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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

Published Date: 3.12.2019

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Theme: Service systems

Sub-theme: Carer support services

Motor Neurone Disease Carer support Lived experience Peer-reviewed journal article Thematic analysis Qualitative study

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


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Theme: Service systems

Sub-theme: Carer support services

View Publication Motor Neurone Disease Carer support Lived experience Peer-reviewed journal article Thematic analysis Qualitative study

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

“A monster that lives in our lives”

Experiences of caregivers of people with motor neuron disease and identifying avenues for support

Published Date: 3.12.2019

  • Author/ Authors

    Nicole Hennessy Anderson, Cathy Gluyas, Susan Mathers, Peter Hudson, Anna Ugalde

  • Suggested citation (APA 7th edition)

    Anderson, Gluyas, C., Mathers, S., Hudson, P., & Ugalde, A. (2019). “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, 9(4), e27–e27. https://doi.org/10.1136/bmjspcare-2015-001057

Long Summary

This study aimed to inform interventions for those who care for someone with motor neuron disease by gaining insight into the lived experience of these carers. Concluding that 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.

    Key Messages for Carers


  • This study recognises that there remains limited research on how to support carers of those with motor neuron disease
  • Provides insight into the lived experience of caring for an individual with motor neuron disease

  • Key Messages for Policy Makers


  • Revealed that there is a distinct need for greater support for those who care for someone with motor neurone disease
  • Support and guidance were particularly needed regarding experiences of loss and adapting to changeable caregiving duties
  • Revealed that greater research should be conducted on therapeutic interventions targeting experiences of loss and change

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.