scholarly journals Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?

2012 ◽  
Vol 11 (1) ◽  
Author(s):  
Brenda Bentley ◽  
Samar M Aoun ◽  
Moira O’Connor ◽  
Lauren J Breen ◽  
Harvey Max Chochinov
Keyword(s):  
End Of Life ◽  
Life Experience ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Family Carers ◽  
Dignity Therapy

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

2019 ◽  
Vol 25 (6) ◽  
pp. 284-292 ◽  
Author(s):  
Denise Andrea Harris ◽  
Kirsten Jack ◽  
Christopher Wibberley
Keyword(s):  
End Of Life ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Power Of Attorney ◽  
Loved One ◽  
Lived Space ◽  
Need Support ◽  
Life Trajectory ◽  
Vicarious Experiences ◽  
Lived Time

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.

Extending choice over where patients with motor neurone disease receive end-of-life care

2006 ◽  
Vol 2 (10) ◽  
pp. 493-498 ◽  
Author(s):  
Les Storey ◽  
Pauline Callagher ◽  
Douglas Mitchell ◽  
Robert Addison-Jones ◽  
Wendy Bennett
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Life Care

scholarly journals Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey

2017 ◽  
Vol 372 ◽  
pp. 144-151 ◽  
Author(s):  
Samar M Aoun ◽  
Lauren J Breen ◽  
David Oliver ◽  
Robert D Henderson ◽  
Robert Edis ◽  
...  
Keyword(s):  
National Survey ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Family Carers

Effect of Dignity Therapy on Distress and End-of-Life Experience in Terminally Ill Patients: A Randomised Controlled Trial

2013 ◽  
Vol 11 (4) ◽  
pp. 576-587 ◽  
Author(s):  
Harvey Max Chochinov ◽  
Linda J Kristjanson ◽  
William Breitbart ◽  
Susan McClement ◽  
Thomas F Hack ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
End Of Life ◽  
Life Experience ◽  
Controlled Trial ◽  
Terminally Ill ◽  
Terminally Ill Patients ◽  
Dignity Therapy ◽  
Randomised Controlled

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

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.

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