An area agency on aging (AAA) is a public or private nonprofit organization designated by the state to address the needs and concerns of all older persons at the regional and local levels in the United States (Administration for Community Living (ACL) 2019). AAAs have a successful history of developing, coordinating, and implementing comprehensive networks of services and programs that enrich communities and the lives of older adults. AAAs were established through a provision of the (...) class='Hi'>Older Americans Act (OAA 1965), which was signed into law by President Lyndon B. Johnson. Specifically, AAAs were created with the 1973 reauthorization of the OAA. AAAs create the infrastructure to execute comprehensive long-term support services that ensure the independence of older adults. (shrink)

An area agency on aging is a public or private nonprofit organization designated by the state to address the needs and concerns of all older persons at the regional and local levels in the United States 2019). AAAs have a successful history of developing, coordinating, and implementing comprehensive networks of services and programs that enrich communities and the lives of older adults. AAAs were established through a provision of the Older Americans Act, which was signed (...) into law by President Lyndon B. Johnson. Specifically, AAAs were created with the 1973 reauthorization of the OAA. AAAs create the infrastructure to execute comprehensive long-term support services that ensure the independence of older adults. (shrink)

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

Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion (...) is good. However, that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. (shrink)

This article aims to present the problem of the impact of artificial intelligence on respect for human dignity in the sphere of care for people who, for various reasons, are described as particularly vulnerable, especially seniors and people with various disabilities. In recent years, various initiatives and works have been undertaken on the European scene to define the directions in which the development and use of artificial intelligence should go. According to the human-centric approach, artificial intelligence (...) should be developed, used and monitored with people in mind, their needs and rights. It is artificial intelligence that should adapt to the rules set by people, not the other way around. The source of all human rights and freedoms is respect for human dignity. This is evidenced by numerous European, international, national regulations and documents. Respecting this value is also one of the works on the AI development. One of the areas of our life into which AI enters more and more boldly and which in the near future, due to demographic reasons and aging population, may be almost dominated by modern technologies, is the medical and care system. The usefulness of industrial co-robots made us think about the possibility of using similar devices in the non-industrial sphere, including in the sphere of care, nursing and therapy. Actually, despite the impressive development of technology and AI, intelligent robots/devices used for care, nursing or therapy (so-called care/nursing or therapy robots) perform rather simple activities. They provide information, navigate, bring something and give it (e.g. medicines, food), help to get up. They are an important support for medical staff in this respect. Performing tasks that are more complex in terms of technology and movement, such as feeding, washing, intimate hygiene, dressing or undressing, is still beyond the reach of the currently used robots. The question we must ask ourselves is whether, in the future, care robots will be able to perform such tasks, and should they do so? Will this lead to the replacement of human medical personnel in the performance of the above-mentioned activities with such robots. Would anyone want to be "looked after" by a soulless machine? Should potential wards/patients, in other words all of us in fact, have the right to object to being taken into the care of an intelligent robot? There is no doubt that intelligent robots have great potential, especially when it comes to ensuring or maintaining the independence or mobility of people with various health limitations. However, we must not forget about the risks and dangers they may generate. Even a simple robot generates serious legal and ethical problems. Who should be liable for damage caused in connection with improper care performed with the participation of a robot? Robots based on AI systems are able to collect a significant amount of sensitive data, for example through the face and speech recognition function. There is considerable scope for abuse in this area, not only in terms of personal data protection but also in terms of informational self-determination, privacy and dignity. Bearing in mind the above risks, the creation of a new right to object to being looked after by a robot should be considered. (shrink)

Most of us want to have children. We want them to be healthy and have a good start in life. One way to achieve this goal is to use preimplantation genetic diagnosis . PGD enables people engaged in the process of in vitro fertilisation to acquire information about the genetic constitution of an early embryo. On the basis of this information, a decision can be made to transfer embryos without genetic defects to the uterus and terminate (...) those with genetic defects.1However, is it morally acceptable to use PGD to reduce the probability of children with severe genetic diseases being born? Is the current routine use of PGD in public healthcare services to select against severe genetic diseases like anencephaly, spina bifida, cystic fibrosis and Down’s syndrome morally acceptable?These are complex questions involving a range of difficult ethical issues—for instance, critical discussions about the morality of embryo research and embryo termination.2 They also involve awkward conceptual issues concerning such matters as the meaning of words such as “disability”3 and “severe” in “severe genetic diseases”,4 which will not be discussed here.In this paper I examine an argument which aims to show that efforts to prevent the birth of severely disabled children using PGD are morally unacceptable. Essentially, this argument appeals to our concern for disabled people and the belief that PGD, through a slippery slope process, will have bad consequences for them. I conclude that the argument is problematic for a number of reasons. But before I examine the argument itself, it will be helpful to separate two types of slippery slope argument since these involve different kinds of reasoning.TWO TYPES OF ARGUMENTMany of the arguments against PGD point to the bad consequences it can be expected to have for disabled people. Central to all these …. (shrink)

SCHOFIELD I, TOLSON D and FLEMING V. Nursing Inquiry 2012; 19: 165–176 [Epub ahead of print]How nurses understand and care for older people with delirium in the acute hospital: a Critical Discourse AnalysisDelirium is a common presentation of deteriorating health in older people. It is potentially deleterious in terms of patient experience and clinical outcomes. Much of what is known about delirium is through positivist research, which forms the evidence base for disease‐based classification systems (...) and clinical guidelines. There is little systematic study of nurses’ day‐to‐day practice of nursing patients with delirium. The aim was to uncover the kinds of knowledge that informs nurses’ care and to explicate the basis of that knowledge. Critical Discourse Analysis is underpinned by the premise that powerful interests within society mediate how social practices are constructed. Links were made between the grammatical and lexical features of nurses’ language about care in interviews and naturalistic settings, and the healthcare context. Care focused on the continuous surveillance of patients with delirium by nurses themselves or vicariously through other patients, and containment. Nurses influenced by major discourses of risk reduction and safety, constructed patients with delirium as risk objects. The philosophy of person‐centred and dignified care advocated in nursing literature and government policy is an emerging discourse, though little evident in the data. The current dominant discourses on safety must give space to discourses of dignity and compassion. (shrink)

The disability viewpoint is the fundamental for understanding social justice in a given population. Disability rights need to be obeyed in the inclusive preparedness and response to all the disasters or during the crisis period including COVID-19 pandemic. COVID-19 pandemic jeopardized the health and rehabilitation services globally. The impact is much more in low resource developing countries like Bangladesh. In general, people with disability (PWD) suffer from multiple medical and rehabilitation complications and they need frequent rehabilitation consultations (...) or hospital admissions in comparison to people without disability. As a developing country, Bangladesh has poor ratios of doctors, nurses and technologists of 1:0.4:0.24 (WHO: 1:3:5) to face the COVID-19 challenge. Rehabilitation services have been disrupted in almost two-thirds (63%) of countries of the world. Even though rehabilitation is the key to recovery following severe illness from COVID-19. There are many concerns and debates about the preparedness, response and mitigation the process of COVID-19 on the part of the national government. According to recent study reports, the lives of about 100% of PWD have been impacted by the COVID-19 pandemic. COVID-19 National Technical Advisory Committee is working for strategic planning, response and mitigation process but omission of a representative of PWD or a rehabilitation physician in the committee has created much dissatisfaction. The difficult COVID-19 testing process due to country wide shutdown of rehabilitation essential services and central pulling of rehabilitation physicians have side lined the PWD inclusiveness. It is expected that the rehabilitation preparedness, response and mitigation of the pandemic should be based on an ethics driven process. (shrink)

This paper will explore the power of history in affecting contemporary caring practice. Drawing on the author's personal experience as a social worker, researcher and parent of a daughter with learning disabilities, the article will consider the ways in which the experience of (and to an extent, nostalgia for) the ?heady days? of de-institutionalisation continues to influence staff perceptions about their work. In doing so, this article will critique normative notions of choice and control that are at (...) the heart of current moves towards self-directed support and personalised services. The author contends that staff who support people who have learning disabilities need something with which to compare and validate their practice. In the 1980s the hospitals were easily identifiable as something negative with which practice ?in the community? could be compared. In the twenty-first century the need for a comparator is still there, but the hospitals and many of their associated structures such as Adult Training Centres have gone. The paper argues that the family can be a contemporary structure against which current practice can be measured. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and (...) increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. Trial RegistrationISRCTN89993391. (shrink)

Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also (...) a number of ethical issues. The aim of this paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics (...) framework that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

Values such as respect for autonomy, safety, enablement, independence, privacy and social connectedness should be reflected in the design of social robots. The same values should affect the process by which robots are introduced into the homes of older people to support independent living. These values may, however, be in tension. We explored what potential users thought about these values, and how the tensions between them could be resolved. With the help of partners in the ACCOMPANY (...) project, 21 focus groups were convened in France, the Netherlands and the UK. These groups consisted of: older people, informal carers and formal carers of older people. The participants were asked to discuss scenarios in which there is a conflict between older people and others over how a robot should be used, these conflicts reflecting tensions between values. Participants favoured compromise, persuasion and negotiation as a means of reaching agreement. Roles and related role-norms for the robot were thought relevant to resolving tensions, as were hypothetical agreements between users and robot-providers before the robot is introduced into the home. Participants’ understanding of each of the values—autonomy, safety, enablement, independence, privacy and social connectedness—is reported. Participants tended to agree that autonomy often has priority over the other values, with the exception in certain cases of safety. The second part of the paper discusses how the values could be incorporated into the design of social robots and operationalised in line with the views expressed by the participants. (shrink)

Euthanasia and assisted suicide have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: voluntary and well-considered request; unbearable suffering without prospect of improvement; informing the patient; lack of a reasonable alternative; independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees. The purpose of this (...) study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. The 416 case summaries available on the RTE website were searched for intellectual disability and autism spectrum disorder. Direct content analysis was used on these nine cases. Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards. (shrink)

Feminist research on community care and ‘informal carers’ identified this as a women's issue but failed to address the interests and experiences of older and disabled women – those who received ‘care’ One consequence is that such feminist research has implicitly, and sometimes explicitly, undermined disabled women's rights to a home, children and personal relationships. Using qualitative research, the article highlights the actual experience of women whose physical impairment means that they need help with daily living activities, looking (...) at the different circumstances in which such help is received. The disability movement's concept of ‘independent living’ raises particular issues for disabled women. ‘Independent living’ is about having choice and control over the assistance needed, rather than necessarily doing everything for yourself. However, gender inequalities may also inhibit the choice and control that women have in their lives. Assistance can be given within a personal relationship as an expression of love, but disabled women may also experience abusive, restrictive or exploitative relationships. Public services do not generally provide assistance in a way which enables a woman to have choice and control in her life, or even to carry out child-caring or homemaking tasks. The research on the various ways of receiving personal assistance found that those women who were able to purchase their own help were most likely to be living independently, in the sense of exerting choice and control in their lives. Feminist research can help to create a space for disabled women's absent voices, and add to the pressure for change in the way that personal assistance needs are met. This is a human and civil rights issue which has a key impact on the control that disabled women have over their lives. (shrink)

The Americans With Disabilities Act (ADA) promotes social justice by protecting disabled persons from discrimination and prejudice. It seeks equality of opportunity for them and protects their well being by giving them fair access to goods, services and benefits. These rights are circumscribed in the ADA, however, by constraints of cost, efficiency, utility, and certain social mores. The ADA offers little direction about how to set priorities when these values come into conflict, or about whether (...) equality of opportunity favors equivalent or preferential treatment for disadvantaged people. Until these ambiguities and potential value conflicts are resolved, a central moral and social problem remains unresolved: How can we demonstrate commitment to the rights and welfare of those with severe disabilities while placing fair limits upon their claims? Five special concerns are discussed: (1) eligibility and the allocation of health care; (2) the meaning of ‘qualified but disabled’ in employing people with mental disabilities; (3) equal opportunity and problems of envy and malingering; (4) ADA accommodation and public protection through testing and licensure; and (5) ADA protection and problems of backlash. Rather than simply wait to see what courts and administrative agencies decide, we should evaluate the moral conflicts, articulate criteria, and help make some difficult choices on morally defensible grounds. Keywords: disabled, health benefit plans, health care rationing, health care reform, health priorities, health services accessibility, Oregon, Rawls, selection bias, social justice CiteULike Connotea Del.icio.us What's this? (shrink)

Type 2 diabetes has been considered a public health threat due to its growing prevalence, particularly in the older population. It is important to know the effects of psychosocial stress and its potential consequences for some basic cognitive processes that are important in daily life. Currently, there is very little information about how people with T2D face acute psychosocial stressors, and even less about how their response affects working memory, which is essential for (...) their functionality and independence. Our aim was to characterize the response to an acute laboratory psychosocial stressor and its effects on WM in older people with T2D. Fifty participants with T2D from 52 to 77 years old were randomly assigned to a stress or control condition. Mood and physiological responses to tasks were measured. In addition, participants completed a WM test before and after the stress or control task. Our results showed that the TSST elicited higher negative affect and greater C and sAA responses than the control task. No significant differences in WM were observed depending on the exposure to stress or the control task. Finally, participants who showed higher C and sAA responses to the stressor had lower WM performance. Our results indicate that medically treated older adults with T2D show clear, typical mood and physiological responses to an acute psychosocial stressor. Finally, the lack of acute psychosocial stress effects on WM suggests that it could be related to aging and not to this disease, at least when T2D is adequately treated. (shrink)

Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This (...) ethical framework is derived from the basic ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India. (shrink)

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we (...) analysed how their expression of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

The ethic of care provides not only a basis for understanding relationships of care at the micro level but also a potent form of political ethics, relevant to the development of welfare services. Williams (2001), for example, argues that the concept of care has the capacity to be a central referent in social policy?a point at which social and cultural transformations meet with the changing relations of welfare (Williams 2001, p. 470). English social care services are currently (...) in another period of change precipitated by the ?personalisation agenda?. This agenda is seen as having the potential to revolutionise social care, to create the conditions needed to tailor services to individual needs, and to give service users greater choice and control, including, where possible, control over their own service budgets or direct possession and management of care funds. These developments are inextricably linked to broader economic and social trends, key amongst which are the ageing of the population and changing economic conditions affecting both the labour market and the market for care services. This article applies the feminist ethic of care to an analysis of the personalisation agenda in the context of care for dependent older people. It highlights fundamental political questions posed concerning the nature and extent of older people's need for care, responsibility for meeting these needs and the associated costs. It questions whether the personalisation agenda could potentially offer a more responsive form of care, by placing more power and control in older people's hands. Key points considered are the individualisation of care and the ways in which control is conceptualised. The article concludes with an assessment of the feminist ethic of care as a basis for policy evaluation. (shrink)

In recent years there has been increased focus on supporting the safety and wellbeing of children and young people with disability. This paper reports on a study that asked children and young people with disability and adults who work with them about practices that support their wellbeing and safety, including barriers and enablers to ethical practice. We used the theory of practice architectures to unpack the practices. Findings point to a range of practices that (...) both young people and adults regarded as important in creating the cultural conditions for young people to feel happy, safe and well, albeit placing different emphases on particular practices. Several tensions within and between these practices and the evolving requirements of disability and safeguarding policy environments were also apparent. While often not well articulated, the inherent tensions have implications when considering what children and young people need, particularly those with higher support needs. Findings suggest closer attention needs to be given to the intersection between individual and systemic factors in shaping ethical practice aimed at supporting the wellbeing and safety of children and young people with disability. (shrink)

An increase in the number of older people with dementia is currently a trend around the world. In low and middle countries, effective public health services are not yet well‐developed, and family care‐givers may be overwhelmed by the requirements of care. This paper has two purposes: to share findings from an ethnographic study about family dementia care practices in Brazil and to draw attention to the significance of the materiality of care practices in the (...) family context. The study was conducted in Belo Horizonte, Brazil. We describe the care trajectory of one family and, analysing data using the insights of Actor Network Theory, show the significance of objects in a networked relation of care. In particular, we show how incontinence products such as adult diapers assume different positions in the network, acting as either mediator or intermediary of care in relation to other elements of the network composed of family members and their living situation, the person with dementia herself, the doctor, and Brazilian health policies. Although the diaper is often seen as an ordinary object for care providers, its participation in a care network shapes relations, activating conflict, financial constraint, and disciplining the body of the person with dementia. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” (...) medical and social service professionals, are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

The field of Neuroscience has experienced a growing interest in recent decades, which has led to an exponential growth in the amount of related information made available online as well as the market for Neuroscience-related courses. While this type of knowledge can be greatly beneficial to people working in science, health and education, it can also benefit individuals in other areas. For example, neuroscience knowledge can help people from all fields better understand and critique information (...) class='Hi'>about new discoveries or products, and even make better education- and health-related decisions. Online platforms are fertile ground for the creation and spread of fake information, including misrepresentations of scientific knowledge or new discoveries. These types of false information, once spread, can be difficult to tear down and may have widespread negative effects. For example, even scientists are less likely to access retractions of peer-reviewed articles than the original discredited articles. In this study we surveyed general knowledge about neuroscience and the brain among volunteers in Brazil, Latin America’s largest country. We were interested in evaluating the prevalence of neuromyths in this region, and test whether knowledge/neuromyth endorsement differs by age, region, and/or profession. To that end, we created a 30-item survey that was anonymously answered online by 1128 individuals. While younger people generally responded more accurately than people 60 and older, people in the North responded significantly worse than those in the South and Southeast. Most interestingly, people in the biological sciences consistently responded best, but people in the health sciences responded no better than people in the exact sciences or humanities. Furthermore, years of schooling did not correlate with performance, suggesting that quantity may surpass quality when it comes to extension or graduate-level course offerings. We discuss how our findings can help guide efforts toward improving access to quality information and training in the region. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” (...) medical and social service professionals, are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

The aim of this review was to analyse the empirical studies that focus on ethics in nursing care for older people, scoping the need and areas for further study. A search of the MEDLINE and CINAHL databases (earliest to August 2009) was conducted using the the keywords: ethic* and nursing or care or caring and elderly or aged or older. After a four-stage process, 71 empirical articles were included in the review, with informants ranging from elderly (...) people to relatives, caregivers, managers and students in care settings. The review focusses on the concepts, contexts, methods and validity of these studies. Based on the analysis, the reviewed research seems to be fragmented and multifaceted, focussing on selected issues such as autonomy, self-determination and informed consent. No large research programs or research traditions were found so it was not possible to draw any conclusions about suitable methods, study designs or instruments of measurement for use in this research area. (shrink)

The authors of these papers vary in age, nationality and professional background. They share a belief that all too often older people are not treated justly or fairly, and also a belief that this is particularly true with regard to a proper respect for their dignity as people and a proper allocation of medical and social resources. Their papers, in various ways, give evidence as to what is happening and arguments, based on philosophical ethics, as to (...) why it is wrong. The authors also have a range of proposals, backed by argument and evidence, and drawing on factual material as well as philosophical argument, as to what could be done to improve the situation. This is a book for anyone, whether themselves elderly, looking after an older person, professionally involved in working with older people, or simply realising that one day they will be old, who wants to learn about what is wrong with the present situation and how it might be made better. (shrink)

Cost effectiveness analysis is a tool for evaluating the aggregate benefits of medical treatments, health care services, and public health programs. Its opponents often claim that its use leads to unfair discrimination against people with disabilities. My aim in this paper is to clarify the conditions under which this might be so. I present some ways in which the use of cost effectiveness analysis can lead to discrimination and suggest why these forms of discrimination may (...) be unfair. I also discuss some proposals for avoiding discrimination without rejecting cost effectiveness analysis altogether. I argue that none of these proposals is ultimately convincing. I describe a different approach to the problem and conclude by answering the question in the title. (shrink)

This paper spotlights ways in which sexual capacities relate to central human capabilities, such as the ability to generate a personally meaningful story of one’s life; be physically, mentally and emotionally healthy; experience bodily integrity; affiliate and bond with others; feel and express a range of human emotions; and choose a plan of life. It sets forth a dignity-based argument for affording older people access to sex robots as part of reasonable efforts to support their central human (...) capabilities at a floor level. The argument develops stepwise: (1) first, I dispel ageism and negative stereotypes about later-life sexuality, showing their deep historical roots in medicine and science; (2) second, I set forth a positive argument, grounded in capability accounts of justice, for deploying sex robots for older people with disabilities; (3) finally, after responding to objections, I conclude that sex robots are a reasonable way to support later-life sexuality for persons with disabilities. While often depicted as a product for younger, able-bodied people, this paper is a bid for reimagining sex robots as a product for older, disabled people. (shrink)

Definition of the problem Death and suicide wishes of older people represent a relevant and morally challenging issue for nurses. Especially in the context of wishes for assisted suicide, the risk for the development of moral uncertainty or even moral distress grows. As suicide rates and requests for assisted suicide are particularly high among people 65 years of age or older, the topic proves to be particularly relevant to the settings of long-term community and nursing home (...) care. At the same time, this fact underlines the importance of suicide prevention, which has recently been strengthened by the federal government, with the intention of launching a national strategy and a corresponding law. Arguments According to our hypothesis, the situational confrontation of nursing professionals with death and suicide wishes may cause an ethical field of tension between an unprejudiced, open, empathetic and respectful acceptance of death and suicide wishes on the one hand and the goal of suicide prevention on the other. The legal uncertainties in regards to the practice of assisted suicide, which currently prevails in practice, may intensify this risk. International studies point to the potential of moral distress of nurses when confronted with death and suicide wishes. Conclusion These findings and the reference to the current legal uncertainties and framework conditions in the national (German) context underpin the importance of the professional discussion about the topic, the need to sensitise (future) nursing professionals to potential ethical tensions and to enable them to deal with the accompanying moral uncertainty in a professional and competent manner. (shrink)

The legalization of cannabis in Canada instantiates principles of harm-reduction and safe supply. However, in-depth understanding of values at stake and attitudes toward legalization were not part of extensive democratic deliberation. Through a qualitative exploratory study, we undertook 48 semi-structured interviews with three Canadian stakeholder groups to explore opinions and values with respect to the legalization of cannabis: (1) members of the general public, (2) people with lived experience of addiction and (3) clinicians with (...) experience treating patients with addiction. Across all groups, participants tended to be in favor of legalization, but particular opinions rested on their viewpoint as stakeholders. Clinicians considered the way legalization would affect an individual’s health and its potential for increasing rates of addiction on a larger scale. People with lived experience of addiction cited personal autonomy more than other groups and stressed the need to have access to quality information to make truly informed decisions. Alternatively, members of the public considered legalization positive or negative in light of whether one’s addiction affected others. We elaborate on and discuss how scientific evidence about drug use impact values relates and how can different arguments play in democratic debates about legalization. (shrink)

This study focuses on issues of elder abuse in residential settings. Violation of ethical principles is shown in the results of this quantitative study aimed at defining the extent, nature and causes of such abuse by employees’ unethical conduct towards clients in senior homes (i.e. residential nursing homes) in the Moravian-Silesian region of the Czech Republic. The research sample comprised 454 employees and 488 clients from 12 residential homes for older people. The data were collected from interviews (...) class='Hi'>with clients, who also received a questionnaire concerning their satisfaction with the institution. Two questionnaires were administered to the employees, one based on a pilot qualitative study and a second to investigate burnout. Outcomes were assessed according to the extent and form of elder abuse, the causes of elder abuse and the violation of basic ethical principles. The responses, in particular those of employees, revealed both psychological and physical abuse of older clients, and thus violation of two basic principles: respect for the person and non-maleficence. The group at risk of elder abuse comprised aggressive and dissatisfied clients, as well as those with mental problems and dementia. The employees most at risk of being abusers were those who had been employed in institutional care for more than five years, had inadequate knowledge about social services and suffered from burnout. The prevention of elder abuse is recommended to be through education focused on ethical principles, increasing employees’ satisfaction by promoting a friendly and safe organizational culture, and providing adequate working conditions. (shrink)

Background As more people are living longer, they become frail and are affected by multi-morbidity, resulting in increased demands from the ambulance service. Being vulnerable, older patients may have reduced decision-making capacity, despite still wanting to be involved in decision-making about their care. Their needs may be complex and difficult to assess, and do not always correspond with ambulance assessment protocols. When needing an ambulance, older patients encounter ambulance clinicians who are under high workloads and (...) primarily consider themselves as emergency medical care providers. This situates them in the struggle between differing expectations, and ethical conflicts may arise. To resolve these, providing ethical care, focussing on interpersonal relationships and using ethical competence is needed. However, it is not known whether ambulance clinicians possess the ethical competence required to provide ethical care. Thus, the aim of this study was to deductively explore their ethical competence when caring for older patients with reduced decision-making ability. Methods A qualitative deductive and exploratory design was used to analyse dyadic interviews with ambulance clinicians. A literature review, defining ethical competence as comprising ethical sensitivity, ethical knowledge, ethical reflection, ethical decision-making, ethical action and ethical behaviour, was used as a structured categorization matrix for the analysis. Results Ambulance clinicians possess ethical competence in terms of their ethical knowledge, highlighting the need for establishing an interpersonal relationship with the older patients. To establish this, they use ethical sensitivity to interpret the patients’ needs. Doing this, they are aware of their ethical behaviour, signifying how they must act respectfully and provide the necessary time for listening and interacting. Conclusions Ambulance clinicians fail to see their gut feeling as a professional ethical competence, which might hinder them from reacting to unethical ways of working. Further, they lack ethical reflection regarding the benefits and disadvantages of paternalism, which reduces their ability to perform ethical decision-making. Moreover, their ethical knowledge is hampered by an ageist approach to older patients, which also has consequences for their ethical action. Finally, ambulance clinicians show deficiencies regarding their ethical reflections, as they reflect merely on their own actions, rather than on their values. (shrink)

Research has documented the influence of ALS patients families’ attitudes on patients’ decision to accept or reject TIV, a treatment that in many cases will allow them to live long enough to experience locked-in syndrome ; under Japanese law the use of a ventilator cannot be terminated once it is essential to a patient’s survival, so to choose TIV means to choose the possibility of entering a locked-in state. Previous studies have not, however, elucidated the changes in family members’ attitudes (...) that take place after they receive pertinent information about the social systems and services available to them. This study aims to fill this gap by collecting and analyzing patients’ and family members’ narratives. In Japan, about 30% of ALS patients utilize TIV. This rate is much higher than in most other developed countries. Patients’ narratives illuminate the psychological and especially the contextual factors of their decision-making. Many Japanese patients who currently use a ventilator say that their family members encouraged them to prolong their lives through ventilation. These family members have done so because patients are able to use long-term ventilation for only ¥1000 per month, and can also access the latest communication devices and round the clock caregiver services in their homes at very low cost. Japanese caregivers who are supported by social systems and services including communication assistance, empowering factors such as patients’ associations, care provided by people outside the patient’s family, and a public nursing care system are able to encourage patients to decide to use longterm ventilation. (shrink)

In 2008, the Minister of Health for Iceland issued a new regulation intended to govern assessment practices related to placement in nursing homes. One of the aims of the regulation was to ensure that those with the most severe need would have priority. This would be achieved, in part, by requiring older people to exhaust all available community‐based service options before an assessment for placement would even take place. The new regulation was received with some hostility (...) and criticism on the part of older people and their relatives, who described the changed expectations as ‘abandonment’ by the authorities. We present our analysis of these changes by examining how older people and families are reconfigured through the new policy and argue that this ‘new’ practice of de‐institutionalization is underpinned by a shifting epistemic and normative context that is working to create a new identity and a different way of life in advanced age in Iceland. The analysis has implications for other nations as well, as much policy related to older people is broadly informed by this idea that ‘home is best’, that is, the idea that more care simply needs to happen outside of institutional settings. (shrink)

Domestic and sexual violence research has traditionally been associated with feminist qualitative methodology; however, quantitative methods are increasingly used by feminists in research examining the prevalence of and issues related to rape and sexual assault, either as standalone methods or in combination with other, qualitative methods (i.e. mixed methods). Freedom of Information (FOI) requests are a data collection tool that allow citizens to obtain data held by public authorities in the UK and are particularly useful for (...) uncovering information on marginalised groups who may be difficult to recruit in qualitative research. Whilst they are frequently used by journalists, their potential is yet to be fully realised by social researchers. This paper reflects on the use of Freedom of Information requests in a mixed-method feminist study exploring sexual violence against people aged 60 years and over. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. (...) Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

This paper uses themes from Catholic social teaching to challenge Church and society to prioritize a group that is left behind by social injustice: people with intellectual disabilities. It provides background information on intellectual disability, summarizes moral principles of Catholic social doctrine, describes sociological facts about how people with intellectual disabilities are left behind by social factors, and prescribes actionable solutions for treating them as equal members of society. The goal is to (...) identify how to shape a society at all socio-ecological levels in ways that better protect the dignity, solidarity, and participation of people with intellectual disabilities. Although the analysis references the US and is limited to intellectual disabilities, its lessons apply to other countries and disabilities as well. (shrink)

Relationships are central to enacting person‐centred care of the older person with cognitive impairment. A fuller understanding of relationships and the role they play facilitating wellness and preserving personhood is critical if we are to unleash the productive potential of nursing research and person‐centred care. In this article, we target the acute care setting because much of the work about relationships and older people with cognitive impairment has tended to focus on relationships in long‐term (...) care. The acute care setting is characterized by archetypal constraints which differentiate it from long‐term care, in terms of acuity and haste, task‐orientated work patterns and influence from “the rule of medicine,” all of which can privilege particular types of relating. In this article, we drew on existing conceptualizations of relationships from theory and practice by tapping in to the intellectual resources provided by nurse researchers, the philosophy of Martin Buber and ANT scholars. This involved recounting two examples of dyadic and networked relationships which were re‐interpreted using two complementary theoretical approaches to provide deeper and more comprehensive conceptualizations of these relationships. By re‐presenting key tenets from the work of key scholars on the topic relationships, we hope to hasten socialization of these ideas into nursing into the acute care setting. First, by enabling nurses to reflect on how they might work toward cultivating relationships that are more salutogenic and consistent with the preservation of personhood. Second, by stimulating two distinct but related lines of research enquiry which focus on dyadic and networked relationships with the older person with cognitive impairment in the acute care setting. We also hope to reconcile the schism that has emerged in the literature between preferred approaches to care of the older person with cognitive impairment, that is person‐centred care versus relationship‐centred care by arguing that these are complementary rather than mutually exclusive and can be brought together in one theoretical framework acknowledging personhood as relational in essence. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Resilience and the Narratives of Parents of Adults with Autism Spectrum DisordersNabil Hassan El-GhorouryThe prevalence of autism spectrum disorders (ASDs) is on the rise; the most recent report from the Autism and Developmental Disabilities Monitoring Network (2012) indicated a prevalence of ASDs of one in 88 children. This was a 78% increase from reported prevalence rates in 2002, when the rate was one in 150. Major health (...) organizations have been emphasizing the importance of early identification (Johnson, Myers, & Council on Children with Disabilities, 2007) to increase access to early intervention services, which are most effective when implemented before age three (Rogers & Vismara, 2008).The bulk of autism research has been focused on children, particularly young children. Given the growing identification and prevalence of ASDs, there will be more and more adolescents and adults with ASDs in the near and long term future. This issue of Narrative Inquiries in Bioethics is important because of its focus on an underrepresented area in the literature. The constraints of current health care delivery systems do not allow for providers to spend significant amounts of time with their patients. Furthermore, hearing first person narratives can be valuable by informing health care professionals about the experiences that parents (and by extension, the individual with an ASD) have experienced.As a licensed clinical psychologist with over two decades of experience with children, adolescents, and adults with ASDs in a variety of settings, I have a professional perspective on autism. As the older brother of Omar, a 38–year–old adult male with autistic disorder, I also have a lifetime of personal experiences of autism. As long as I can remember, I have had a brother with autism. I hope this unique perspective as both a behavioral health care provider and a family member of an adult with an ASD allows me to comment on these narratives in a thoughtful manner.Seeing Beyond Autism: Multiple IdentitiesMany parents commented on how their child was more than just autism or Asperger’s; they reflected on the strengths, unique experiences, and perspectives of their child. The narratives are rich in their desire to see the whole being of their children. Anonymous One writes:Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough. [End Page 189]Mark Osteen wrote about his son Cameron as they were making the decision to place their son in a residential placement: “I felt proud. It was like he was being recruited for college. And I am just as proud of him, and love him just as much, as if he were. What I hate is talking only about his ‘disability.’ I hope they see his good qualities. How smart he is. How funny he is. How charming he is. How strong he is.”Understanding the multiple identities of individuals with ASDs is important for parents so that they are not solely focused on the autism diagnosis. The talents and skills of the young adults described are remarkable. Anonymous One’s son David became a computer engineer at 13, reportedly “he was the youngest person in the United States to do so at such a young age.” Lori Centineo’s son Nathaniel is a poet, a rock climber, and skilled at sailing. Virginia Clapp’s son Nathaniel is a “chess genius”, a talented juggler “with the ability to juggle seven balls, which he told me is ‘insanity in a nutshell’,” and an origami expert. David McDonald’s nephew grew from a teenager who spoke only 30 words to speaking thousands of words and ultimately becoming a world traveler. Anonymous Four’s son Sam is “practically an expert” in earth sciences.Seeing beyond the autism is not always easy. Given the serious challenges... (shrink)

We live with the legacy of injustice, political as well as personal. Even if our governments are now democratically elected and governed, our societies are scarred by forms of power and privilege accrued from a time in which people’s race, sex, class and religion were grounds for denying them a role in government, or in the selection of those who governed them. What does that past imply for the treatment of religion in democratic states? The problem is particularly (...) pressing once one accepts that religious freedom is not just a matter of individuals’ freedom of conscience and worship, but of people’s claims to associate with others through institutions whose powers, status and commitment to equality are very different (Laborde, 2015). If this means that churches pose some of the same philosophical and practical problems as families, from a democratic perspective, the fact that churches have no obvious point or justification, beyond being the repository of the claims to conscience of their members, appears to distinguish them from the former. In principle, this should make it easier to think about the claims of government, as compared to those of churches. In practice, however, it may simply bring into sharper focus philosophical and political challenges to equality that contemporary democracies now face. (shrink)

This chapter aims to combine the general framework of social investment with organizational forms and possible organizational changes. This chapter underlines mixed specifics of the contributions of various entities of the public sector, the private sector, the non-governmental sector, the informal sector, and hybrid organizations to the implementation of the creative ageing policy. The chapter also includes recommendations for the management of the creative ageing programs.

Objectives: The COVID-19 pandemic is having a major impact on the lives of everyone, but in particular on the health and well-being of older people. It has also disrupted the way that individuals access services and interact with one another, and physical distancing and “Stay at Home” orders have seen digital interaction become a necessity. While these restrictions have highlighted the importance of technology in everyday life, little is known about how older adults have (...) responded to this change. Methods: Two surveys, one in 2019 and another in 2020 collected data on a combined total of 1923 older adults aged 65 years and older in Canada. These looked at how older adults think about and use technology, with the 2020 survey additionally questioning how COVID-19 has impacted their use and attitudes towards technology. Results: While older adults feel more isolated in 2020, many feel positive about the benefits of technology and have increased technology use during the pandemic to support their health, wellness, and communication needs. Discussion: The results highlight the potential of technology for supporting older adults in various aspects of healthy aging. While these results point to the opportunities afforded by technology, challenges remain, such as how social and economic factors influence technology uptake. (shrink)

The growing gap between demands and resources is putting immense pressure on all government spending in Sweden. The gap is especially apparent in care and services for elderly people in light of the rapid aging of the population. The article considers the decisions and priorities concerning resource allocation in the welfare sector in general and in elderly care in particular. The aim is to describe the political and administrative setting and to provide a conceptual structure that outlines the (...) nature of the problem. Various levels of decision making are identified and discussed in the context of political accountability. Current transitions in elderly care are described with respect to service provision, marketisation, coverage rates, and eligibility standards. Basic principles of distribution are highlighted in order to clarify some central concepts of efficiency and justice, and a number of strategies for actual prioritising are identified. The article concludes with an endorsement of more conscious decisions in resource allocation. Existing knowledge and information concerning the effects of various strategies must be utilised, and the values and assumptions used for setting priorities must be made explicit. (shrink)

Learning disabilities are highly prevalent on college campuses, yet students with learning disabilities graduate at lower rates than those without disabilities. Academic and psychosocial supports are essential for overcoming challenges and for improving postsecondary educational opportunities for students with learning disabilities. A holistic, multi-level model of campus-based supports was established to facilitate culture and practice changes at the institutional level, while concurrently bolstering mentors’ abilities to provide learning disability-knowledgeable support, and simultaneously creating opportunities for (...) students’ personal and interpersonal development. Mixed methods were used to investigate implementation of coordinated personal, interpersonal, and institutional level supports for undergraduate science, technology, engineering, and math (STEM) students with learning disabilities. A one-group pre-test post-test strategy was used to examine undergraduate outcomes. Participants included 52 STEM undergraduates with learning disabilities, 57 STEM graduate student mentors, 34 STEM faculty mentors, and 34 university administrators and personnel as members of a university-wide council. Enrolled for two years, undergraduates were engaged in group meetings involving psychoeducation and reflective discussions, development of self-advocacy projects, and individual mentorship. Undergraduates reported improved self efficacy (p =.001), campus connection (p <.001), professional development (p ≤.002), and self advocacy (p <.001) after two academic years. Graduate student mentors increased their understanding about learning disabilities and used their understanding to support both their mentees and other students they worked with. Council members identified and created opportunities for delivering learning disability-related trainings to faculty, mentors and advisors on campus, and for enhancing coordination of student services related to learning and related disorders. Disability-focused activities became integrated in broader campus activities regarding diversity. This research explicates a role that college campuses can play in fostering the wellbeing and the academic and career development of its students with developmental learning and related disorders. It offers an empirically tested campus-based model that is multilevel, holistic, and strengths-based for supporting positive outcomes of young people with learning disabilities in STEM. Moreover, findings advance the knowledge of supports and skills that are important for self-regulating and navigating complex and multi-faceted disability-related challenges within both the post-secondary educational environment and the young adults’ sociocultural context. (shrink)

Conducting phenomenological research for dissertations can be an involved and challenging process, and writing it up is often the most challenging part. How to Write a Phenomenological Dissertation gives students practical, applied advice on how to structure and develop each chapter of the dissertation specifically for phenomenological research. Phenomenology is about personal experience and personal experience varies from researcher to researcher. However, this variation is a big source of confusion for new researchers in the social, behavioral, or health sciences. (...) This brief text is written in a simple, step-by-step fashion to account for this flexibility and variation while also providing structure necessary for a successful dissertation. Broken up into chapters that follow each chapter of the dissertation, this text logically addresses the various parts of phenomenological research, starting with ensuring phenomenology is the right method for your research, writing the literature review, going through methods and results sections to analysis and discussion. The author, using experience gleaned from supervising phenomenological dissertations for many years, gives time-tested advice on how structure the dissertation to fit into more common frameworks, using checklists and tables throughout. Each chapter includes a list of helpful resources for students to use alongside this book with specific information on methods and research. Unique to this text is a chapter on creating your own phenomenological method which allows students to expand their viewpoints and experiment in future studies after the dissertation. (shrink)

Because of New York City's proximity to water, edifices were built with one step as a barrier to potential flooding. The increase in the disability population made it evident that this step formed a barrier to people who could not negotiate level changes, especially those in wheelchairs and motorized scooters. The Americans with Disabilities Act (ADA) requires that new construction be accessible to people with disabilities and that older buildings be altered when (...) such accessibility is “readily achievable.” The problem is that except for people with disabilities filing legal complaints when the ADA is violated, there is no other enforcement mechanism. Also, New York City's narrow streets allow too little space for compliant ramps. This article describes how disability activists and government representatives created a model for accessibility that allowed for informal agreements and solutions that, although not always strictly compliant with the law, served the actual needs of the disability population. (shrink)

Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived experience, members of (...) the public, and engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like—its ethical goals and approach—according to those being engaged. (shrink)

The paper represents an empirical study of public attitudes towards moral bioenhancement. Moral bioenhancement implies the improvement of moral dispositions, i.e. an increase in the moral value of the actions or character of a moral agent. The views of bioethicists and scientists on this topic are present in the ongoing debate, but not the view of the public in general. In order to bridge the gap between the philosophical debate and the view of the public, we have (...) examined attitudes towards moral bioenhancement. The participants were people from Serbia older than 15, who voluntarily completed an online questionnaire. The questionnaire consisted of a brief introduction to moral bioenhancement, seven general questions, 25 statements about participants’ attitudes towards moral bioenhancement, and five examples of moral dilemmas. The questionnaire also included questions which were used to reveal their preference of either deontology, or utilitarianism. Participants were asked to what degree they agree or disagree with the statements. The results showed that the means used to achieve moral enhancement, the level of education, and preference for deontology or utilitarianism do have an impact on public attitudes. Using exploratory factor analysis, we isolated four factors that appear to drive the respondents' attitudes toward moral bioenhancement, we named: general—closeness, fear of change, security, and voluntariness. Each factor in relationship to other variables offers new insights that can inform policies and give us a deeper understanding of the public attitudes. We argue that looking into different facets of attitudes towards moral bioenhancement improves the debate, and expands it. (shrink)