The University of Southampton
University of Southampton Institutional Repository

Living with a terminal illness: patients' priorities

Living with a terminal illness: patients' priorities
Living with a terminal illness: patients' priorities
BACKGROUND: Our understanding of terminal illness and its consequences has been predominantly based on models derived from expert definition, rather than the patient's perspective. More recently, quality of life tools have been developed to enable patient choice in responses. However, an even broader approach may be needed to help identify goals for care for patients who are terminally ill.
AIM: The aim of this paper is to report on an exploratory, qualitative study exploring what people living with terminal illness considered were the areas of priority in their lives.
METHODS: Ten people living with terminal cancer were interviewed. Analysis of the interviews incorporated principles of narrative analysis and grounded theory.
FINDINGS: Over 30 categories were identified and collated into five inter-related themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge) encompassing the issues of importance to all participants. Each theme focused on 'life and living' in relation to life as it was or would be without illness. Practical issues of daily living and the opportunity to address philosophical issues around the meaning of life emerged as important areas. The central theme, 'taking charge', concerned with people's levels of life engagement, was integrally connected to all other themes.
CONCLUSIONS: The findings suggest that the way in which health professionals manage patients' involvement in matters such as symptom relief can impact on existential areas of concern. Understanding patients' perspectives in relation to each theme may assist health professionals to develop management strategies appropriate to their needs. The findings challenge some aspects of traditional 'expert-defined' outcome measures. As this was an exploratory study, further work is needed to test and develop the model presented.
0309-2402
611 - 620
Carter, Helen
b76a9d1c-7b0a-4127-85cf-8edf90b1e074
McLeod, Rod
9e404549-b06b-4170-938b-50529564c796
Brander, Penny
cd3263db-b6da-4e09-b8d7-a42904844c30
McPherson, Kath
dc901431-2119-42df-9400-852e4cb46d75
Carter, Helen
b76a9d1c-7b0a-4127-85cf-8edf90b1e074
McLeod, Rod
9e404549-b06b-4170-938b-50529564c796
Brander, Penny
cd3263db-b6da-4e09-b8d7-a42904844c30
McPherson, Kath
dc901431-2119-42df-9400-852e4cb46d75

Carter, Helen, McLeod, Rod, Brander, Penny and McPherson, Kath (2004) Living with a terminal illness: patients' priorities. Journal of Advanced Nursing, 45 (6), 611 - 620. (doi:10.1046/j.1365-2648.2003.02953.x).

Record type: Article

Abstract

BACKGROUND: Our understanding of terminal illness and its consequences has been predominantly based on models derived from expert definition, rather than the patient's perspective. More recently, quality of life tools have been developed to enable patient choice in responses. However, an even broader approach may be needed to help identify goals for care for patients who are terminally ill.
AIM: The aim of this paper is to report on an exploratory, qualitative study exploring what people living with terminal illness considered were the areas of priority in their lives.
METHODS: Ten people living with terminal cancer were interviewed. Analysis of the interviews incorporated principles of narrative analysis and grounded theory.
FINDINGS: Over 30 categories were identified and collated into five inter-related themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge) encompassing the issues of importance to all participants. Each theme focused on 'life and living' in relation to life as it was or would be without illness. Practical issues of daily living and the opportunity to address philosophical issues around the meaning of life emerged as important areas. The central theme, 'taking charge', concerned with people's levels of life engagement, was integrally connected to all other themes.
CONCLUSIONS: The findings suggest that the way in which health professionals manage patients' involvement in matters such as symptom relief can impact on existential areas of concern. Understanding patients' perspectives in relation to each theme may assist health professionals to develop management strategies appropriate to their needs. The findings challenge some aspects of traditional 'expert-defined' outcome measures. As this was an exploratory study, further work is needed to test and develop the model presented.

Full text not available from this repository.

More information

Published date: 1 March 2004

Identifiers

Local EPrints ID: 17850
URI: https://eprints.soton.ac.uk/id/eprint/17850
ISSN: 0309-2402
PURE UUID: 6c414396-9ebf-4b0d-ba63-a50288e49f59

Catalogue record

Date deposited: 16 Nov 2005
Last modified: 17 Jul 2017 16:37

Export record

Altmetrics

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of https://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×