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    Making her end of life her own: further reflections on supporting a loved one with motor neurone disease.

    Harris, Denise Andrea, Jack, Kirsten ORCID logoORCID: https://orcid.org/0000-0002-8560-9418 and Wibberley, Christopher ORCID logoORCID: https://orcid.org/0000-0002-2037-6588 (2019) Making her end of life her own: further reflections on supporting a loved one with motor neurone disease. International journal of palliative nursing, 25 (6). pp. 284-292. ISSN 1357-6321

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    Abstract

    BACKGROUND:People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family. AIM:This study aimed to explore the meaning of supporting a loved one with MND to die. METHODS:This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying. FINDINGS:Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying-facing it alone). CONCLUSION:Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.

    Item Type: Article
    Peer-reviewed: Yes
    Date Deposited: 13 Aug 2019 11:21
    Publisher: Mark Allen Healthcare
    Additional Information: 
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    Divisions: Faculties > Health and Education
    Subject terms: Autoethnography, Family Carers, Motor Neurone Disease, Science & Technology, Life Sciences & Biomedicine, Nursing, Autoethnography, Family carers, Motor neurone disease, FAMILY CAREGIVERS, CARE, EXPERIENCES, AUTOETHNOGRAPHY, RELATIVES, VIEWS, DEATH, Humans, Motor Neuron Disease, Death, Terminal Care, Anthropology, Cultural, Home Care Services, Autoethnography, Family carers, Motor neurone disease, Anthropology, Cultural, Death, Home Care Services, Humans, Motor Neuron Disease, Terminal Care, 1110 Nursing
    URI: https://e-space.mmu.ac.uk/id/eprint/623675
    DOI: https://doi.org/10.12968/ijpn.2019.25.6.284
    ISSN 1357-6321
    e-ISSN 2052-286X

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