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The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire
The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire
Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them ‘rewarding’. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.

community care, end-of-life care, palliative care, provision of care, satisfaction with care, stroke
0966-0410
419-428
Young, Amanda J.
6bb7aa9c-776b-4bdd-be4e-cf67abd05652
Rogers, Angie
4fad378d-4cf3-4f43-bbd0-571452b242cd
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8
Young, Amanda J.
6bb7aa9c-776b-4bdd-be4e-cf67abd05652
Rogers, Angie
4fad378d-4cf3-4f43-bbd0-571452b242cd
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8

Young, Amanda J., Rogers, Angie and Addington-Hall, Julia (2008) The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire. Health & Social Care in the Community, 16 (4), 419-428. (doi:10.1111/j.1365-2524.2007.00753.x). (PMID:18221486)

Record type: Article

Abstract

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them ‘rewarding’. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.

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Published date: July 2008
Keywords: community care, end-of-life care, palliative care, provision of care, satisfaction with care, stroke
Organisations: Faculty of Health Sciences

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Local EPrints ID: 345296
URI: http://eprints.soton.ac.uk/id/eprint/345296
ISSN: 0966-0410
PURE UUID: c2b0917b-42ee-43ca-b250-5b12312feefa
ORCID for Amanda J. Young: ORCID iD orcid.org/0000-0002-1486-5561

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Date deposited: 16 Nov 2012 08:56
Last modified: 15 Mar 2024 03:15

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Author: Amanda J. Young ORCID iD
Author: Angie Rogers

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