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Ethics

Common ethical dilemmas of family caregivers of palliative patients in Indonesia

Background: Family caregivers, especially in Asian countries, have a profound role in caring for a sick family member. However, there are wide variations between the Asian and western world in terms of culture and facilities. Therefore, the problems and needs of family caregivers between those two regions may also be distinct, and it is important to explore and elaborate based on our empirical evidence. In Indonesia, motives and values in caregiving and religion become the wheel-power of the family caregivers in providing care.

Mon, 01/31/2022 - 18:32

Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking

Background and Objectives Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies.

Fri, 01/22/2021 - 16:32

Who Cares? An Existential Perspective of Caregiving for Individuals With a Left Ventricular Assist Device

The goal of a LVAD is to extend life expectancy, improve physical strength and quality of life, and allow individuals to be discharged home. When making decisions for a family member to receive a LVAD, caregivers are asked to confront a sophisticated technology with not only the potential to extend life expectancy and improve quality of life but also risks for complications and burdens.

Fri, 01/22/2021 - 16:22

Ethical challenges in family caregivers of patients with advanced cancer - A qualitative study

Background: Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. Methods: Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide.

Wed, 08/12/2020 - 12:58

Mental health of carers in Wales: a national population survey

Background Informal care is increasingly common in ageing populations. However, the impact of caring responsibilities on carers’ mental health remains unclear. We used data from the HealthWise Wales (HWW) cohort to examine the impact of caregiving on the mental health of carers. Methods HWW collects demographic, lifestyle, and opinion data, which are linked to routine health-care records, from individuals aged 16 years or older who live in Wales, UK (n=21 779).

Wed, 12/18/2019 - 11:58

Struggling for a dignifying care: experiences of being next of kin to patients in home health care

Background Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. Aim The aim of this study was to explore next of kin's views of dignity in home healthcare services. Methods This study has a qualitative approach and content analysis was applied.

Wed, 12/18/2019 - 10:24

The legal, governance and ethical implications of involving service users and carers in research

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions.

Mon, 10/14/2019 - 12:24

Commentary on the paper 'Dementia diagnosis and white lies: a necessary evil for carers of dementia patients?'

‘Thou shalt not lie’; ‘the truth, the whole truth, and nothing but the truth’. Both morality and the law contain clear statements about the importance of veracity. Yet, as Ginny Russell so eloquently describes, based upon personal experience with her mother in the UK, truth telling in dementia is fraught with problems. The problems are not only ethical, but can also be practical and emotional. They can arise on a daily basis for the family and friends of people with dementia, as well as for care staff and professionals.

Thu, 05/23/2019 - 14:45

The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers.

Thu, 03/28/2019 - 15:14

Inform with care: ethics and information in care for people with dementia

Good care is often positioned as a natural by-product of the widespread availability of good information (‘inform to care’). This paper contests this association through empirical investigation of the information–care relationship in the context of dementia care.

Thu, 07/20/2017 - 15:24

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