Family caregivers in palliative care : perception of their role and sources of support
Family caregivers in palliative care : perception of their role and sources of support
Although previous literature has examined family caregiving in a number of environments, there has been a lack of information and understanding of the nature of family caregiving within palliative care.
Two studies were undertaken to establish the expected and actual role and position of family caregivers in palliative care, from a health professional and a lay person perspective. In the first study health professionals from a range of backgrounds in both primary care and specialist palliative care were approached to discover their perception of family caregiving and their role in palliative care. Secondly the family caregiver's perspective of their role and potion in palliative care was examined using a case study methodology. In addition, this second study also sought to understand the nature of the relationship of family caregivers with visiting health professionals and other sources of social support.
The findings revealed that family caregivers in palliative care settings are frequently in an ambiguous position. Whilst they are considered essential to the well being of a palliative care patient, there are little or no guidelines for health professionals as to the role of these individuals within a total package of care. Family caregivers themselves are often equivocal about their role, and many do not identify with the term 'carer' at all. Because of the ambiguity, family caregivers often assume a subservient role to that of the patient and ignore or deny their own needs for emotional support. Their relationship with health professionals is often limited to discussions of care and management of the ill person, rather than their own needs. In addition they often act as co-ordinators of information between health professionals. Family caregivers seek emotional and practical help from other family members first and foremost, and friends and neighbours generally in the absence of close family support.
University of Southampton
Smith, Paula Caroline
f93bbe1b-7150-4c6d-8181-d94fe73fe067
2000
Smith, Paula Caroline
f93bbe1b-7150-4c6d-8181-d94fe73fe067
Smith, Paula Caroline
(2000)
Family caregivers in palliative care : perception of their role and sources of support.
University of Southampton, Doctoral Thesis.
Record type:
Thesis
(Doctoral)
Abstract
Although previous literature has examined family caregiving in a number of environments, there has been a lack of information and understanding of the nature of family caregiving within palliative care.
Two studies were undertaken to establish the expected and actual role and position of family caregivers in palliative care, from a health professional and a lay person perspective. In the first study health professionals from a range of backgrounds in both primary care and specialist palliative care were approached to discover their perception of family caregiving and their role in palliative care. Secondly the family caregiver's perspective of their role and potion in palliative care was examined using a case study methodology. In addition, this second study also sought to understand the nature of the relationship of family caregivers with visiting health professionals and other sources of social support.
The findings revealed that family caregivers in palliative care settings are frequently in an ambiguous position. Whilst they are considered essential to the well being of a palliative care patient, there are little or no guidelines for health professionals as to the role of these individuals within a total package of care. Family caregivers themselves are often equivocal about their role, and many do not identify with the term 'carer' at all. Because of the ambiguity, family caregivers often assume a subservient role to that of the patient and ignore or deny their own needs for emotional support. Their relationship with health professionals is often limited to discussions of care and management of the ill person, rather than their own needs. In addition they often act as co-ordinators of information between health professionals. Family caregivers seek emotional and practical help from other family members first and foremost, and friends and neighbours generally in the absence of close family support.
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Published date: 2000
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Local EPrints ID: 464274
URI: http://eprints.soton.ac.uk/id/eprint/464274
PURE UUID: ebdf59e1-4bb0-41a6-96c2-bb91df9b3e92
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Date deposited: 04 Jul 2022 21:52
Last modified: 16 Mar 2024 19:22
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Author:
Paula Caroline Smith
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