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)

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 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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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

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)

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)

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)

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 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)

In March of this year the British Medical Association , the Resuscitation Council and the Royal College of Nursing published guidelines outlining the legal and ethical standards for decision making in relation to cardiopulmonary resuscitation .1 The guidance follows a year of increasing public awareness and concern about the issue and builds upon joint guidance issued by these institutions in June 1999.In April 2000 Age Concern issued a press release stating that “some doctors are ignoring national guidelines on (...) the resuscitation of older people” and indicating that they had information on cases that had come to light in their campaign against age discrimination. Age Concern went on to say that older people have found “not for resuscitation” recorded in their medical notes without their agreement or knowledge.During the same month Professor Shah Ebrahim wrote a leader in the British Medical Journal stating that doctors regularly issue “do not resuscitate” orders for patients without their knowledge.2 He claimed that black people, alcohol mis-users, non-English speakers and those with HIV are more likely to get a “do not resuscitate” order, suggesting that prejudice is influencing medical decisions.This combination of events was followed by intense press and media interest in the way in which decisions were being made about cardiopulmonary resuscitation. Such was the level of concern that a health service circular was issued to all National Health Service trust chief executives in September 2000 asking that appropriate resuscitation policies be in place which respect patients' rights, are understood by …. (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)

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)

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)

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)

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)

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 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)

Assisted dying is a divisive and controversial topic and it is therefore desirable that a broad range of interests inform any proposed policy changes. The purpose of this study is to collect and synthesize the views of an important stakeholder group—namely people with disabilities —as expressed by disability rights organisations in Great Britain. Parliamentary consultations were reviewed, together with an examination of the contemporary positions of a wide range of DROs. Our analysis revealed that the vast (...) majority do not have a clear public stance; those that do exhibit a significant diversity of opinion. DROs opposing legislation on assisted dying have argued that it would be premature, misguided, inequitable and culturally undesirable. Some specify conditions that would have to be satisfied before they could support legalisation, such as radical improvements in health and social care services and the elimination of discrimination against PwD. DROs supporting assisted dying maintain that a change in the law would promote autonomy, end intense suffering, can be delivered safely and is supported by the DRO’s membership. The discussion considers the reasons why several DROs adopt a neutral stance and the argument is made that, whatever their overarching stance on the issue, DROs need to be involved in the policy debate so that the crucial perspectives of PwD are heard and addressed. This is an important message for countries around the world that permit, or are considering legalising, assisted dying. (shrink)

The publication ‘Governance arrangements for NHS Research Ethics Committees’ is clear in its recommendations about the composition of National Health Service research ethics committees in the United Kingdom. It highlights the need for a sufficiently broad range of experience and expertise, balanced age and gender distribution and every effort to be made to recruit members from black and ethnic minority backgrounds, as well as people with disabilities. It was considered that this composition would make it possible (...) for the scientific, clinical and methodological aspects of a research proposal to be reconciled with the welfare of research participants, and with broader ethical implications. Black and other ethnic minorities constitute 7.9 per cent of the UK population. Ideally, in any research ethics committee with a maximum of 18 members, at least one would be a member of the black or other ethnic minority groups. However, this does not appear to be the case; some committees having more than one, while most do not have any. This paper looks at the present position and suggests ways of improving recruitment and retention of members of these groups. (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)

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)

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)

Background Equal access to healthcare is a core principle in Norway’s public healthcare system. The COVID-19 pandemic challenged healthcare systems in the early phase – in particular, related to testing and hospital capacity. There is little knowledge on how older people experienced being infected with an unfamiliar and severe disease, and how they experienced the need for healthcare early in the pandemic Aim To explore the experiences of older people infected by COVID-19 and their (...) need for testing and hospitalisation. Research design An explorative and descriptive approach, with qualitative interviews conducted in October 2020. Participants and research context Seventeen participants above 60 years of age hospitalised due to COVID-19 during spring 2020 were recruited 6 months after discharge. Ethical considerations Ethical approval was granted by the Regional Committee for Medical and Health Research Ethics in South-Eastern Norway (155425). Findings The main finding was that the informants experienced vulnerability and arbitrariness. This finding was supported by three sub-themes: experiences with a severe and unfamiliar disease, the strict criteria and the importance of someone advocating needs. Discussion Participants described varying access to healthcare. Those who did not meet the national criteria to be tested or hospitalised struggled against the system. Findings reveal arbitrary access to healthcare, in contrast to Norway’s ethical principle of fair and just access to health services. Moreover, to access and receive necessary healthcare, informants were dependent on their next-of-kin’s advocacy. Conclusion Even when dealing with an unfamiliar disease, health professionals’ assessments of symptoms must be performed with an ethical obligation to applicate competent appraisal and the exercise of discernment; this is in line with care ethics and ethical standards for nurses. These perspectives are a significant part of caring and the intension of doing good. (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)

Developments in the provision of care and support services for disabled and older people across developed welfare states have led to the expansion of personalisation (sometimes called cash-for-care, direct payments, care payments, etc.) schemes, whereby cash is paid in substitute for care services and support. Although these schemes vary considerably in their scope and operation (sometimes paying carers directly, sometimes enabling disabled and older people to act as direct employers, sometimes mixing paid and unpaid (...) care), they share the characteristics of commodifying care and support services and will have a potentially profound impact on the relationship between individuals, families, communities and the welfare state. Although the schemes have been evaluated within their own national contexts, little work has been done so far to explore the theoretical implications of their development and extension, particularly from an ethics of care perspective. This paper intends to fill that theoretical gap by drawing on comparative evidence from several schemes across different national contexts to develop an analysis which draws on feminist theory and an ethics of care approach to examine (a) the gendered policy outcomes and impact of such schemes; (b) a feminist analysis of the governance implications of personalisation; (c) the implications for the gendered division of work, particularly between paid and unpaid care work and between different groups of paid and unpaid carers; (d) an ethics of care analysis of the impact of personalisation over the lifecourse of disabled and older people, and carers; and (e) a discussion of the relationship between commodification, empowerment, citizenship and choice drawing on the work of care ethicists. It will draw conclusions about the outcomes of a range of types of personalisation schemes and thus have implications for theory, policy and practice. (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 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)

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 care for older and disabled people has been described as a core area of the Nordic model. The Nordic countries’ welfare model has also been described as women friendly, as women are not forced to make harder choices than men between work and family. The Swedish eldercare system has, during the last several decades, undergone significant changes. Previously, eldercare could be described as universal, meaning a publicly provided, comprehensive, high-quality service available to all citizens according to need (...) and not based on the ability to pay. In later years transformation of eldercare has been influenced by neoliberal politics, which emphasize economic efficiency and cost reduction through competition. Eldercare has become a more diverse multidimensional system, and a private market for home-based eldercare has been created. The numbers of eldercare providers have increased considerably, and new ways of organizing eldercare have been established. In January 2009, the Act on System of Choice in the Public Sector was introduced. The Act was supposed to provide an opportunity for interested municipalities and county councils to expose their publicly provided services to market competition, and to enable users to choose their providers. This article aims to illustrate how neoliberal reasoning dominated the policy process leading to adoption of the Act on System of Choice in the Public Sector. With the use of a discursive policy analysis the authors specifically explore how neoliberal logic dominated, and also how choice and equality were understood and interpreted in the policy process. They conclude that the neoliberal turn in eldercare claiming to centre on the individual choice of persons in need of care runs the risk of creating unequal care that decentres the eldercare worker and creates precarious work situations. (shrink)

Climate change, nutrition, poverty and medical drugs are widely discussed and pressing issues in science, policy and society. Despite these issues being of great importance for the quality of our lives it remains unclear how well people understand them. Specifically, do particular demographic and socioeconomic factors explain variation in public understanding of these four concepts? To what extent are people’s changes in understanding associated with changes in their behaviour? Do people judge scientific practices relying on (...) the more descriptive concepts of climate change and effective medical drugs to be more objective (less controversial) than practices relying on the more value-laden concepts of poverty and healthy nutrition? To address these questions, an experimental survey and regression analyses are conducted using data collected from about one thousand participants across different continents. The study finds that public understanding of science is generally low. A smaller proportion of people were able to correctly identify the common explanation accepted internationally among the scientific community for climate change and effectiveness of medical drugs (42% and 43% of participants in the study, respectively) than for poverty and healthy nutrition (61% and 65% of participants, respectively). Older age and political non-conservativeness were the strongest predictors of correctly understanding these four concepts. Greater levels of education and political non-conservativeness were in turn the strongest predictors of people’s reported changes in their behaviour based on their improved understanding of these concepts. Because climate change is among the least understood scientific concepts but is arguably the greatest challenge of our time, better efforts are needed to improve how media, awareness campaigns and education systems mediate information on the topic in order to tackle the large knowledge deficits that constrain behavioural change. (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)

Purpose– The purpose of this paper is to create a conceptual framework, based on a structured literature review, to analyze the digital disability divide and help find solutions for it. A digital disability divide exists between people with impairments and those without impairments. Multiple studies have shown that people without impairments are less likely to own a computer or have an Internet connection than are people with impairments. However, the digital disability divide is seen in (...) relation not only to access but also to accessibility and use. For people with impairments, new technological innovations offer solutions for everyday challenges, such as finding information, communicating with others and using electronic services.Design/methodology/approach– For this study, 4,778 conference and journal publications were systematically analyzed.Findings– A number of key findings emerged. This field is relatively new, and the literature is highly focused on the technological and social aspects of the digital disability divide, with technology and societal attributes being the core sub-attributes for a comprehensive model. The previous literature did not significantly study the consequences of the financial situation of individuals; rather, the predominant focus was on the have-nots and countries with low income potentials. Furthermore, motivation reveals a compelling case within the digital disability divide subset.Originality/value– The review provides a consolidated view of past research on the general topic of the digital disability divide and the attributes that affect it. (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)

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)

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)