Background In April 2019, our hospital transitioned to an electronic patient record system and patient portal. MyGOSH enables young people aged 12 years or older and their parents to access results, documentation, appointments, and to communicate with their care team. Aims A focus group was conducted to explore the ethical and legal considerations of young people and their parents using a patient portal from the perspective of hospital Ethics Committee members. Participants and research context Members of the (...) hospital Paediatric Bioethics Centre were recruited. Written informed consent was provided by all participants. Research design The focus group discussion was recorded, transcribed verbatim and analysed using thematic analysis. Ethical considerations Health Research Authority Research Ethics Committee Approval was granted by London Southeast REC. Results Four themes, and sub-themes, were identified: granting access – complexities of assessing competence/capacity, exclusion from MyGOSH due to non-disclosure of diagnosis, and truth-telling; inequalities resulting in inequities – complexities of inequity in access; responding to change – providing support and managing expectations; engagement, empowerment and understanding – data safety, empowering young people to take ownership of their health data, a one-size fits all system may not meet the needs of all families, and early engagement with young people/parents. Discussion Giving families portal access can increase engagement, empowering them to be more involved in care, yet poses challenges for all. Complexities exist in the assessment for portal access, and supporting and managing user expectations whilst providing an equitable service. Conclusions Ongoing support is required for all stakeholders following patient portal implementation to navigate the ethical and legal complexities, and to promote equity and portal utility for patient benefit. (shrink)

Background: In China, the conventional family-based ageing care model is under pressure from social transitions, raising the question of whether and to what extent families are still capable of dealing with the care of the aged. Objective: This article examines the vulnerability and inadequacy of families to bear responsibility for the care of the aged against a backdrop of socioeconomic transformation and diminishing institutional support in rural China. Research design: This article adopts an empirical ethical approach that integrates empirical investigation (...) with ethical inquiry. Participants and research context: The empirical component of this article focuses on the lived experiences of caring for a wife and mother with dementia in one rural Chinese family, collected from a 6-month fieldwork study conducted at one primary hospital. Ethical considerations: Approval was obtained from the university ethics committee. Findings: The empirical study highlights a conflicted family process of managing and negotiating care that indicates the inadequacies and limited ability of families to deal with aged care tasks. In addition, inadequate structures and institutional deficiencies exacerbate the vulnerability of rural families and their inability to offer adequate care. Conclusion: Acknowledging the vulnerability of families as ageing care providers, this article calls for a socially supported family care model for rural older people in China and also proposes policy recommendations. (shrink)

This study analyzes Portuguese seniors’ Internet activity and determine their reasons, benefits, and motivations for web use as well as the obstacles faced by non-users. Results were derived from a questionnaire completed by 189 seniors enrolled in universities for seniors. 68.1% defined themselves as Internet users. The seniors asked principally go online to check e-mail and gather information. They state that the Internet is useful, helps them to stay up-to-date, and to preserve relationships. Non-user status is not attributed to old (...) age or health reasons. According to the technology acceptance model, ease of use and perception of utility were related to both Internet use and its intensity of use. Family influence also played a key role. Gender differences were not found in Internet use, intensity of use, or in use motivations. (shrink)

The mass media play a crucial role in modern societies. Media allows reaching with information’s about current events to the broad masses of recipients, they interpret it and construct their meanings, they create a community of values, organize entertainment in leisure time and mediate in mobilizing social movements. Mass communication is also related to conduct of public debate and developing public opinion awareness about social problems. The aim of this article is to bring closer look on the results of empirical (...) analysis of selected messages perceived by older people in the press, radio and television that are related to their image, problems and interests. Work outlines the expectations of senior citizens towards activities of mass media on local and national level. ** Środki komunikowania masowego odgrywają kluczową rolę w społeczeństwach nowoczesnych. Media umożliwiają docieranie informacji o bieżących wydarzeniach do szerokich rzesz odbiorców, interpretują je i konstruują ich znaczenia, wytwarzają wspólnotę wartości, organizują rozrywkę w czasie wolnym oraz pośredniczą w mobilizowaniu ruchów społecznych. Komunikacja masowa jest też związana z prowadzeniem debaty publicznej i uwrażliwianiem opinii publicznej na problemy społeczne. Celem artykułu jest przybliżenie wybranych wyników analiz empirycznych przekazów dostrzeganych przez ludzi starych w prasie, radiu i telewizji związanych z ich wizerunkiem, problemami i interesami. Praca zarysowuje również oczekiwania seniorów wobec działalności mass mediów na poziomie lokalnym i krajowym. (shrink)

Autonomy has been recognised as a key principle in healthcare, but we still need to develop a consistent understanding of older people’s perceived autonomy in residential care. This study aimed to identify, describe and synthesise previous studies on the perceived autonomy of older people in residential care. Ethical approval was not required, as this was a review of published literature. We carried out an integrative review to synthesise previous knowledge published in peer-review journals in English up (...) to September 2019. Electronic and manual searches were conducted using the CINAHL, Philosopher’s Index, PubMed, SocINDEX, Scopus and Web of Science databases. The data were analysed using the constant comparison method. The review identified 46 studies. Perceived autonomy referred to the opportunities that older people had to make their own choices about their daily life in residential care, and achieving autonomy promoted both health and quality of life. Autonomy was linked to older people’s individual capacities, including their level of independence, physical and mental competence, personal characteristics, and whether relatives shared and supported their perceived autonomy. Professionals could facilitate or hinder older peoples’ autonomy in a number of ways, including providing opportunities for autonomy, how daily care needs and activities were managed, and controlling older people’s choices. Professionals’ characteristics, such as education and attitudes, and the older people’s living environments were also associated with their perceived autonomy and included organisational characteristics and physical and social care facilitators. Older people’s perceived autonomy promoted health and quality of life in residential care. However, their autonomy was associated with a number of protective and restrictive individual and environmental factors, which influenced whether autonomy was achieved. (shrink)

Old age is often described from the perspective of losses, deficits, and risks. This chapter rejects such a way of thinking. It focuses on the potentials of older adults. The main aim of this chapter is to describe different resources that can be interpreted as positive contributions of older people and the ageing population in society and the economy. Notions of the human capital, the social capital, the cultural capital, and the symbolic capital of older (...) class='Hi'>people will be briefly discussed and compared. (shrink)

The elderly are often considered a vulnerable group in public and academic bioethical debates and regulations. In this paper, we examine and challenge this assumption and its ethical implications. We begin by systematically delineating the different concepts of vulnerability commonly used in bioethics, before then examining whether these concepts can be applied to old age. We argue that old age should not, in and of itself, be used as a marker of vulnerability, since ageing is a process that can develop (...) in a variety of different ways and is not always associated with particular experiences of vulnerability. We, therefore, turn to more fundamental phenomenological considerations in order to reconstruct from a first person perspective the intricate interconnections between the experiences of ageing and vulnerability. According to this account, ageing and old age are phenomena in which the basic anthropological vulnerability of human beings can manifest itself in an increased likelihood of harm and exploitation. Thus, we plead for a combined model of vulnerability that helps to avoid problems related to the current concepts of vulnerability. We conclude first that old age as such is not a sufficient criterion for being categorized as vulnerable in applied ethics, and second that reflections on ageing can help to develop a better understanding of the central role of vulnerability in human existence and in applied ethics. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:IntroductionParenting Children with Autism Spectrum Disorders During the Transition to AdulthoodKelly Dineen and Margaret Bultas, Symposium EditorsThis issue of Narrative Inquiry in Bioethics is devoted to the personal stories of parents or guardians whose children with ASDs are transitioning or have transitioned to adulthood. The same parents who navigated the educational and health systems with little support twenty years ago once again find themselves as pioneers in somewhat (...) unchartered territory. Transition to adulthood, again, presents new terrain without well–defined parameters or reliable expectations for individuals with ASD and the parents who support them. At current, very little has been studied or written about the unique perspectives of parents during transition. What does exist suggests that parents of individuals with autism perceive their experiences as novel, even as compared with parents of children with other kinds of disabilities (Woodgate, Ateach, & Secco, 2008).One in 88 children is estimated to have an autism spectrum disorder (ASD) in 2012, a 78% increase since 2007 (Centers for Disease Control and Prevention, 2012). Although a variety of factors are certainly involved, the rate of diagnosis of individuals with ASDs has increased dramatically over the last twenty years and by all accounts the level and quality of support in health and social systems have lagged behind.While support and interventions have progressed significantly over time, attention on older populations has played a secondary role to early interventions. The proliferation of young people with ASD has outpaced supportive efforts at all levels. ASDs are usually diagnosed in childhood and funding for and access to research and interventions for children have resulted from, in no small part, the zealous efforts of parents. As this growing population of individuals with ASDs transitions to adulthood, finding appropriate supports and interventions have proven more elusive and more complicated. The hallmark symptoms of ASDs include social skill deficits and communication and behavioral difficulties—all traits that especially strain typical teenage and young adult relationships. Recent research backs up these difficulties and indicates that individuals with ASDs fare relatively poorly in traditional measures of independence such as employment, education and social relationships. Parents like the authors in this symposium continue to work to help their teenage and adult children navigate the demands, challenges and rewards of adulthood and independence with all its uncertainties and surprises.The editors of this issue of Narrative Inquiry in Bioethics solicited the personal stories of the parents who have navigated this transition. The call for stories was distributed to autism awareness groups, autism list–serves, bloggers, and social media outlets. Personal appeals to thought leaders and advocacy groups to distribute the call for stories also produced a number of responses. The [End Page 147] people and organizations that passed along our request and responded are too numerous to list here but our gratitude is sincere: their help made this issue possible.We hope the stories will give readers a sense of what parents find rewarding as well as especially challenging during this time and what actions and supports make a difference for the better. Stories about any aspect of the transition were welcome, ranging from navigating the health system to issues surrounding romantic relationships. We welcomed parents’ thoughts on any topic, including gender, level of function, provider behavior, stigma, friendship, services (existing or needed), decision making, independent living, co–morbidities, expectations, work, school or relationships.These topics and more emerged. Stories primarily came from mothers; however one father and one uncle also contributed. Consistent with diagnostic trends, most tell stories of parenting young men. The 12 stories that were selected for this edition represent just a fraction of the diverse set of issues, needs and commonalities of this growing population of adults. We received more stories than we could put in print. Twelve were selected to represent a range of experiences. Many other stories were so powerful that they will appear on–line in the Project MUSE edition of the journal.Commentators also represent a diverse group of professionals whose work includes direct care and support of individuals with ASD and their families, education, research, scholarship and advocacy. Some of our commentators also have a child or a loved one with ASD.Patricia Bashe... (shrink)

An online survey of 654 Australians found that the NP seniors is associated with positive personal characteristics of health and well-being such as ‘like to travel’, ‘lead an involved and active life’, ‘are vibrant and full of purpose’. Older people is also associated with positive characteristics, but somewhat less so than seniors and more socially oriented. Older people are seen to ‘benefit the workforce through their experience’, ‘have wisdom and can always be turned to for advice’, (...) ‘play an important role in their extended family’s life’. By contrast, the characteristics of those typically referred to by the elderly are negative in that the referents are incompetent or impose a burden on society, cf. ‘are frail and fall more often’, ‘are often victims of mental and physical abuse’, ‘are unable to look after themselves and depend on others for help’. The referents of old people and oldies have no particular set of characteristics assigned to them; perhaps that is why they only figure in the one characteristic ‘are tight-fisted with money’ that itself is not strongly associated with any one of the five NPs. (shrink)

This paper offers an ethical framework for the development of robots as home companions that are intended to address the isolation and reduced physical functioning of frail older people with capacity, especially those living alone in a noninstitutional setting. Our ethical framework gives autonomy priority in a list of purposes served by assistive technology in general, and carebots in particular. It first introduces the notion of “presence” and draws a distinction between humanoid multi-function robots and non-humanoid robots to (...) suggest that the former provide a more sophisticated presence than the latter. It then looks at the difference between lower-tech assistive technological support for older people and its benefits, and contrasts these with what robots can offer. This provides some context for the ethical assessment of robotic assistive technology. We then consider what might need to be added to presence to produce care from a companion robot that deals with older people’s reduced functioning and isolation. Finally, we outline and explain our ethical framework. We discuss how it combines sometimes conflicting values that the design of a carebot might incorporate, if informed by an analysis of the different roles that can be served by a companion robot. (shrink)

Introduction With an ageing population, end-of-life care is increasing in importance. The present work investigated characteristics and time trends of older peoples' attitudes towards euthanasia and an end-of-life pill. Methods Three samples aged 64 years or older from the Longitudinal Ageing Study Amsterdam (N=1284 (2001), N=1303 (2005) and N=1245 (2008)) were studied. Respondents were asked whether they could imagine requesting their physician to end their life (euthanasia), or imagine asking for a pill to end their life if they (...) became tired of living in the absence of a severe disease (end-of-life pill). Using logistic multivariable techniques, changes of attitudes over time and their association with demographic and health characteristics were assessed. Results The proportion of respondents with a positive attitude somewhat increased over time, but significantly only among the 64–74 age group. For euthanasia, these percentages were 58% (2001), 64% (2005) and 70% (2008) (OR of most recent versus earliest period (95% CI): 1.30 (1.17 to 1.44)). For an end-of-life pill, these percentages were 31% (2001), 33% (2005) and 45% (2008) (OR (95% CI): 1.37 (1.23 to 1.52)). For the end-of-life pill, interaction between the most recent time period and age group was significant. Conclusions An increasing proportion of older people reported that they could imagine desiring euthanasia or an end-of-life pill. This may imply an increased interest in deciding about your own life and stresses the importance to take older peoples' wishes seriously. (shrink)

Since its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and (...) from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge (embodied, experiential, visual, and cognitive-scientific). In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves. (shrink)

Background: Older people in institutional care should be allowed to live a meaningful life in a home-like environment consistent with their own free will. Research on actualisation of older people’s own free will in nursing home context is scarce. Objectives: The purpose of this study was to describe older people’s experiences of free will, its actualisation, promoters and barriers in nursing homes to improve the ethical quality of care. Research design: Fifteen cognitively intact (...) class='Hi'>older people over 65 years in four nursing homes in Southern Finland were interviewed. Giorgi’s phenomenological method expanded by Perttula was used to analyse the data. Ethical considerations: Chief administrators of each nursing home gave permission to conduct the study. Informants’ written informed consent was gained. Findings: Older people described free will as action consistent with their own mind, opportunity to determine own personal matters and holding on to their rights. Own free will was actualised in having control of bedtime, dressing, privacy and social life with relatives. Own free will was not actualised in receiving help when needed, having an impact on meals, hygiene, free movement, meaningful action and social life. Promoters included older people’s attitudes, behaviour, health, physical functioning as well as nurses’ ethical conduct. Barriers were nurses’ unethical attitudes, institution rules, distracting behaviour of other residents, older people’s attitudes, physical frailty and dependency. Discussion: Promoting factors of the actualisation of own free will need to be encouraged. Barriers can be influenced by educating nursing staff in client-orientated approach and influencing attitudes of both nurses and older people. Conclusion: Results may benefit ethical education and promote the ethical quality of older people’s care practice and management. (shrink)

A growing number of consumer technology companies are aiming to convince older people that humanoid robots make helpful tools to support aging-in-place. As hybrid devices, socially assistive robots (SARs) are situated between health monitoring tools, familiar digital assistants, security aids, and more advanced AI-powered devices. Consequently, they implicate older people’s privacy in complex ways. Such devices are marketed to perform functions common to smart speakers (e.g., Amazon Echo) and smart home platforms (e.g., Google Home), while other (...) functions are more specific to older people, including health and safety monitoring and serving as companions to mitigate loneliness. Privacy is a key value central to debates about the ethics of using SARs in aged care, yet there has been very little interchange between these debates and the robust theoretical discussion in the legal literature about the future of privacy and AI governance. Drawing on two qualitative studies of older people’s views on consumer SARs, the paper contributes novel findings about older people’s thinking on privacy and data governance at the intersection of their experiences with present day digital technologies and projections for future AI systems, and places their views in dialogue with debates about the future of privacy protection and AI governance. (shrink)

PurposeThe purpose of this paper is to contribute to the literature on age and the digital divide by examining the uses of and attitudes toward information and communication technologies by 26 politically senior citizens.Design/methodology/approachThe approach taken involved in‐depth face‐to‐face interviews.FindingsThe majority of the respondents are informed and balanced cyber‐enthusiasts who have embraced the opportunities afforded by ICTs to enhance their lives in general, including their political activities.Originality/valueThese findings destabilize the dominant image of older people and their attitudes to (...) and experiences of ICTs that appears in most of the literature on age and the digital divide. Those aged 65 and over represent the last cohort, in Western societies at least, for whom age as such is likely to be a decisive factor in their relationship to ICTs. It is therefore vital to get some insight into their views. (shrink)

At the beginning of the pandemic, many music ensembles had to stop their activities due to the confinement. While some found creative ways to start making music again with the help of technologies, the transition from “real” rehearsals to “online” rehearsals was challenging, especially among older amateur musicians. The aim of this case study was to examine the effects of this transition on three community band conductors and three older amateur musicians. Specific objectives were to explore (...) intergenerational relationships to support online group music-making; digital literacy and access in later life; and online music-making in a COVID-19 context. Semi-structured interviews were conducted and theoretical thematic analysis was undertaken. Results were analyzed from the conductors’ and older musicians’ perspectives, and common trends were combined to facilitate interpretation. The first theme showed that being part of an intergenerational ensemble contributed positively to the learning experience online. The second theme demonstrated that because both conductors and musicians were new to the online rehearsals, it contributed to attenuate the age-related digital divide that may have been observed in other studies. Regarding access in later-life, older musicians reported benefits associated with rehearsing online, specifically in terms of distance/commute, time, energy, and cost. However, for those who did not already have internet and electronic devices, the cost of acquiring all the necessary equipment to make music online could have been too high. Finally, the third theme revealed that musicians appreciated the opportunity to make music online and indicated that it was definitely better than having nothing, especially for its social aspects. In conclusion, while participants noted several challenges associated with online music-making, they were also appreciative of the opportunity to continue making music at a time when in-person rehearsals were not possible. Pedagogical implications are discussed, specifically the importance of the support network, of meeting people where they are, of learning to adapt, and of collaborative teaching. (shrink)

Reasoning requires making inferences based on information gleaned from a set of relations. The relational complexity of a problem increases with the number of relations that must be considered simultaneously to make a correct inference. Previous work (Viskontas, Morrison, Holyoak, Hummel, & Knowlton, 2004) has shown that older adults have difficulty integrating multiple relations during analogical reasoning, especially when required to inhibit irrelevant information. We report two experiments that examined the ability to integrate multiple relations in younger, middle-aged, and (...) older adults performing two other reasoning tasks. These tasks systematically varied relational complexity, and required either inductive reasoning (a version of the Raven's Matrices Task) or transitive inference. Our results show that as people age they have increasing difficulty in solving problems that require them to integrate multiple relations. This difficulty may stem from a decrease in working memory capacity. (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)

The discharge of older people from hospital at night is a topical and emotive issue that has recently gained media attention in New Zealand and the United Kingdom, including calls to prevent it occurring. With growing pressures on hospital capacity and ageing populations, normative aspects of hospital discharge are increasingly relevant. This paper therefore addresses the question: Should older people (say, over eighty years old) ever be discharged home from hospital during the night? Or given safety (...) concerns, should regulation against the night-time discharge of older people be put in place? Employing a principlist lens to bioethics, this paper considers key principles or values involved, including discharge safety concerns, personal preference and consent, the risk of remaining in hospital, and broader considerations around discharge policy. These points act as a possible framework for further research and discussion of normative aspects of hospital discharge. Overall, this paper argues that while discharge safety concerns must be properly acknowledged and addressed, it can still sometimes be appropriate for an older person to leave hospital at night. The option of night-time discharge should therefore remain open to people of all ages. (shrink)

In New Zealand an advance directive can be either an oral statement or a written document. Such directives give individuals the opportunity to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. All consumers of health care have the right to make an advance directive in accordance with the common law. When we consider New Zealand's rapidly ageing population, the fact that more people now live with and (...) die of chronic rather than acute conditions, the importance given to respecting autonomous decision-making, increasing numbers of individuals who require long-term residential care, and financial pressures in the allocation of medical resources, there would seem to be a number of compelling reasons to encourage individuals to write or verbalise an advance directive. Indeed the promotion of advance directives is encouraged. However, caution should be exercised in promoting advance directives to older people, especially in light of several factors: ageist attitudes and stereotypes towards them, challenges in the primary healthcare setting, and the way in which advance directives are currently focused and formulated. This paper considers some of the specific challenges that need to be addressed if the promotion of advance directives are to improve outcomes of patient treatment and care near the end of life. (shrink)

The increase in drop-out rates, especially among older people, in longitudinal studies is a matter for concern if the results are to be valid. The research reported here contains a number of pieces of evidence that might help address the problem. These include a literature review, a survey of some longitudinal studies, secondary (quantitative and qualitative) analysis of the data from a longitudinal study of civil servants (the Whitehall II study), and new data from focus groups and telephone (...) interviews with participants from this current study. The findings relate to reasons why older people continue to take part in such studies, why they drop out and what might encourage them to continue participating. The main reasons for drop out relate to being older, having cognitive impairment and poor functioning, living alone, being a woman and being less educated. There were also a range of practical reasons including the study being too time-consuming and problems with transport. (shrink)

More than thirty-five years ago, a longitudinal study was established to research the health and well-being of older people living in an English city. Self and Meaning in the Lives of Older People provides a unique set of portraits of forty members of this group who were interviewed in depth from their later seventies onwards. Focusing on sense of self-esteem and, especially, of continued meaning in life following the loss of a spouse and onset of frailty, (...) this book sensitively illustrates these persons' efforts to maintain independence, to continue to have a sense of belonging and to contribute to the lives of others. It examines both the psychological and the social resources needed to flourish in later life and draws attention to this generation's ability to benefit from strong family support and from belonging to a faith community. In conclusion, it questions whether future generations will be as resilient. (shrink)

The proportion of older people in the total population is increasing in most countries because of advances in medical technology and resulting longer life expectancy. The role that older people play in our communities does not reflect this. Sometimes they are reduced to mere statistics and stereotypes in economic and political discussions on the financial burdens of care for older people. I argue that we need to rebuild inclusive communities in which older (...) class='Hi'>people are respected as valuable members. I suggest that this can be done by studying the characteristics of past communities and by learning from the work of environmental ethicists who advocate the preservation of our heritage. Nurses share with them a holistic perspective on complex issues such as ageing. They are therefore in a position to empower older people to play a role in our communities as unique individuals with integrity and wisdom. (shrink)

ABSTRACTSince its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and (...) from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge . In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves. (shrink)

Psychological well-being manifests itself in all aspects of human activity and is essential to understanding whether young people experience life satisfaction and whether, as they mature, well-being can be associated with different levels of personal autonomy. This quantitative study was developed within the framework of international research on young people’s autonomy in the transition to adulthood. Its main objectives were to analyze the relationship between psychological well-being and autonomy and examine potential variations between the two variables according (...) to age. To this end, Ryff’s Psychological Well-Being Scale and the Transition to Adulthood Autonomy Scale designed by Bernal et al., were used with a sample of 1,148 young people aged 16–21 from Madrid, Spain, and Bogotá, Colombia. The results show that almost all the dimensions on the Psychological Well-Being Scale correlate significantly and positively with the dimensions on the EDATVA scale. Specifically, moderate correlations were obtained between self-organization on the EDATVA scale and purpose in life and environmental mastery on the Psychological Well-Being Scale. In turn, autonomy on Ryff’s scale obtained the highest correlation with understanding context on the EDATVA scale. It was also found that the older 18–21 age group obtained higher scores than the younger 16–17 age group in all dimensions on both the EDATVA and the Psychological Well-Being Scale. Earlier studies endorse the results found in this research, especially the differences in the scores for both scales according to age groups. This opens avenues for future research to analyze the relationship between psychological well-being and autonomy as independent variables in other sectors of the population. (shrink)

Purpose This paper aims to explore how older people in developed and developing countries are affected by the grey digital divide. It argues country type and culture influence older people’s willingness to access and learn internet skills. Using the knowledge from researchers informs policy, funding and delivery of appropriate skilling to minimize this divide. Design/methodology/approach A systematic literature search using specific keywords to locate digital divide research, specifically pertaining to older people across country types. (...) Findings Despite increased internet access and affordability, older people still face challenges in learning internet skills. Country type, economic challenges and cultural beliefs need to be considered in minimizing the grey divide. Governments recognize the importance of funding such teaching but evidence-based research must continue to inform policy to maximize funding and solve the many physical age and cultural issues affecting older people’s access to internet skills learning. Originality/value This paper argues that research in developing countries into minimizing the grey digital divide is a crucial undertaking. As the internet continues growing in developing countries, finding solutions that consider cultural and age differences issues is crucial to the success of having internet literate societies that have growing populations of older people seeking to use it. (shrink)

The ageing populations of the Western world present a wide range of economic, social, and cultural implications, and given the challenges posed by deteriorating maintenance ratios, the scenario is somewhat worrying. In this paper, I investigate whether Martha C. Nussbaum's capabilities approach could secure dignity for older people in long‐term care, despite the per capita decreases in resources. My key research question asks, ‘What implications does Nussbaum's list of central human capabilities have for practical social care?’ My methodology (...) combines Nussbaum's list with ethnographic data gathered from a Finnish sheltered home for older people. On the basis of this study, it seems that the capabilities approach is a plausible framework for the ethics of care because it highlights differences in the ability to function and thus differences in opportunities to pursue a good life. The ideas presented in this article could assist social policy planners and executives in creating policies and practices that help old people to maintain their dignity until the end of their days. (shrink)

Later life is often seen as a time of losses. Through the death of loved ones and the dwindling of bodily capacities, older people are increasingly confronted with their own mortality. As losses accrue across different domains, they form a unique existential vantage point. We aim to shed light on this understudied dimension of later life by analysing older people’s everyday practices of sense-making. Drawing on the findings of a qualitative interview study (_n_=16, aged 65-93), we (...) identify three distinct practices by which older people make sense of death and bereavement: timing, communing, and missing. We conceptualise these practices as “farewell ceremonies,” a term we borrow from Simone de Beauvoir. The “farewell ceremony” describes a period of incremental goodbyes, which characterised the last ten years of Jean-Paul Sartre as well as the death process of Beauvoir’s mother Françoise. Beauvoir captures these farewell ceremonies in her memoirs _Adieux: A Farewell to Sartre_ and _A Very Easy Death_, which frame our philosophical reflection on practices of timing, communing, and missing. Bringing together Beauvoir’s literary and philosophical work with our empirical findings, we propose an integrated view on death and bereavement in later life that centres the intertwining perspectives of self and other. (shrink)

The early coronavirus disease 2019 (COVID‐19) outbreak inflicted vulnerability on individuals and societies on a completely different scale than we have seen previously. The pandemic developed rapidly from 1 day to the next, and both society and individuals were put to the test. Older people's experiences of the early outbreak were no exception. Using an abductive analytical approach, the study explores the individual experiences of vulnerability as described by older people hospitalised with COVID–19 in the early (...) outbreak. In these older people, we found that the societal context and the individual experiences of vulnerability were inextricable linked. The study demonstrates that despite significant individual stress, informants displayed an interesting ability to also view their situation to reorient their perspective. The experience of vulnerability is both conditional and individual, which imposes a degree of unpredictability that neither they nor others were able to negotiate. The article discusses the phenomenon of unpredictability in light of a modern society with regard to how individuals and society may encounter unexpected events in the future where the potential to reorient will be vital. (shrink)

This paper examines caregiving for sick older family members in the context of socio‐economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members’ weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to explicitly (...) protest or make care‐related choices. Underpinning people’s weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings. (shrink)

The aim was to synthesize the findings of empirical research about the unmet nursing care needs of older people, mainly from their point of view, from all settings, focusing on (1) methodological approaches, (2) relevant concepts and terminology and (3) type, nature and ethical issues raised in the investigations. A scoping review after Arksey and O’Malley. Two electronic databases, MEDLINE/PubMed and CINAHL (from earliest to December 2019) were used. Systematic search protocol was developed using several terms for unmet (...) care needs and missed care. Using a three-step retrieval process, peer-reviewed, empirical studies concerning the unmet care needs of older people in care settings, published in English were included. An inductive content analysis was used to analyse the results of the included studies (n = 53). The most frequently used investigation method was the questionnaire survey seeking the opinions of older people, informal caregivers or healthcare professionals. The unmet care needs identified using the World Health Organization classification were categorized as physical, psychosocial and spiritual, and mostly described individuals’ experiences, though some discussed unmet care needs at an organizational level. The ethical issues raised related to the clinical prioritization of tasks associated with failing to carry out nursing care activities needed. The unmet care needs highlighted in this review are related to poor patient outcomes. The needs of institutionalized older patients remain under-diagnosed and thus, untreated. Negative care outcomes generate a range of serious practical issues for older people in care institutions, which, in turn, raises ethical issues that need to be addressed. Unmet care needs may lead to marginalization, discrimination and inequality in care and service delivery. Further studies are required about patients’ expectations when they are admitted to hospital settings, or training of nurses in terms of understanding the complex needs of older persons. (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)

Many older people in western countries express a desire to live independently and stay in control of their lives for as long as possible in spite of the afflictions that may accompany old age. Consequently, older people require care at home and additional support. In some care situations, tension and ambiguity may arise between professionals and clients whose views on risk prevention or health promotion may differ. Following Antonovsky’s salutogenic framework, different perspectives between professionals and clients (...) on the pathways that lead to health promotion might lead to mechanisms that explain the origin of these tensions and how they may ultimately lead to reduced responsiveness of older clients to engage in care. This is illustrated with a case study of an older woman living in the community, Mrs Jansen, and her health and social care professionals. The study shows that despite good intentions, engagement, clear division of tasks and tailored care, the responsiveness to receive care can indeed not always be taken for granted. We conclude that to harmonize differences in perspectives between professionals and older people, attention should be given to the way older people endow meaning to the demanding circumstances they encounter (comprehensibility), their perceived feelings of control (manageability), as well as their motivation to comprehend and manage events (meaningfulness). Therefore, it is important that both clients and professionals have an open mind and attempt to understand each others’ perspective, and have a dialogue with each other, taking the life narrative of clients into account. (shrink)

Given the adage “older and wiser,” it seems justified to assume that older people may be stereotyped as more moral than younger people. We aimed to study whether assessments of a person’s morality differ depending on their age. We asked 661 individuals from seven societies (Australians, Britons, Burusho of Pakistan, Canadians, Dani of Papua, New Zealanders, and Poles) whether younger (~20-year-old), middle-aged (~40-year-old), or older (~60-year-old) people were more likely to behave morally and have (...) a sense of right and wrong. We observed that older people were perceived as more moral than younger people. The effect was particularly salient when comparing 20-year-olds to either 40- or 60-year-olds and was culturally universal, as we found it in both WEIRD (i.e. Western, Educated, Industrialized, Rich, Democratic) and non-WEIRD societies. (shrink)

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)

Conducting nursing research in long-term care facilities and with samples of older people requires careful attention to research ethics and the ethical conduct of the study. This review analysed the research ethics of the empirical studies that focus on older people in long-term care settings as research participants. Articles (n = 66) focussing on older people in long-term care settings as research informants were retrieved from an electronic search of MEDLINE (1990 to February 2012) (...) using the MESH terms ‘Nursing’ AND ‘Long-term care’ (578 citations) and ‘Institutionalization’ and ‘Nursing’ (89 citations). Ethical approval procedure was reported in more than half of the studies (58%) and informed consent in two-thirds of the studies (70%). Ethical issues in data collection were described in most of the articles, but only a few reported ethics in problem statement, reporting or presenting implications. There is a need to focus on reporting research ethics and procedures in empirical research on vulnerable people. (shrink)

Key commentators on person‐centred care have described it as a “new ethic of care” which they link inextricably to notions of individual autonomy, action, change and improvement. Two key points are addressed in this article. The first is that few discussions about ethics and person‐centred are underscored by any particular ethical theory. The second point is that despite the espoused benefits of person‐centred care, delivery within the acute care setting remains largely aspirational. Choices nurses make about their practice tend to (...) comply more often with prevailing norms than those championed by person‐centred care. We draw on elements of work by moral philosopher Løgstrup and Foucault to provide insight into nurses’ ethical conduct and ask why nurses would want to act otherwise, when what they think and do is viewed as normal, or think and act otherwise if doing so is seen within the organization as transgressive? To address these more specific questions, we discuss them in relation to the following constructs: the ethical demand, sovereign expressions of life and parrhêsia. We conclude by arguing that a ethical theoretical framework enables nurses to increase their perceptibility and appreciation of the ethical demand particularly those emanating from incommensurability between organizational norms and the norms invoked by person‐centred care. We argue that nurses’ responses to the ethical demand by way of parrhêsia can be an important feature of intra‐organizational reflexivity and its transformation towards the delivery care that is more person‐centred, particularly for older people with cognitive impairment. We conclude the article by highlighting the implications of this for nursing education and research. (shrink)

In the era of the “silent revolution” of an unstoppable aging of the world’s population, there is a question regarding the appropriateness and desirability of establishing a legal category called “elderly individuals” to address the gradual decline in physical and mental abilities associated with aging. This essay explores the potential designation of older people as an independent category under the law, considering that linking changes in their socio-legal status solely to the passage of time has been viewed as (...) a form of “subjective discrimination” by civil law scholars so far. While labor and social welfare laws have long recognized the “special status” of elderly individuals, and the EU has increasingly referred to them in recent consumer-focused legislation, the prevailing view in Italian civil doctrine opposes the creation of an “old subject” category, arguing that vulnerability cannot be considered an intrinsic and defining characteristic solely based on age. Notwithstanding that, the essay suggests that creating a group or category for vulnerable (elderly) individuals could have several advantages, including recognizing their rights, assigning obligations, implementing tailored procedures, and providing forms of protection. Moreover, it would offer an opportunity to reflect on the importance of empowering individuals and promoting their autonomy in using legal instruments to plan their future. (shrink)

The aim of this article is to reveal how care workers in the home-help services handle the process when older people’s relocation to a residential home is under consideration. Since the care workers are engaged daily in defining care receivers’ needs and yet have no formal influence on care decisions in Sweden, the focus is on how they solve this dilemma. In this inductive study, the theoretical framework is based on occupational alliances, relationship-based practice, and discretion. Thirty-three care (...) workers in home-help services are included in open semi-structured interviews. Prominent features in the findings are that the care workers take their stand at the borderland of care management, when they know or try to find out what is right. The conclusions drawn are that care workers find ways to informally influence the decision-making process, quite contrary to the idea of approaches referred to as purchaser/provider models. The implications for social work policy and practice are that a distinction between assessment and intervention may not benefit the field of eldercare and should therefore be regarded as an area in need of thorough reconsideration. (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)

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)

This paper explores the relationship between dignity and robot care for older people. It highlights the disquiet that is often expressed about failures to maintain the dignity of vulnerable older people, but points out some of the contradictory uses of the word ‘dignity’. Certain authors have resolved these contradictions by identifying different senses of dignity; contrasting the inviolable dignity inherent in human life to other forms of dignity which can be present to varying degrees. The Capability (...) Approach (CA) is introduced as a different but tangible account of what it means to live a life worthy of human dignity. It is used here as a framework for the assessment of the possible effects of eldercare robots on human dignity. The CA enables the identification of circumstances in which robots could enhance dignity by expanding the set of capabilities that are accessible to frail older people. At the same time, it is also possible within its framework to identify ways in which robots could have a negative impact, by impeding the access of older people to essential capabilities. It is concluded that the CA has some advantages over other accounts of dignity, but that further work and empirical study is needed in order to adapt it to the particular circumstances and concerns of those in the latter part of their lives. (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.

Background: The tension between care-based and technology-based rationalities motivates studies concerning how technology can be used in the care sector to support the relational foundation of care. Objectives: This study interprets values related to care and technologies connected to the practice of good care. Research design: This research study was part of a development project aimed at developing innovative work practices through information and communication technology. Participants and research context: All staff (n = 18) working at two wards in a (...) care facility for older people were asked to participate in interviews, and 12 accepted. We analysed the data using latent content analysis in combination with normative analysis. Ethical considerations: The caregivers were informed that participation was voluntary and that they could drop out at any time without providing any explanation. Findings: Four values were identified: ‘presence’, ‘appreciation’, ‘competence’ and ‘trust’. Caregivers wanted to focus on care receivers as unique persons, a view that they thought was compromised by time-consuming and beeping electronic devices. Appraising from next-of-kin and been seen as someone who can contribute together with knowledge to handle different situations were other desires. The caregivers also desired positive feedback from next-of-kin, as they wanted to be seen as professionals who have the knowledge and skills to handle difficult situations. In addition, the caregivers wanted their employer to trust them, and they wanted to work in a calm environment. Discussion: Caregivers’ desire for disturbance-free interactions, being valued for their skills and working in a trustful working environment were interpreted as their base for providing good care. The caregivers’ arguments are based on caring rationality, and sometimes they felt the technological rationality interfered with their main mission, providing quality care. Conclusion: Introducing new technology in caring should support the caring relationship. Although society’s overall technology-based approach may have gained popularity as a problem solver, technology-based rationality may compromise a care-based rationality. A shift in attitudes towards care as a concept on all societal levels is needed. (shrink)