'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia

This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then...

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Main Authors: Keesing, Sharon, Rosenwax, Lorna, McNamara, Beverley
Format: Journal Article
Published: Blackwell Publishing 2011
Subjects:
Online Access:http://hdl.handle.net/20.500.11937/38897
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author Keesing, Sharon
Rosenwax, Lorna
McNamara, Beverley
author_facet Keesing, Sharon
Rosenwax, Lorna
McNamara, Beverley
author_sort Keesing, Sharon
building Curtin Institutional Repository
collection Online Access
description This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care.Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia.
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spelling curtin-20.500.11937-388972017-09-13T16:05:51Z 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia Keesing, Sharon Rosenwax, Lorna McNamara, Beverley occupation end of life care qualitative research health carers This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care.Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia. 2011 Journal Article http://hdl.handle.net/20.500.11937/38897 10.1111/j.1365-2524.2011.01005.x Blackwell Publishing unknown
spellingShingle occupation
end of life care
qualitative research
health
carers
Keesing, Sharon
Rosenwax, Lorna
McNamara, Beverley
'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia
title 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia
title_full 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia
title_fullStr 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia
title_full_unstemmed 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia
title_short 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia
title_sort 'doubly deprived': a post-death qualitative study of primary carers of people who died in western australia
topic occupation
end of life care
qualitative research
health
carers
url http://hdl.handle.net/20.500.11937/38897