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Planning for end of life care within lay-led chronic illness self-management training: the significance of 'death awareness' and biographical context in participant accounts

Sanders, Caroline, Rogers, Anne, Gately, Claire and Kennedy, Anne (2008) Planning for end of life care within lay-led chronic illness self-management training: the significance of 'death awareness' and biographical context in participant accounts Social Science & Medicine, 66, (4), pp. 982-993. (doi:10.1016/j.socscimed.2007.11.003).

Record type: Article

Abstract

UK health policy dictates that Advance Care Planning (ACP), including the use of living wills, promotes choice and quality regarding end of life care for those with chronic and life-threatening conditions and it has been incorporated in self-management training. This paper reports a qualitative evaluation based on in-depth interviews with 31 respondents who had completed a UK based lay-led self-management course (The Expert Patients Programme), and 12 respondents who had completed the same course adapted for people who are HIV positive. We draw upon previous social research on ‘death awareness’ and the biographical context of illness experience and management in examining the impact of incorporating this subject within a self-management intervention. The analysis demonstrates that many participants were unprepared to face issues raised in the session with material represented as disrupting some aspects of illness adaptation and existing views about death and dying. Positioning educational material on death and dying alongside that on ‘positive’ self-management of illness highlights the complexities and sensitivities of planning for end of life care with implications for future educational interventions of this type.

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e-pub ahead of print date: 26 December 2007
Published date: February 2008
Keywords: uk, chronic illness, biographical disruption, self-management training, advance care planning, death and dying, expert patients, hiv
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 344362
URI: http://eprints.soton.ac.uk/id/eprint/344362
ISSN: 0277-9536
PURE UUID: 1f2d8425-105f-4c53-b5bf-657ab56c80db
ORCID for Anne Kennedy: ORCID iD orcid.org/0000-0003-4570-9104

Catalogue record

Date deposited: 22 Oct 2012 10:29
Last modified: 18 Jul 2017 05:16

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Contributors

Author: Caroline Sanders
Author: Anne Rogers
Author: Claire Gately
Author: Anne Kennedy ORCID iD

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