55 Palliative care for people with motor neurone disease. An integrative literature review

2018 ◽  
Vol 8 (3) ◽  
pp. 381.1-381
Author(s):  
Lorna Hollowood
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Ethical Decision Making ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Disease Assessment ◽  
List Type ◽  
Care Givers ◽  
Advance Care ◽  
Area Of Concern

Motor neurone disease (MND) is a rare progressive neurodegenerative disease which results in muscle weakness reduced mobility dysphagia and speech and breathing difficulties with no curative treatment or remission where 50% of patients die within three years of their first symptom and many dying within a year of diagnosis (Whitehead et al. 2012 Wood-Allum 2014). Access to palliative care for people with motor neurone disease (MND) is an area of concern for the person with the condition as well as the carers supporting them (NICE 2016). This literature review examines the specific challenges in palliative care for people with MND and their carers.A systematic search was undertaken of the literature yielding 534 articles. This was reduced by inclusion and exclusion criteria to 43 articles which were selected for critical appraisal for their relevance to the topic using MacKenzie et al’s (2010) quality review tool resulting. 16 articles were themed using Thomas and Harden’s (2008) thematic analysis approach.Four themes emerged from the literature: the specific needs of carers of people with MND; Service provision; hope and depression and ethical decision-making.Despite a lack of quantifiable data relating to specialist palliative care to improve palliative outcomes in people with MND the literature shows that MND patents and their care-givers have a great need for integrated services which are equipped to deal with their very specific needs. The management of hope and depression should form an integral part of the palliative care provision. Advance care planning offers a framework to support communication between services and families. The symptoms experienced at end of life require specialist skills to manage and needs the support of a multidisciplinary team.References. Whitehead B, O’Brien MR, Jack BA, Mitchell D. Experiences of dying death and bereavement in motor neurone disease: a qualitative study.Palliative Medicine [online] 2012;26(4):368–78. Available from: MEDLINE. Wood-Allum CA. Unanswered questions and barriers to research in the palliative care of motor neurone disease patients. Journal of Palliative Care [online] 2014;30(4):302–306. Available from: Academic Search Complete. NICE. Motor neurone disease: assessment and management NICE guidelines [NG42] [online]2016. Available from: https://www.nice.org.uk/guidance/cg105

Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

2011 ◽  
Vol 26 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Bridget Whitehead ◽  
Mary R O’Brien ◽  
Barbara A Jack ◽  
Douglas Mitchell
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Health Professionals ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Planning ◽  
Family Carers ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

scholarly journals A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

2012 ◽  
Vol 27 (5) ◽  
pp. 437-446 ◽  
Author(s):  
Samar M Aoun ◽  
Brenda Bentley ◽  
Laura Funk ◽  
Chris Toye ◽  
Gunn Grande ◽  
...  
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Motor Neurone ◽  
Motor Neurone Disease

Motor neurone disease-associated neck pain misdiagnosed as cervical spondylosis: A case report and literature review

2018 ◽  
Vol 55 ◽  
pp. 112-115 ◽  
Author(s):  
Xiaoyin Lai ◽  
Xiaju Gu ◽  
Xuelian Yang ◽  
Jialan Sun ◽  
Mei Jiang ◽  
...  
Keyword(s):  
Case Report ◽  
Literature Review ◽  
Neck Pain ◽  
Cervical Spondylosis ◽  
Motor Neurone ◽  
Motor Neurone Disease

PONM10 Motor neurone disease. Experience and expectations of patients and care givers

2010 ◽  
Vol 81 (11) ◽  
pp. e63-e63
Author(s):  
M. T. Gutiez ◽  
B. Nevin ◽  
J. Stewart ◽  
L. Jarrett ◽  
S. J. M. Weatherby
Keyword(s):  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Givers ◽  
Disease Experience

14 Enabling tailored and coordinated support for family carers of people with motor neurone disease through adaptation of a carer support needs assessment tool (CSNAT) intervention

2018 ◽  
Vol 8 (3) ◽  
pp. 365.1-365 ◽  
Author(s):  
Gail Ewing ◽  
Sarah Croke ◽  
Christine Rowland ◽  
Gunn Grande
Keyword(s):  
Needs Assessment ◽  
Assessment Tool ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Support Needs ◽  
List Type ◽  
Family Carers ◽  
Carer Support ◽  
Main Support ◽  
Stage 1

IntroductionFamily carers provide vital support for people with Motor Neurone Disease (MND) but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this.AimTo adapt an existing carer support needs assessment tool (CSNAT) intervention to support the needs and situation of family carers of people with MND.MethodsStages:Focus groups and interviews with 33 carers (14 bereaved 19 current carers) to capture support needs key points of change during patient’s illness and main support services.Workshops with HCPs (N=17 recruited to date) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support.ResultsStage 1: Carers’ experience was one of dealing with a devastating diagnosis a constantly changing situation with heavy dependence on them as carers and with little consideration of their separate support needs. Carers’ support needs mainly mapped onto CSNAT domains but MND carers may experience relationship issues warranting further consideration. Stage 2 will integrate HCP and carers’ views on when where how and by whom MND carer assessment and support should best be provided.ConclusionsFindings to be presented from Stages 1 and 2 will provide insights into how MND carers want to be assessed and supported. This will form the basis for an intervention to be tested in a future Stage 3 feasibility study.FunderMarie Curie Research Fund/Motor Neurone Disease Association

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