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Terminal care

Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care

Objective: The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. Methods: A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information.

Tue, 02/01/2022 - 15:52

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

Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers

This symposium includes twelve personal narratives from people who have provided care to a spouse, parent, another relative, or friend with Alzheimer disease or related dementias (ADRD). People with ADRDs often face years of cognitive decline with memory and thinking that eventually require help from others to assist with their daily activities. Most people caring for older adults in the US are unpaid family members, friends, or other informal caregivers. People providing care often experience emotional and physical stress, or financial burdens.

Fri, 12/11/2020 - 16:54

Elements of Family, Social Relationships, and Caregiving in Palliative Care mHealth: A Scoping Review (GP781)

Objectives: • Identify research-based and commercial mobile applications currently available to support palliative and end of life care.

Sat, 11/28/2020 - 16:46

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life

Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life.

Thu, 11/26/2020 - 16:59

Cultural Values, Preferences, and Goals of End-of-Life Care of Family Members of Patients with Life-Limiting Illness in Kumasi, Ghana: A Community-Based Study (GP702)

Objectives: • Recognize the Importance and relevance of culture to EOL care. • Describe CBPR and focus group methods. • Examine what patients with serious illness in Ghanaian hospital face.

Wed, 11/25/2020 - 17:47

Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers' experiences in metastatic melanoma

Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods.

Mon, 11/16/2020 - 10:39

Dying at home of cancer: Whose needs are being met? the experience of family carers and healthcare professionals (a multiperspective qualitative study)

Objectives Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: 'How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)? Methods A qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death.

Tue, 08/04/2020 - 13:54

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

BACKGROUND: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief.

Tue, 08/04/2020 - 12:35

Carer experience of end-of-life service provision: a social network analysis

Objective To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. Methods Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews.

Thu, 07/30/2020 - 14:04