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Palliative care

Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis

Background: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. Aim: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. Design: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies.

Tue, 10/22/2019 - 15:53

Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.

Thu, 10/10/2019 - 12:11

A Formative Evaluation of Patient and Family Caregiver Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease across Disease Severity

Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers.

Thu, 10/10/2019 - 09:56

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Context: The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives: The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods: This is a systematic review of reviews.

Wed, 10/09/2019 - 13:07

Costs of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool

BACKGROUND: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire.

Wed, 10/09/2019 - 11:19

Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life.

Mon, 10/07/2019 - 13:09

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base.

Mon, 10/07/2019 - 10:49

In Their Own Words: Experiences of Caregivers of Adults With Cancer as Expressed on Social Media

PURPOSE: To explore caregivers' writings about their experiences caring for adult individuals with cancer on a social media health communication website. PARTICIPANTS & SETTING: Journal entries (N = 392) were analyzed for 37 adult caregivers who were posting on behalf of 20 individuals with cancer. CaringBridge is a website used by patients and informal caregivers to communicate about acute and chronic disease. METHODOLOGIC APPROACH: A retrospective descriptive study using qualitative content analysis of caregivers' journal entries from 2009 to 2015.

Mon, 09/30/2019 - 13:04

Availability of informal caregivers for palliative care patients with cancer: Is there a difference between higher- and lower-income settings

Objective: Family caregivers are the default caring personnel for terminal cancer patients. The characteristics, demographics, distribution, psychological burden, and socioeconomic standards differ between high- and low-income countries. We aimed to assess those factors and their direct reflection on both the patient and the caregiver. Patients and Methods: This is a comparative cross-sectional study for terminal cancer patients in the palliative care unit between the United Kingdom (UK) as a high-income community and Egypt as a low-income community.

Mon, 09/30/2019 - 11:32

Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada

Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits.

Wed, 09/25/2019 - 16:39

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