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Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation

King, Susan, Duke, Maxine and O'Connor, Barrie A. 2009, Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation, Journal of clinical nursing, vol. 18, no. 5, pp. 745-754, doi: 10.1111/j.1365-2702.2008.02671.x.

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Title Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation
Author(s) King, Susan
Duke, MaxineORCID iD for Duke, Maxine orcid.org/0000-0003-1567-3956
O'Connor, Barrie A.
Journal name Journal of clinical nursing
Volume number 18
Issue number 5
Start page 745
End page 754
Total pages 10
Publisher Wiley - Blackwell
Place of publication Oxford, England
Publication date 2009-03
ISSN 0962-1067
1365-2702
Keyword(s) adaptation
chronic illness
decision-making
grounded theory
interviews
nursing
Summary Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease.

Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease.

Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study.

Methods. Data collection involved in-depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2® software was used to manage the data and modelling used to illustrate concepts.

Findings. Participants used a cyclic, decision-making pattern about 'ongoing change and adaptation' as they lived with the disease. This pattern formed the basis of the model that is presented in this paper.

Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well-being in the face of change.

Relevance to clinical practice. The 'ongoing change and adaptation' model is a framework that can guide practitioners to understand the decision-making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person-centred. The model may also have relevance for people with other life limiting diseases and their care.
Notes Published Online: 12 Feb 2009
Language eng
DOI 10.1111/j.1365-2702.2008.02671.x
Field of Research 111703 Care for Disabled
Socio Economic Objective 920403 Disability and Functional Capacity
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2009, Blackwell Publishing Ltd,
Persistent URL http://hdl.handle.net/10536/DRO/DU:30019833

Document type: Journal Article
Collection: School of Nursing and Midwifery
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Created: Wed, 23 Sep 2009, 13:12:40 EST by Deborah Wittahatchy

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