The Ethics of Electronic Tracking Devices in Dementia Care: An Interview Study with Developers.

Wandering is a symptom of dementia that can have devastating consequences on the lives of persons living with dementia and their families and caregivers. Increasingly, caregivers are turning towards electronic tracking devices to help manage wandering. Ethical questions have been raised regarding these location-based technologies and although qualitative research has been conducted to gain better insight into various stakeholders' views on the topic, developers of these technologies have been largely excluded. No qualitative research has focused on developers' perceptions of ethics related to electronic tracking devices. To address this, we performed a qualitative semi-structured interview study based on grounded theory. We interviewed 15 developers of electronic tracking devices to better understand how they perceive ethical issues surrounding the design, development, and use of these devices within dementia care. Our results reveal that developers are strongly motivated by moral considerations and believe that including stakeholders throughout the development process is critical for success. Developers felt a strong sense of moral obligation towards topics within their control and a weaker sense of moral obligation towards topics outside their control. This leads to a perceived moral boundary between development and use, where some moral responsibility is shifted to end-users.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

'If you build it, they will come to the wrong door: evaluating patient and caregiver-initiated ethics consultations via a patient portal'.

OBJECTIVES: Memorial Sloan Kettering Cancer Center (MSK) sought to empower patients and caregivers to be more proactive in requesting ethics consultations. METHODS: Functionality was developed on MSK's electronic patient portal that allowed patients and/or caregivers to request ethics consultations. The Ethics Consultation Service (ECS) responded to all requests, which were documented and analysed. RESULTS: Of the 74 requests made through the portal, only one fell under the purview of the ECS. The others were primarily requests for assistance with coordinating clinical care, hospital resources or frustrations with the hospital or clinical team. DISCUSSION: To better empower patients and caregivers to engage Ethics, healthcare organisations and ECSs must first provide them with accessible, understandable and iterative educational resources. CONCLUSION: After 19.5 months, the 'Request Ethics Consultation' functionality on the patient portal was suspended. Developing resources on the role of Ethics for our patients and caregivers remains a priority.

The Impact of Cultural Factors, The Level of Health Education Received by the Caregivers, and Stigma on Asthma Treatment among Children in Southern Jordan

Abstract For asthma treatment in children, caregivers need good knowledge and attitudes regarding the disease and its treatment. This study aimed to determine the impact of cultural factors, the level of health education provided to patients and their families, as well as the impact of stigmatization on the treatment awareness of children with asthma in southern Jordan. A validated questionnaire was used to collect data from a sample of ninety-seven caregivers selected from three hospitals in southern Jordan. Open ended questions were answered after demonstrating the inhaler technique in and evaluated according to the instructions of the National Asthma Education and Prevention Program (NAEPP, 2013). The result revealed moderate knowledge of asthma with a mean score of (22.36/32), as well as moderate knowledge of asthma treatment (24.26/40). A high mean was found for the impact of cultural and environmental factors (22.93/28), whereas low impact was found for stigma with a mean value of (4.73/12). Therefore, to improve future asthma management, additional efforts are required to educate caregivers and improve their asthma awareness and rectify any falsehoods regarding asthma medications by health care providers.

Between a woman and her fetus: Bedouin women mediators advance the health of pregnant women and babies in their society.

INTRODUCTION: Bedouin women in Israel confront a challenging circumstance between their traditional patriarchal society and transition to modernity. In terms of reproductive health, they face grave disparities as women, pregnant women and mothers. In this article we aim to understand the challenges of Bedouin women who work as mediators in the promotion of Bedouin women's perinatal health. We explore their challenges with the dual and often conflictual role as health peer-instructors-mediators in mother-and-child clinics, and also as members of a Bedouin community, embodying a status as women, mothers, and family caretakers. Drawn upon a feminist interpretative framework, the article describes their challenges in matters of perinatal health. Our research question is: how do women who traditionally suffer from blatant gender inequality utilize health-promotion work to navigate and empower themselves and other Bedouin women. METHODS: Based on an interpretive feminist framework, we performed narrative analysis on eleven in-depth interviews with health mediators who worked in a project in the Negev area of Israel. The article qualitatively analyses the ways in which Bedouin women mediators narrate their challenging situations. RESULTS: This article shows how difficult health mediators' task may be for women with restricted education who struggle for autonomy and better social and maternal status. Through their praxis, women mediators develop a critical perspective without risking their commitments as women who are committed to their work as well as their society, communities, and families. These health mediators navigate their ways between the demands of their employer (the Israeli national mother and child health services) and their patriarchal Bedouin society. While avoiding open conflictual confrontations with both hegemonic powers, they also develop self-confidence and a critical and active approach. CONCLUSIONS: The article shows the ways by which the mediator's activity involved in perinatal health-promotion may utilize modern perinatal medical knowledge to increase women's awareness and autonomy over their pregnant bodies and their role as caregivers. We hope our results will be applicable for other women as well, especially for women who belong to other traditional and patriarchal societies.

Ethical Considerations of Social Media to Recruit Caregivers of Children With Cancer.

BACKGROUND: Social media platforms are useful for recruiting hard-to-reach populations, such as caregivers of children with cancer, for research. However, there are unique ethical considerations in using social media. OBJECTIVES: The aim of the study was to describe the methods used to recruit hard-to-reach caregivers (parents of children with cancer) for research and related ethical considerations. METHODS: We used The Belmont Report tenets (respect for persons, beneficence, and justice) as a guiding framework to identify issues relevant to social media recruitment of hard-to-reach populations and to describe how we addressed these issues in our study. RESULTS: We engaged leaders of two online communities that offer peer support for caregivers of children with cancer to help with recruitment to our study on financial effect of pediatric cancer. We identified issues in using social media for recruiting hard-to-reach populations in alignment with The Belmont Report, including risk for subject selection bias, privacy rights, protecting identity of participants, data security issues, and access to research. We addressed issues by deliberate study design decisions and engagement with online community advocates. DISCUSSION: Using social media to recruit hard-to-reach populations may be a successful way to engage them in research. Although researchers may remain compliant with the institutional review board of their facilities and are faithful to the tenets of The Belmont Report, unanticipated ethical issues may arise directly or indirectly as a result of using social media. This article identifies these issues and provides suggestions for dealing with them.

"Who to Tell, How and When?": Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis.

OBJECTIVE: This study describes the adaptation of Honest, Open, Proud (HOP), to develop an empowerment intervention supporting disclosure decision-making for dyads of people living with dementia and their chosen supporter. METHODS: Medical Research Council guidelines for developing complex interventions informed intervention development and feasibility testing. This included identifying the evidence base and theory (establishing HOP theory of change, a systematic review on decision-making in dementia, a stakeholder consultation), modelling the intervention materials with research experts (creation of version 1.0) and experts by experience (creation of version 2.0), and pilot testing the intervention recording participant observations and facilitator reflections. The final version of the intervention materials was developed with experts by experience of dementia where the accessibility of language and appropriate styles of facilitation were the focus. RESULTS: The concept of the intervention was strongly endorsed by respondents of the stakeholder consultation (209/226). Stakeholder preferences included face-to-face delivery, a manualized workbook approach and the inclusion of the primary carer during intervention delivery. Recruitment for intervention groups took place in non-NHS settings (2 small groups recruited) and NHS settings (no groups recruited). In non-NHS settings, 7 dyads agreed to take part in one of two intervention groups. Both intervention groups had over 70% attendance by participants (group 1: 72.2% group 2: 87.5%). CONCLUSION: The concept of an intervention to support diagnostic disclosure was endorsed by stakeholders; however, recruitment was challenging; the "who to tell, how and when?" intervention has the potential to fill a gap in the post-diagnostic pathway.

Weiqu, structural injustice and caring for sick older people in rural Chinese families: An empirical ethical study.

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.

Caring for People with Disabilities: An Ethics of Respect.

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

Objective and Subjective Dementia Caregiving Burden: The Moderating Role of Immanent Justice Reasoning and Social Support.

Caregiving burden significantly effects the physical and mental health of family dementia caregivers. While the association between objective caregiving burden (OCB) and subjective caregiving burden (SCB) of family dementia caregivers is well documented, little is known as with how the association is moderated by the configuration of intrapersonal resource (e.g., immanent justice reasoning) and interpersonal resource (e.g., social support). The present study collected cross-sectional data on 157 major family caregivers of non-institutionalized persons with dementia in an urbanizing region of Western China's Sichuan Province. They responded to questions on daily time spent on caregiving, the short version of Zarit Burden Interview (ZBI), a sub-scale of a caregiver meaning scale, Social Support Rating Scale (SSRS), and demographic questions. Controlling for the demographic variables of the caregivers, this study found that the objective and subjective dementia caregiving burden were significantly associated (p < 0.001), and immanent justice reasoning was positively correlated with subjective burden (p < 0.01). Moreover, the association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both high (p < 0.001), but neutral when social support was high and immanent justice reasoning was low. The association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both low (p < 0.05), but neutral when social support was low and immanent justice reasoning was high. This research suggests the importance of developing intervention programs that consider the configuration of the external supporting resources and internal meaning-making of caregiving of the family dementia caregivers.

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR): Part 1.

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process. A framework for Patient and Informal Caregiver Participation In Research (PAICPAIR) is suggested-creating a stronger foundation for democracy, equality, and research quality by also promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as coresearchers.

Barriers to recruiting and retaining psychosis carers: a case study on the lessons learned from the Caring for Caregivers (C4C) trial.

OBJECTIVE: Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. RESULTS: We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient's (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017.

A feminist phenomenology on the emotional labor and morality of live-in migrant care workers caring for older people in the community.

BACKGROUND: Global societal changes, such as increasing longevity and a shortage of family caregivers, have given rise to a popular worldwide trend of employing live-in migrant care workers (MCWs) to provide homecare for older people. However, the emotional labor and morality inherent in their interactions with older people are largely unknown. The aim of the present study is to understand the corporeal experiences of live-in migrant care workers in the delivery of emotional labor as seen in their interactions with older people by: (1) describing the ways by which they manage emotional displays with older people; and (2) exploring their morality as enacted through emotional labor. METHODS: We performed a secondary analysis drawing on feminist phenomenology to thematically analyze data from interviews with 11 female MCWs. Follow-up interviews were conducted with 10 participants. The participants had two to 15 years of experience in caring for older people in their homes in Hong Kong. RESULTS: Performing emotional labor by suppressing and inducing emotions is morally demanding for live-in MCWs, who experience socio-culturally oppressive relationships. However, developing genuine emotions in their relationships with older people prompted the MCWs to protect the interests of older people. Through demonstrating both fake and genuine emotions, emotional labor was a tactic that live-in MCWs demonstrated to interact morally with older people. CONCLUSIONS: Emotional labor allowed live-in MCWs to avoid conflict with older people, and to further protect their own welfare and that of others. This study highlights the significance of empowering live-in MCWs by training them in ways that will help them to adapt to working conditions where they will encounter diverse customs and older people who will develop an increasing dependence on them. Thus, there is a need to develop culturally appropriate interventions to empower live-in MCWs to deliver emotional labor in a moral manner.

Beyond the Disease: "...Am I My Brother's Keeper?"

Today, the concepts of health and illness require a global vision of man; the suffering of the person places the entire environment in great difficulty: health professionals, family, society. It is important not to simplify the response to a purely health-focused view of the disorder, because fragile people possess a deep need to feel welcomed, listened to, understood and accepted. Service provision that is respectful of the dignity of the person is an important challenge both for those who are responsible for providing services to individuals and their families as well as for the entire community. Therefore in providing care the human qualities of the health professional and not only his technical skills come into play: blending together science and humanitarian ethos. The provision of care therefore "forces" us to broaden our horizons and requires us to face the challenge of responsibility towards the Other, the human condition of being-for. However, ethical capacity cannot be born solely out of sharing standards or adhering to regulations and respecting prohibitions: it stems from high and unconditional moral values and meanings. The ME-YOU relationship represents the primary ethical factor of the human being: my responsibility towards the Other is unconditional. In the book of Genesis when the Lord asks Cain: "... where is Abel, your brother?" He responds with another question: "Am I my brother's keeper?" In this biblical passage Cain kills Abel: the rejection of brotherhood and the care of the other only leads to the death of the Other. "Where is your brother?" This question is crucial in today's day and age and must be taken seriously: it is the decisive question that forces us to decide how to place ourselves in relationship with the other and with the world: do we choose proximity or distance, connection or indifference?

Public responses to volunteer community care: Propositions for old age and end of life.

BACKGROUND: Funding shortages and an ageing population have increased pressures on state or insurance funded end of life care for older people. Across the world, policy debate has arisen about the potential role volunteers can play, working alongside health and social care professionals in the community to support and care for the ageing and dying. AIMS: The authors examined self-reported levels of care for the elderly by the public in England, and public opinions of community volunteering concepts to care for the elderly at the end of life. In particular, claimed willingness to help and to be helped by local people was surveyed. METHODS: A sample of 3,590 adults in England aged 45 or more from an online access panel responded to a questionnaire in late 2017. The survey data was weighted to be representative of the population within this age band. Key literature and formative qualitative research informed the design of the survey questionnaire, which was further refined after piloting. RESULTS: Preferences for different models of community volunteering were elicited. There was a preference for 'formal' models with increased wariness of 'informal' features. Whilst 32% of adults said they 'might join' depending on whom the group helped, unsurprisingly more personal and demanding types of help significantly reduced the claimed willingness to help. Finally, willingness to help (or be helped) by local community carers or volunteers was regarded as less attractive than care being provided by personal family, close friends or indeed health and care professionals. CONCLUSION: Findings suggest that if community volunteering to care for elderly people at the end of life in England is to expand it may require considerable attention to the model including training for volunteers and protections for patients and volunteers as well as public education and promotion. Currently, in England, there is a clear preference for non-medical care to be delivered by close family or social care professionals, with volunteer community care regarded only as a back-up option.

Living with/out Dementia in Contemporary South Korea.

While the debate on diagnostic disclosure is often based on the premise that knowing about one's condition (the diagnosis and its prognosis) is essential in securing the patient's autonomy, many people with dementia in Korea are not told directly about their diagnosis. This article concerns the laborious and ethically contentious post-diagnostic living undertaken by the families of people with dementia, which I call "living with/out dementia." This is a paradoxical form of living that has emerged through the increasing biomedicalization of dementia, the socialization of elder care, and an enduring fear of dependency in old age. Attending to how living with/out dementia comes to be initiated and maintained through efforts of care, I argue that nondisclosure entails a kind of ethical process through which dementia is un/done in the caregivers' struggle to truthfully engage with the person with dementia while actively hiding the diagnostic truth from him or her.

Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience.

This case study illustrates the complex role that a physician's conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state's "Patient Choice and Control at End of Life" Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician's engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.

Using brain-computer interfaces: a scoping review of studies employing social research methods.

BACKGROUND: The rapid expansion of research on Brain-Computer Interfaces (BCIs) is not only due to the promising solutions offered for persons with physical impairments. There is also a heightened need for understanding BCIs due to the challenges regarding ethics presented by new technology, especially in its impact on the relationship between man and machine. Here we endeavor to present a scoping review of current studies in the field to gain insight into the complexity of BCI use. By examining studies related to BCIs that employ social research methods, we seek to demonstrate the multitude of approaches and concerns from various angles in considering the social and human impact of BCI technology. METHODS: For this scoping review of research on BCIs' social and ethical implications, we systematically analyzed six databases, encompassing the fields of medicine, psychology, and the social sciences, in order to identify empirical studies on BCIs. The search yielded 73 publications that employ quantitative, qualitative, or mixed methods. RESULTS: Of the 73 publications, 71 studies address the user perspective. Some studies extend to consideration of other BCI stakeholders such as medical technology experts, caregivers, or health care professionals. The majority of the studies employ quantitative methods. Recurring themes across the studies examined were general user opinion towards BCI, central technical or social issues reported, requests/demands made by users of the technology, the potential/future of BCIs, and ethical aspects of BCIs. CONCLUSIONS: Our findings indicate that while technical aspects of BCIs such as usability or feasibility are being studied extensively, comparatively little in-depth research has been done on the self-image and self-experience of the BCI user. In general there is also a lack of focus or examination of the caregiver's perspective.

Older Adults with Alzheimer's Disease Who Have Used an Automatic Medication Dispenser for 3 or More Years.

This article describes four older adults with Alzheimer's disease and comorbidities who used an automatic medication dispenser (AMD) to continue pharmacotherapy for these chronic diseases and who remained at home living either alone or with an older spouse. The AMDs were used for 3 to 4.5 years. The patients scored at least 21 on the Mini-Mental State Examination, and their dosing regimen involved taking the medication once or twice per day throughout this period. The caregivers filled the devices with medications once every 1 to 2 weeks and continuously monitored the patients' conditions nearly every day. Additionally, one caregiver changed how the device is used to accommodate a participant's conditions. As a result of using the device, medication adherence remained good, and caregiver burden was reduced. The results indicate that an AMD can be used as a long-term medication management tool for some older adults with dementia when caregivers provide continued support, as described above. Further research is needed to clarify the necessary conditions for using an AMD and to identify benefits for older adults with dementia to use AMDs to take medication on a long-term basis.

Language and Culture in the Caregiving of People with Dementia in Care Homes - What Are the Implications for Well-Being? A Scoping Review with a Welsh Perspective.

The loss of language skills is one of the most challenging aspects of living with dementia. This is particularly true for bilingual individuals, who have difficulty in maintaining fluency in more than one language. Language and culture overlap greatly, with potential implications for the well-being of people with dementia (PWD) being cared for in their 'second' language or culture. Our aim was to review the available relevant literature, together with an examination of the potential effects of linguistic incongruity on healthcare in general for Welsh speakers in Wales. A literature search yielded 50 articles, which were analysed using the scoping review methodological framework. We found that the presence of cultural and linguistic congruity was beneficial for PWD living in care homes, and that their absence was detrimental. The absence of linguistic congruity is a strong predictor for decreased well-being in people in such settings, due to communication barriers between residents and carers, which result mainly from the loss of PWD's second language skills. Such barriers may lead to inappropriate care, e.g. being unable to obtain help to self-care, as well as social isolation. This review suggests that strategies need to be developed across the world to accommodate bilingual individuals requiring a care home for their dementia needs. There is a particular dearth of research regarding the influence of bilingualism on the experience of dementia care in those areas of the UK where the indigenous population are most likely to be bilingual (i.e. parts of Wales).