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End of life care

After providing end of life care to relatives, what care options do family caregivers prefer for themselves?

Objectives: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care. Methods: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs.

Mon, 11/16/2020 - 12:19

Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts

Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease.

Mon, 11/16/2020 - 12:05

Equity and the financial costs of informal caregiving in palliative care: A critical debate

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care.

Mon, 07/27/2020 - 12:43

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

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services.

Mon, 06/10/2019 - 14:20

Meeting the needs of carers of people at the end of life

Carers have a vital role in end of life care in all settings. They are essential in enabling people to live at home at the end of their lives. Carers give and receive care, and have a range of support needs related to this complex role. This article explores the context of caring at the end of life and considers the experience of carers, in particular those who have a non-professional and unpaid relationship with someone who is at the end of life, and the support they require.

Mon, 04/01/2019 - 12:54

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

Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention

Background An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework.

Wed, 01/30/2019 - 18:30

The Influence of Context and Practitioner Attitudes on Implementation of Person-Centered Assessment and Support for Family Carers Within Palliative Care

Background The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care.

Wed, 01/30/2019 - 18:23

Palliative care services for people with dementia: a synthesis of the literature reporting the views and experiences of professionals and family carers

The experience of being a carer of a person with dementia at the end of life is expressed in these 12 accounts. This is a synthesis of the concerns and challenges for carers at the end of life. These accounts are often insightful and provide several views of carers’ and professionals’ experience. Having a close relationship as a carer gives a unique and poignant view. What emerges from this review is a range of perspectives that provide contrasting views of the heterogeneity of carers and professionals.

Thu, 07/20/2017 - 15:24

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