practice. Within highly structured environments such as acute‐care hospitals, nurses' professional autonomy has frequently been contested yet is often implicated by nursing's elite as a necessary condition in the construction of quality work environments. Professional concerns and management practices related to retaining experienced nurses to (...) support sustainability in healthcare delivery systems' impact on the ability of nurses to practice autonomously. Our paper focuses on the emerging field of practice of chronic disease management. We describe the complex relationships negotiated by a nurse in a theoretically autonomous practice setting as she seeks to fulfil both the requirements of a research protocol designed by physician experts representing the specialty of renal medicine, and her professional obligations to respond to the expressed needs of patients with early‐stage renal disease. We utilize a case study approach to explore particular contemporary concerns that nurses in practice confront as they attempt to accomplish professional relationships with patients central to achieving prescribed medical outcomes where nursing practice, as an element of the achievement of those outcomes, is constituted as absent or unacknowledged by the medical researchers leading the project. Implications for nursing's discourses on the professional project of autonomy will be discussed. (shrink)

Living things are often plastic during their early development and are moulded by the environment. Many human fetuses have to adapt to a limited supply of nutrients, and in doing so they permanently change their physiology and metabolism. These programmed changes may be the origins of a number of diseases in later life, including coronary heart disease, stroke, diabetes and hypertension.

Sickle cell disease is an autosomal recessive hemoglobinopathy found mainly in populations of African and Mediterranean descent, including approximately 100,000 Americans. It is also very common in Spanish-speaking regions of Central America, South America, and parts of the Caribbean, in Saudi Arabia, and in India and Sri Lanka. The disorder is characterized most commonly by lifelong recurrent unpredictable vaso-occlusive pain that may be disabling, and by chronic tissue damage and organ dysfunction. There are several genotypes of the (...) class='Hi'>disease. Although SCD pain frequency generally varies between genotypes, it also varies between subjects even within genotype. It may worsen from childhood to adulthood. It may vary by gender. Its location, timing, and severity may be unpredictable.Until recently, pain in SCD had been characterized as episodes that were acute, periodic, and relatively rare. Crises were viewed as usually associated with hospitalization. Many patients utilized hospital or emergency care for pain once per year or less, so painful episodes in SCD were called vaso-occlusive “crises.”. (shrink)

The issue of wrongful disability arises when parents face the choice whether to produce a child whose life will be unavoidably flawed by a serious disease or disorder (Down syndrome, for example, or Huntington’s disease) yet clearly worth living. The authors of From Chance to Choice claim, with certain restrictions, that the choice to produce such a child is morally wrong. They then argue that an intuitive moral approach––a “person-affecting” approach that pins wrongdoing to the harming of (...) some existing or future person––cannot account for that wrong since the choice to produce such a child cannot, under the logic of the nonidentity problem, harm that child. The authors propose that we supplement the person-affecting approach with an “impersonal” principle that takes the form of their well-known principle N. In this paper, I argue that the authors are mistaken to suppose that a plausibly articulated person-affecting approach cannot account for the wrong of wrongful disability. We can retain an intuitive, comparative, “worse for” account of harm and still identify serious harms imposed by the choice of wrongful disability. In particular, I argue that harm, both to the impaired child and to others, comes not in the form of that procreative choice’s procreative effect but rather in the form of its many distributive effects. I also argue that the rare, residual case in which a person-affecting approach would approve of the choice of wrongful disability does not function as a counterexample to that approach. As a separate matter, I address legal claims for wrongful disability, which are closely akin to claims for wrongful life. The legal claim is brought by the impaired child, not against the parents, but rather against health care providers whose negligent failure to diagnose or inform parents of an increased risk of a genetic or congenital impairment results in the birth of the impaired child. The authors’ treatment of the moral wrong that is done as impersonal in nature suggests that courts are correct to dismiss any such claim. Once we identify harm, however, the person-affecting approach can identify a clear foundation in the law for the wrongful disability claim. (shrink)

Despite repeated calls for equity, diversity, and inclusion in nursing education and the significance of disability for the vocation of nursing, the voices and experiences of nursing faculty with disabilities are largely absent from our literature. In this paper, we present a critical grounded theory of the experiences of disabled nursing faculty in academe to begin to amend this gap. Using critical disability studies as a sensitizing framework and building on prior work on racism and other systems of oppression in (...) nursing, we theorize that nursing academe is a normalized space produced by White, able‐mindbodied, and cis‐heteropatriarchal discourses that regulate the boundaries of inclusion via exclusionary social norms. Further, we describe the operations of normalcy in nursing academe, discuss implications for education and health care, and consider avenues for change. (shrink)

Background: The use of therapeutic untruths raises a number of ethical issues, which have begun to be explored to some extent, particularly in dementia care services, where their use has been found to be high. Little is known, however, about their use by health professionals working in learning disability services. Research question: The study aimed to explore the frequency of use of therapeutic untruths by student learning disability nurses, and by their colleagues; how effective the students perceived them to be (...) as a means of responding to behaviours that challenge; and their level of comfort with using them. Research design: A correlational design was used to gather data from an online version of the Best Interest Scale, adapted for a learning disability context. Participants were 30 learning disability student nurses studying at a university in the North-East of England. Ethical considerations: The study was reviewed and received ethical approval from the first author’s university ethics committee. Findings: Overall, 96% of participants reported using therapeutic untruths. ‘Omission’ was the most frequently used type of therapeutic untruths, the most effective and the type that the students felt most comfortable using. Frequency of use of therapeutic untruths correlated significantly and positively with perceived effectiveness and the level of comfort that the students felt when using them, for all types of therapeutic untruths. Conclusion: The use of therapeutic untruths by the student nurses was consistent with that found in research in dementia care services in the United Kingdom and abroad. Further research to explore the generalisability of the results to the wider context of learning disability services is needed. The study highlights that there may be a need for more formal guidance and educational input to student nurses in the use of therapeutic untruths with people with a learning disability. (shrink)

Family Medicine Groups (FMGs) are the most recently developed primary care organizations in Quebec (Canada). Nurses within FMGs play a central role for patients with chronic diseases (CD). However, this complex role and the nursing activities related to this role vary across FMGs. Inadequate knowledge of nursing activities limits the implementation of exemplary nursing practices. This study aimed to describe FMG nursing activities with patients with CD and to describe the facilitators and barriers to these activities. A multiple‐case study (...) was performed with ten nurses practicing among patients with CD in FMGs. Five data sources were used to provide an in‐depth description of nursing activities and the facilitators and barriers to the development of these activities. After qualitative data analysis, findings show that nursing activities are clustered into five domains: Global assessment of the patient, Care management, Health promotion, Nurse–physician collaboration, and Planning services for patients with CD. Activities vary depending on contextual factors identified in each case. This multiple‐case study provides a clear description of nursing activities with patients with CD. There is a need for improved nursing activities and expertise in domains of activities that are less present in FMGs, such as case management and interprofessional collaboration. (shrink)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take on what social inclusion (...) for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (shrink)

An ethical concern for fetal safety has led to the exclusion of pregnant women from clinical trials for nearly sixty years, resulting in a lack of safety and efficacy data that pregnant women with chronic diseases and their physicians can use to make informed treatment decisions. Here, we employ Catholic moral frameworks, which emphasize respect for human life and dignity, to argue that inclusion of pregnant women in clinical trials, when there is convincing preclinical evidence that the trial is (...) safe for fetal development, is morally justified, because exclusion imposes unacceptable risks on both women and their fetuses. (shrink)

In this paper I will briefly discuss flourishing and freedom, relating them to health and disease; discuss the tensions between flourishing and freedom; and exemplify how those discussions are relevant to chronic disease suffering. The concept of freedom has significant connections with the concepts of health, disability and disease. Understanding disease and disability in terms of the loss of aspects of freedom may help our understanding of the suffering that arises from chronic disease. (...) On the other hand, flourishing may require a degree of adversity. Therefore disability and disease may be conducive to flourishing. Flourishing may be understood as subordinated to freedom, as a path to freedom, or as transcending freedom. It is suggested that freedom and flourishing are expressed as mutually enhancing cycles, actualized according to the personal circumstances that will ground their expression. In a distant horizon of innocent spontaneous self-expression, flourishing and freedom may become coincident. Regarding chronic disease as a constraint on ‘species-typical’ abilities to fulfill one’s significant life interests, as well as an unwanted intrusion into the patient’s life, presents chronic disease suffering as a loss of both positive and negative freedom. The conceptual relation between flourishing and freedom will thus organise the possibilities the sufferer sees as open to their self. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and context: A case study (...) was conducted in a professional development course (‘learning circle’) for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

This study investigates the effectiveness of a preparatory programme on the acceptance of students with physical disabilities by their peers in inclusive schools in Tehran. The classrooms which had students with physical disabilities were included in this study. Two hundred and twenty?one third? to fifth?grade students (116 girls and 105 boys) were selected randomly and were placed in experimental and control groups. The Acceptance Scale (Form B) established by Voeltz was used to measure peer acceptance. Data were collected from two (...) groups before and after applying the preparatory programme. The data were analysed by t?test for independent groups and two?way ANOVA. The results showed increase of acceptance in experimental group. Also in comparing the level of acceptance in girls and boys, the results indicated that the acceptance in girls were more than boys. (shrink)

BackgroundTraditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry.Main textThis paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change of perspective from a curative to a palliative (...) approach could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. To exemplify this, we offer three different clinical scenarios: severe and enduring anorexia nervosa, treatment-refractory schizophrenia, and chronic suicidality and persistent self-injury in borderline personality disorder.ConclusionWe emphasize that many typical interventions for treatment-refractory psychiatric disorders may indeed be of a palliative nature. Furthermore, introducing traditional features of palliative care, e.g. so-called goals of care conversations, could aid even further in ensuring that caregivers, patients, and families agree on which treatment goals are to be prioritized in order to optimize quality of life in spite of severe, persistent mental disorder. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.2 (2003) 193-194 [Access article in PDF] A Comment on Christopher Ciocchetti:"The Responsibility of the Psychopathic Offender" Daniel W. Shuman Questions of responsibility for serious harm are complex and potentially divisive. The way in which we frame these questions and the criteria by which we assess answers to them are colored, in part, by the lens though which we view them. I am a (...) law professor whose writings includes issues relating to criminal responsibility of person with mentally disabilities and I come to this commentary from that perspective. For me questions of moral responsibility raise psychological and philosophical, as well as legal, questions.Ciocchetti's (2003) paper addressees the criminal responsibility of the psychopathic offender. Not sure quite what the author meant by this label, I began to try to understand the concept of psychopathic offender by picking up my DSM-IV-TR and found no reference to such a diagnostic category. Absent a handy reference in the DSM, I looked in the paper for some other definition or recognition of the category of psychopathic offender and found no satisfactory grounding in any body of sound research. Left with the author's unsupported assertions that such a category of persons exists and that they behave in ways the author asks me to accept without support, my lawyer instincts cautioned me to proceed carefully. The psychopathic offender the author describes might well exist, but I am not persuaded of that, nor would be my legal colleagues, absent proof.Next, to the author's thesis that "[t]he offender must have the capacities necessary to understand relationships to justify holding that offender responsible" (p. 176) and that because psychopaths lack this capacity they should not be held criminally responsible. Is the author proposing a new test for criminal responsibility? Certainly no test for criminal nonresponsibility based on mental disability (i.e., insanity defense) in Anglo-American jurisprudence, or any other with which I am familiar, makes status (i.e., a diagnostic category) exculpatory for criminal responsibility. Rather, every test addresses the impact of a mental illness or disorder on the cognitive or volitional capacity of the offender at the time of the offense. The author offers no reason to reject the approach taken for the last several hundred years [End Page 193] by Anglo-American jurisprudence. Moreover, to the extent that status or diagnostic category is relevant in the insanity defense in Anglo-American jurisprudence, character or personality disorders (the genus to which I take it that psychopathy belongs) are often specifically excluded from consideration. For example, the Texas Penal Code (Tex. Penal Code Ann. § 8.01 (Vernon 1994)) states that:It is an affirmative defense to prosecution that, at the time of the conduct charged, the actor, as a result of a severe mental disease or defect, did not know that his conduct was wrong. The term "mental disease or defect" does not include an abnormality manifested only by repeated criminal or otherwise antisocial conduct.The federal Insanity Defense Reform Act raises the same issue: The government relies on the legislative history of 18 U.S.C. § 17, which states: "The concept of severity was added to emphasize that non-psychotic behavior disorders or neuroses such as an 'inadequate personality,' 'immature personality,' or a pattern of 'antisocial tendencies' do not constitute the defense.".... The government argues that because Dr. Lorenz would have testified that Salava was not psychotic but suffered from antisocial personality disorder, his testimony was not relevant to either prong of the insanity defense under the statute.... As a general matter, the government's point is well-taken. It seems clear that Congress intended by its inclusion of the modifier "severe" to place certain "disorders" outside the purview of the insanity defense altogether. United States v. Salava, 978 F.2d 320, 323 (7th Cir. 1992) Nowhere in the paper does Chiochetti acknowledge or address these societal judgments of moral responsibility that have already rejected a far more modest version of his proposal in categorically ruling out character or personality disorders from inclusion as... (shrink)

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

Teachers’ positive attitudes are an essential element for the successful inclusion of students who have disabilities in schools with their peers who do not have disabilities. The current quantitative study examines middle school teachers’ attitudes toward the inclusion of students with disabilities in regular schools in Saudi Arabia and the factors that affect their attitudes. Middle school teachers from schools in Riyadh responded to a questionnaire regarding their opinions relative to the integration of students with disabilities. The results indicate that (...) middle school teachers have a neutral attitude toward the inclusion of students with disabilities in regular schools. Moreover, teacher-related factors such as gender, position, and experience do not affect teacher attitudes toward inclusion. In contrast, training in inclusion plays a significant role in middle school teachers’ attitudes toward inclusion of students with disabilities. The implications of the results and suggestions for further research are discussed in the study. (shrink)

Abortion prohibitions in some states include carve-outs based on the medical condition of either the mother or the fetus. These carve-outs, however, may be couched in limiting language structured by legislators rather than in language understandable in the context of medical care. In circumstances where legislative bodies fail to adequately incorporate medical professionals in the drafting of medical laws, the resulting vagueness or ambiguity may lead to a lack of utility or viability. This paper considers the consequences of such legislative (...) misreading of medicine. It does so with a particular example, Utah’s abortion trigger law, 2020 Senate Bill 174 (S.B. 174). S.B. 174 was enacted in 2020 (currently enjoined pending the outcome of _Planned Parenthood Association of Utah v. State of Utah_) and includes an exception for serious fetal anomaly—in other words, disability. While Utah is not alone in its inclusion of a disability exception for abortion, S.B. 174 is unique in the language it uses to carve out this exception: the law requires that the fetus has a “uniformly diagnosable and uniformly lethal” defect. This article explores the medical-legal mismatch in S.B. 174 through an analysis of the statute’s legislative history and its language, an academic and legal database review, and an application of the statutory language to multiple serious genetic diagnoses. In doing so, this paper unpacks just how mismatched these terms are and reveals the massive gap the law will leave between the legal consequences and the medical realities of abortion. (shrink)

Rare neuromuscular diseases are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on the QoL (...) levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group, which participated in the intervention, and a control wait list group. QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability. (shrink)

This paper argues that much of the growing body of research that claims to address inclusion for disabled students is not new, but rather a re-articulation of old ideas which fail to do sufficient justice to the demands of the 'new times,. The paper concludes with an outline of a research agenda that is more comprehensive in scope and more finely tuned into the politics of 'identity'.

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how (...) they interrelate and influence each other. (shrink)

This paper chronicles the author’s experience, as an instructor and as an administrator, taking up the Americans with Disabilities Act (ADA) and implementing changes in the curriculum to accommodate a logic student with dyslexia. The author discusses his misconceptions about dyslexia and his attempts to determine more precisely how it affected his student’s reading abilities. While his student struggled with abstract symbol systems (e.g. standard logical notation), the student had no difficulty with sequences of letters. The author elected to teach (...) the introductory logic course with a logical notation composed entirely of letters, namely Lukasiewicz’ notation. The author details the work that went into learning this notation and teaching an introductory logic course in it, including overviews of lessons on semantics, syntax, and introduction/elimination rules for proofs. The student learned the material very quickly and with great success, progressing to moderately sophisticated proofs. The author reflects on how this reformulated version of an introductory logic course squares with the ADA’s language of “reasonable accommodations” and implores professional philosophers to take seriously what the ADA means for their pedagogy. (shrink)

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical and intellectual (...) impairments, for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided. (shrink)

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

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

This paper examines the ethical issues of the inclusion of workers with disabilities in the workplace with a cross-fertilization approach between organization studies, the ethics of care, and a movement from the field of architecture and design that is called Universal Design (UD). It explores how organizations can use UD to develop more inclusive workplaces, first by applying UD principles to workspaces and second by showing how UD implies an integrative understanding of inclusion from the workspace to the workplace. Moreover, (...) this paper discusses the ethical challenges and complexities that this design practice faces in regard to its applicability to diverse organizations and industries. Finally, this paper demonstrates that inclusion requires abandoning any notion of a perfect, productive body and, therefore, recognizing our shared vulnerability and fundamental interdependence in the workplace. (shrink)

Providing an inclusive and quality education for all contributes toward the Sustainable Development Goals of the United Nations. High-quality learning environments based on what works in education benefit all students and can be particularly beneficial for children with disabilities. This article contributes to advance knowledge to enhance the quality of education of students with disabilities that are educated in special schools. This research analyses in which ways, if any, interactive learning environments can be developed in special schools and create better (...) learning opportunities for children with disabilities. A case study was conducted with students with disabilities (N = 36) and teaching staff in a special school, involving interviews and focus groups. We argue that rethinking the learning context by introducing instruction models based on interaction benefit children with disabilities and provide high-quality learning and safe and supportive relationships for these students, thereby promoting their educational and social inclusion. (shrink)

Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients (...) or their surroundings. Research question: What do support staff consider as restraints on freedom and how do they justify these restraints? Research design: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Findings: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. Discussion: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client’s competence. Conclusion: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client. (shrink)

There is a lack of writing on the issue of the education rights of people with disabilities by authors of any theoretical persuasion. While the deficiency of theory may be explained by a variety of historical, philosophical and practical considerations, it is a deficiency which must be addressed. Otherwise, any statement of rights rings out as hollow rhetoric unsupported by sound reason and moral rectitude. This paper attempts to address this deficiency in education rights theory by postulating a communitarian theory (...) of the education rights of people with disabilities. The theory is developed from communitarian writings on the role of education in democratic society. The communitarian school, like the community within which it nests, is inclusive. Schools both reflect and model the shape of communitarian society and have primary responsibility for teaching the knowledge and virtues which will allow citizens to belong to and function within society. Communitarians emphasise responsibilities, however, as the corollary of rights and may require the individual good to yield to the community good when the hard cases arise. The article not only explains the basis of the right to an inclusive education, therefore, but also engages with the difficult issue of when such a right may not be enforceable. (shrink)

Introduction Outbreaks of serious communicable infectious diseases remain a major global medical problem and force healthcare workers to make hard choices with limited information, resources and time. While information regarding physicians’ opinions about such dilemmas is available, research discussing students’ opinions is more limited. Methods Medical students were surveyed about their willingness to perform medical procedures on patients with communicable diseases as students and as physicians. Students were asked about their opinions regarding the duty to treat in such cases. (...) Results 74% of respondents felt that by deciding to enter medical school they were morally obliged to treat any patient despite the risks. Students’ willingness to treat as physicians is significantly higher than their willingness to treat as students. HIV was significantly the most tolerated disease with respect to performing mouth to mouth resuscitation. Among preclinical students, we found that willingness to treat during the later years is significantly greater than during the earlier years. Among clinical students, the opposite was observed. Discussion Students’ greater willingness to treat as physicians is mostly attributed to perceptions of higher obligations as a qualified doctor. There is greater but not total willingness to perform resuscitation on patients with HIV relative to other diseases. The increased willingness of preclinical students and the decreased willingness of clinical students both emphasise the importance of patient–physician communication and ethics studies during medical school. (shrink)