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Palliative care

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.

Fri, 01/24/2020 - 10:07

The experiences of family members witnessing the diminishing drinking of a dying relative: An adapted meta-narrative literature review

Background: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life. Aim: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research. Design: An adapted meta-narrative review approach.

Thu, 01/23/2020 - 12:01

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

Background: Determining the effect of caregiving and bereavement remains a challenge.

Thu, 01/23/2020 - 10:16

Dying in acute hospitals: voices of bereaved relatives

Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey.

Thu, 01/23/2020 - 09:35

Development of a family caregiver needs-assessment scale for end-of-life care for senility at home (FADE)

Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses.

Wed, 01/22/2020 - 16:26

Development and Implementation of the Family Caregiver Decision Guide

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG).

Wed, 01/22/2020 - 16:13

Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective

Background: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives.

Wed, 01/22/2020 - 12:39

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

Long-term prevalence and predictors of prolonged grief disorder amongst bereaved cancer caregivers: A cohort study

Context The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated. Objectives The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers.

Wed, 12/18/2019 - 12:30

Family Caregivers' Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India

Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers' experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage.

Wed, 12/18/2019 - 12:04

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