TY - JOUR

T1 - Dying, death and bereavement

T2 - a qualitative study of the views of carers of people with heart failure in the UK.

AU - Small, Neil

AU - Barnes, Sarah

AU - Gott, Merryn

AU - Payne, Sheila

AU - Parker, Chris

AU - Seamark, David

AU - Gariballa, Salah

N1 - © 2009 Small et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

PY - 2009/6/16

Y1 - 2009/6/16

N2 - Background This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer. Methods Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST. Results Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling. Discussion Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

AB - Background This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer. Methods Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST. Results Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling. Discussion Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

U2 - 10.1186/1472-684X-8-6

DO - 10.1186/1472-684X-8-6

M3 - Journal article

VL - 8

SP - 6

EP - 15

JO - BMC Palliative Care

JF - BMC Palliative Care

SN - 1472-684X

IS - 6

ER -