Palliative care in multiple sclerosis and motor neurone disease

2010 ◽  
Vol 71 (1) ◽  
pp. 21-25 ◽  
Author(s):  
Julia Barnes ◽  
Colin Campbell
1973 ◽  
Vol 47 (3) ◽  
pp. 397-402 ◽  
Author(s):  
Celia M. Yates ◽  
Helen Wilson ◽  
D. Davidson

2011 ◽  
Vol 26 (8) ◽  
pp. 994-1000 ◽  
Author(s):  
Ruth McConigley ◽  
Samar Aoun ◽  
Linda Kristjanson ◽  
Sue Colyer ◽  
Kathy Deas ◽  
...  

2020 ◽  
Vol 27 (1) ◽  
pp. 316-320
Author(s):  
Christopher Poppe

The concepts of hope and its absence, hopelessness, are seen as crucial in palliative care for people with motor neurone disease. A primary measure in psychological research on hopelessness in people with motor neurone disease is the Beck Hopelessness Scale. This scale can be understood as being conceptually based on the philosophical standard account of hope, which understands hope as an intentional expectancy. This essay argues that this is a misconstruction of hopelessness in palliative care. Rather, pre-intentional hope is essential for palliative care of people with motor neurone disease. Pre-intentional hope enables the formation of intentional hopes and is intrinsically relational. Finally, it is argued that the absence of pre-intentional hope should not be subjected to psychiatric diagnosis, for example, in the form of demoralization disorder.


1999 ◽  
Vol 6 (2) ◽  
pp. 187-193 ◽  
Author(s):  
Katrin Gross-Paju ◽  
M. Ööpik ◽  
S.-M. Lüüs ◽  
I. Kalbe ◽  
Ain-Elmar Kaasik

2011 ◽  
Vol 26 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Bridget Whitehead ◽  
Mary R O’Brien ◽  
Barbara A Jack ◽  
Douglas Mitchell

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.


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