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The personal experience of partners of individuals with motor neuron disease

The personal experience of partners of individuals with motor neuron disease
The personal experience of partners of individuals with motor neuron disease
Most research on partners’ experiences of living with a person with MND is questionnaire-based with no qualitative study focusing on the period between diagnosis and end-of-life care. This study aimed to provide an in-depth qualitative exploration of the experience of living with, and caring for, a partner with MND.
Semi-structured interviews were conducted with eight individuals, and transcripts analysed from an interpretative phenomenological perspective. Two main themes were derived. ‘Impact on life’ included having concern for partner's safety, having social restrictions, being continually tired, struggling with anger and frustration, loss of intimacy and uncertainty around the future; while ‘Adjusting to the situation’ included trying to be strong, retaining a sense of normality, appreciation of specialist services, adopting a problem-solving approach, living day to day and ability to remain positive. In conclusion, experiences of stress and loss are illustrated in this sample of partners of those with MND, and it is suggested both these aspects should be integrated into understanding of carers’ experiences. Carers appear to inhibit their grief in order to appear strong. Greater understanding of the consequences of this would help in providing appropriate emotional support.
2167-8421
39-43
Oyebode, Jan R.
efdd727b-5897-4350-880f-5f95fbecc909
Smith, Hayley-Jane
33ace1f5-381d-4636-b1fd-0e8410beed6b
Morrison, Karen
f00890f0-2fde-4dbd-a73b-7422e1b0ede8
Oyebode, Jan R.
efdd727b-5897-4350-880f-5f95fbecc909
Smith, Hayley-Jane
33ace1f5-381d-4636-b1fd-0e8410beed6b
Morrison, Karen
f00890f0-2fde-4dbd-a73b-7422e1b0ede8

Oyebode, Jan R., Smith, Hayley-Jane and Morrison, Karen (2013) The personal experience of partners of individuals with motor neuron disease. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 14 (1), 39-43. (doi:10.3109/17482968.2012.719236).

Record type: Article

Abstract

Most research on partners’ experiences of living with a person with MND is questionnaire-based with no qualitative study focusing on the period between diagnosis and end-of-life care. This study aimed to provide an in-depth qualitative exploration of the experience of living with, and caring for, a partner with MND.
Semi-structured interviews were conducted with eight individuals, and transcripts analysed from an interpretative phenomenological perspective. Two main themes were derived. ‘Impact on life’ included having concern for partner's safety, having social restrictions, being continually tired, struggling with anger and frustration, loss of intimacy and uncertainty around the future; while ‘Adjusting to the situation’ included trying to be strong, retaining a sense of normality, appreciation of specialist services, adopting a problem-solving approach, living day to day and ability to remain positive. In conclusion, experiences of stress and loss are illustrated in this sample of partners of those with MND, and it is suggested both these aspects should be integrated into understanding of carers’ experiences. Carers appear to inhibit their grief in order to appear strong. Greater understanding of the consequences of this would help in providing appropriate emotional support.

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More information

Accepted/In Press date: 5 August 2012
e-pub ahead of print date: 14 September 2012
Published date: January 2013
Organisations: Medical Education

Identifiers

Local EPrints ID: 398478
URI: http://eprints.soton.ac.uk/id/eprint/398478
ISSN: 2167-8421
PURE UUID: e02f1188-17a5-4a06-9eb0-04f1790be712
ORCID for Karen Morrison: ORCID iD orcid.org/0000-0003-0216-5717

Catalogue record

Date deposited: 25 Jul 2016 14:21
Last modified: 22 Oct 2019 00:32

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Contributors

Author: Jan R. Oyebode
Author: Hayley-Jane Smith
Author: Karen Morrison ORCID iD

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