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

Harris, Denise Andrea, Jack, Kirsten ORCID: https://orcid.org/0000-0002-8560-9418 and Wibberley, Christopher ORCID: 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:	Error parsing XML in render_xhtml_field: :1: parser error : attributes construct error <a href="https://www.magonlinelibrary.com/doi/full/10.12968/ijpn.2019.25.6.284." ^ :1: parser error : Couldn't find end of Start Tag a line 1 <a href="https://www.magonlinelibrary.com/doi/full/10.12968/ijpn.2019.25.6.284." ^ :1: parser error : Opening and ending tag mismatch: fragment line 1 and a 4."">https://www.magonlinelibrary.com/doi/full/10.12968/ijpn.2019.25.6.284."</a> ^ :1: parser error : Extra content at the end of the document 4."">https://www.magonlinelibrary.com/doi/full/10.12968/ijpn.2019.25.6.284."</a> ^
Divisions:	Faculties > Health and Education Research Centres > Health, Psychology and Communities
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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