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End-of-life

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death.

Mon, 03/22/2021 - 10:36

Consistency in End-of-Life Care Preferences Between Hospitalized Elderly Patients and Their Primary Family Caregivers

Purpose: This study explored the consistency between preferences for end-of-life care for elderly hospitalized patients and their primary caregivers and predictors of consistency. Patients and Methods: This cross-sectional correlational study recruited 100 dyads of elderly hospitalized patients and their primary caregivers from a medical center in Central Taiwan.

Thu, 03/18/2021 - 17:52

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.

Fri, 12/11/2020 - 14:00

Comparing Symptom Ratings by Staff and Family Carers in Residents Dying in Long-Term Care Facilities in Three European Countries, Results From a PACE Survey

Context Symptom management is essential in the end-of-life care of long-term care facility residents. Objectives To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. Methods A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort.

Tue, 11/24/2020 - 19:45

Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers

Background: While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing.

Mon, 11/23/2020 - 10:45

Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Wha Older person's Palliative Care Model

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years.

Mon, 08/03/2020 - 15:42

"I Don't Feel Like I Have Any Control of My Life at All . . . Everything Overwhelms Me. Everything": Analyzing Caregiver Uncertainty and Control Through Stance Marking

Informal caregivers immersed in the daily care of loved ones at end-of-life stages face such challenges as medical and household issues, worries, doubts, and uncertainties. Using a macro-mezzo-micro approach to discourse, we analyzed parent study interview data involving 46 caregivers facing end-of-life realities. At the mezzo level, we examined caregivers' expressed perceptions of control. We then more finely analyzed discursive expressions of affective stances pertaining to caregivers' emotions and feelings, and epistemic stances pertaining to their knowledge and belief states.

Wed, 09/25/2019 - 16:12

Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia

Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data.

Tue, 06/18/2019 - 16:47

Impact of medical assistance in dying (MAiD) on family caregivers

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief.

Thu, 06/13/2019 - 14:20

Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs.

Tue, 06/11/2019 - 12:09

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