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Experiences of bereaved carers: insights from the literature

Cavaye, Joyce and Watts, Jacqueline H. (2016). Experiences of bereaved carers: insights from the literature. European Journal of Palliative Care, 23(4) pp. 200–203.

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Abstract

Although unpaid carers provide the majority of care for older, ill and disabled people in the UK, they are members of a marginalised population (Hash and Cramer, 2003: 50). Whilst caregiving is a dynamic process that changes over time, it has some key components as outlined by Stetz and Brown’s (1997) overarching term taking care and defined by them as the guiding, giving and doing for the ill person to meet his or her needs. This encompasses a very wide range of tasks and processes including what Brown and Stetz (1999: 191) call ‘midwifing the death’ of the person being cared for.

Conceptualised as a ‘career’ (Lindgren, 1993; Aneshensel et al, 1995), caregiving comprises various phases of which the post-caregiving period is only one of many that carers experience. Lindgren (1993: 214) defines the caregiver career as the “specific period within a spouse’s life in which caregiving is the central focus”. She outlines three distinct stages of caregiving as the: encounter stage; enduring stage; and exit stage (Lindgren 1993). Aneshensel et al (1995), who consider the caregiving career to be “unplanned and unexpected”, also describe three phases comprising role acquisition, role enactment and role disengagement. Another simplistic framework developed by Ume and Evans (2011) identifies three phases as being pre-caregiving, active caregiving and post-caregiving.

Despite each author using a different term, common to the models outlined above is the identification of beginning, a discernible temporal direction and an end of caregiving. The identification of the end or post-caregiving stage is not new. It was acknowledged in the early literature (George and Gwyther, 1986) but described as the “ignored phase of caregiving careers” (Pearlin and Zarit, 1993: 155). Caregiving research in the last two decades has tended to focus on the ‘active’ phase when carers are providing care while the care recipient is still alive (Seltzer and Li, 2000). While an established body of literature has documented the experiences and needs of unpaid carers, relatively little is known about the post-caregiving period and the increasingly large group of former carers. This situation is problematic given the current policy agenda.

Item Type: Journal Item
Copyright Holders: 2016 Hayward Medical Communications
ISSN: 1352-2779
Keywords: bereavement; caregiving careers; former carers
Academic Unit/School: Faculty of Wellbeing, Education and Language Studies (WELS) > Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies (WELS)
Item ID: 45066
Depositing User: Jacqueline H. Watts
Date Deposited: 06 Jan 2016 11:06
Last Modified: 10 Jun 2019 20:33
URI: http://oro.open.ac.uk/id/eprint/45066
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