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Palliative care

The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

Objective: The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received?

Mon, 03/11/2019 - 10:00

A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life

Background: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. Aims: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience.

Thu, 03/07/2019 - 15:39

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed.

Thu, 03/07/2019 - 15:19

Costs of formal and informal care in the last year of life for patients in receipt of specialist palliative care

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost.

Thu, 03/07/2019 - 12:15

The experiences of patients with advanced cancer and caregivers presenting to Emergency Departments: A qualitative study

Background: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations.; Aim: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers.; Design: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers.

Wed, 02/06/2019 - 13:03

Developing compassionate communities in Australia through collective caregiving: a qualitative study exploring network-centred care and the role of the end of life sector

Background: The new public health palliative care movement calls for a move away from an individualised model of caregiving to a whole of community approach which will increase expectations on community carers. In order to avoid carer isolation, exploitation and potential burnout there is then a very real need to understand environments and relationships which support collective community caregiving.

Fri, 02/01/2019 - 12:33

Psychometric evaluation and cultural adaptation of the Spanish version of the "Scale for End-of Life Caregiving Appraisal"

Objective: To translate, culturally adapt, and psychometrically evaluate the Spanish version of the "Scale for End-of Life Caregiving Appraisal" (SEOLCAS).; Method: Observational cross-sectional study. Convenience sample of 201 informal end-of-life caregivers recruited in a southern Spanish hospital. The reliability of the questionnaire was assessed through its internal consistency (Cronbach's α) and temporal stability (Pearson's correlation coefficient [r] between test-retest). The content validity index of the items and the scale was calculated.

Fri, 02/01/2019 - 12:00

Caring for patients with brain tumors compared to patients with non-brain tumors: Experiences and needs of informal caregivers in home care settings

Background/objective: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients.; Methods: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively.

Fri, 02/01/2019 - 11:44

Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia.

Fri, 02/01/2019 - 11:31

The indirect costs of palliative care in end-stage cancer: A real-life longitudinal register- and questionnaire-based study

Background: Palliative care needs are increasing as more people are dying from incurable diseases.

Fri, 02/01/2019 - 10:55

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