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Palliative care

Evaluation of the usability, accessibility and acceptability for a family support intervention (Family-Focused Support Conversation) for end of life care discharge planning from hospital: A participatory learning and action research study

Background: Family support is internationally recognised as integral to palliative care. However, during end of life care discharge planning from hospital, families report a lack of opportunity to discuss their concerns or contribute their knowledge of the ill family member and consequently feel unheard and unsupported.

Sat, 08/27/2022 - 11:40

Determinants of primary and non‐primary informal care‐giving to home‐based palliative care cancer care‐recipients in Ontario, Canada

Background: Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. Objectives: The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants.

Wed, 08/24/2022 - 15:19

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study

Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible.

Wed, 08/24/2022 - 12:33

Care Associated With Satisfaction of Bereaved Family Members of Terminally Ill Cancer Patients With Dyspnea: A Cross-sectional Nationwide Survey

Background: Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. Objectives: This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families' satisfaction with care for terminal dyspnea, and explore determinants contributing to families' satisfaction.

Tue, 08/23/2022 - 17:14

Reliability, validity and acceptability of the traditional Chinese version of the carer support needs assessment tool in Hong Kong palliative care settings

Background: Among the few existing needs assessment tools for family carers, the 14-item Carer Support Needs Assessment Tool (CSNAT) is the only brief and holistic needs screening tool designed for everyday use in palliative care practices. The aim of this study was to evaluate the reliability, validity, and acceptability of the traditional Chinese version of the CSNAT in palliative care settings in Hong Kong. Methods: This adopted a cross-sectional and correlation design with repeated measures.

Tue, 08/23/2022 - 15:41

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Objectives: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Methods: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019.

Tue, 08/23/2022 - 15:00

Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries

Background: Although family caregivers (FCs) play an important role in the care provided to incurable cancer patients in our region, little is known about the burden they experience. Objectives: This study was conducted to determine the prevalence of caregiver burden (CB) among FCs of incurable cancer patients in two Eastern Mediterranean countries and to identify factors that may be associated with significant CB. Methods: The study included 218 FCs, 165 from Egypt and 53 from Saudi Arabia.

Mon, 08/22/2022 - 12:07

A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis

Background: Pulmonary fibrosis is an incurable lung disease that leads to significant morbidity. In many patients, pulmonary fibrosis is progressive causing debilitating dyspnea that impairs patients' ability to perform everyday tasks and maintain independence. Informal caregivers provide invaluable support for patients with pulmonary fibrosis; however, support for the caregiver is inadequate. Objective: The purpose of this scoping review is to identify unmet needs for caregivers of pulmonary fibrosis patients.

Wed, 08/10/2022 - 19:45

“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

Background: Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families.

Fri, 07/29/2022 - 20:27

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

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