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A monster that lives in our lives: experiences of caregivers of people with motor neuron disease and identifying avenues for support

Hennessy Anderson, Nicole, Gluyas, Cathy, Mathers, Susan, Hudson, Peter and Ugalde, Anna 2016, A monster that lives in our lives: experiences of caregivers of people with motor neuron disease and identifying avenues for support, BMJ supportive & palliative care, Online first, pp. 1-7, doi: 10.1136/bmjspcare-2015-001057.

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Title A monster that lives in our lives: experiences of caregivers of people with motor neuron disease and identifying avenues for support
Author(s) Hennessy Anderson, Nicole
Gluyas, Cathy
Mathers, Susan
Hudson, Peter
Ugalde, AnnaORCID iD for Ugalde, Anna orcid.org/0000-0002-2473-8435
Journal name BMJ supportive & palliative care
Season Online first
Start page 1
End page 7
Total pages 7
Publisher BMJ Publishing
Place of publication London, Eng.
Publication date 2016
ISSN 2045-4368
Keyword(s) amyotrophic lateral sclerosis
burden
carers
motor neuron disease
qualitative
Summary BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
Language eng
DOI 10.1136/bmjspcare-2015-001057
Field of Research 111099 Nursing not elsewhere classified
Socio Economic Objective 920210 Nursing
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2016, BMJ Publishing
Persistent URL http://hdl.handle.net/10536/DRO/DU:30083396

Document type: Journal Article
Collection: School of Nursing and Midwifery
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Created: Wed, 11 May 2016, 13:49:18 EST

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