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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

The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process.

Thu, 03/28/2019 - 12:22

Role of family caregivers' self-perceived preparedness for the death of the cancer patient in long-term adjustment to bereavement

Background: A substantial number of family caregivers go through bereavement because of cancer, but little is known about the bereaved caregivers' long-term adjustment. This study aimed to document levels of bereavement outcomes (prolonged grief symptoms, intense emotional reaction to the loss, depressive symptoms, and life satisfaction) among family cancer caregivers 3-5 years post-loss and to investigate how self-rated preparedness for the patient's death predicted those bereavement outcomes.

Tue, 10/23/2018 - 11:38

The complex relationship between household income of family caregivers, access to palliative care services and place of death: A national household population survey

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey.

Mon, 10/22/2018 - 13:43

Recommendations from the Salzburg Global Seminar on Rethinking Care Toward the End of Life

Objective: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS.

Thu, 08/30/2018 - 10:37

The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years

Objective: Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts.  Methods: Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands.

Wed, 06/06/2018 - 14:21

Committed to carers: supporting carers of people at the end of life

Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved.

Thu, 07/20/2017 - 15:23

The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia

BACKGROUND: Deciding how to treat patients with end-stage dementia developing potentially fatal events has long been contentious. Under expected new legislation the role of carers is likely to increase. Old age psychiatrists frequently have to decide between active or palliative approaches to such patients. Little is known concerning the comparative attitudes of carers and old age psychiatrists. This research examined how their attitudes differed.

Thu, 07/20/2017 - 15:22

Life after caring: The post-caring experiences of former carers

This qualitative study was informed by grounded theory and data were gathered primarily through semi-structured in-depth interviews with thirty-seven theoretically sampled former carers. They were all white British, lived in the East Midlands and were predominately over sixty (68 per cent) and female (70 per cent). With the exception of one, all had cared for a close relative, 65 per cent having cared for a partner/spouse. Most of their dependants were older adults and each case the cessation of caring had coincided with the death of the dependant.

Thu, 07/20/2017 - 15:22

Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers

Objective: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country.

Design: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews.

Settings: Lothian region, Scotland, and Meru District, Kenya.

Thu, 07/20/2017 - 15:22