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End of life care

The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. Aim: To explore patient and family caregivers’ views of managing medications when someone is seriously ill and dying at home.

Tue, 07/26/2022 - 10:52

The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data

Background: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment.

Sun, 06/05/2022 - 18:18

Faith-sensitive end of life care for children, young people and their families

This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the most prevalent religions within the UK. This article is intended to give points for discussion and consideration, but health professionals are encouraged to speak to every patient and family on an individual level to ensure an understanding of their personal beliefs.

Sun, 05/15/2022 - 17:35

“Achieve the best while rushing against time": A grounded theory study on caring for low-income immigrant cancer patients at end of life

Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families.

Tue, 11/30/2021 - 15:05

Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation

Objectives Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers. Methods A longitudinal study was performed in five hospitals in Taipei, Taiwan.

Tue, 04/06/2021 - 12:07

After providing end of life care to relatives, what care options do family caregivers prefer for themselves?

Objectives: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care. Methods: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs.

Mon, 11/16/2020 - 12:19

Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts

Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease.

Mon, 11/16/2020 - 12:05

Equity and the financial costs of informal caregiving in palliative care: A critical debate

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care.

Mon, 07/27/2020 - 12:43

Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems.

Wed, 01/22/2020 - 10:56

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services.

Mon, 06/10/2019 - 14:20

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