What are the Care Needs for People with Motor Neurone Disease and How Can Occupational Therapists Respond to Meet These Needs?

2007 ◽  
Vol 70 (1) ◽  
pp. 32-34 ◽  
Author(s):  
Geraldine Foley
Keyword(s):  
Occupational Therapists ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Needs

scholarly journals Living with MND: An evaluation of care pathways available to adults with, and the families or carers of, adults with Motor Neurone Disease in Scotland

2021 ◽  
Author(s):  
Jo Ferrie ◽  
Phillippa Wiseman ◽  
Nick Watson
Keyword(s):  
Social Care ◽  
Informed Choice ◽  
Vital Role ◽  
Motor Neurone ◽  
The Body ◽  
Motor Neurone Disease ◽  
Specialist Care ◽  
Care Needs ◽  
Care And Support ◽  
General Wards

Main Findings Motor Neurone Disease (MND) is a progressive condition that damages motor neurones, the cells that control voluntary muscle activity, in both the spinal cord and the brain. It can cause difficulty in walking and movement, talking, swallowing and breathing and many muscles in the body can become affected. To find out what it is like to live with MND from the perspective of those with the condition we carried out a longitudinal study in which we interviewed 40 people with MND and their partners a number of times over a two year period. We found that:•Control, or more particularly the lack of it was the overarching theme that occurred throughout the interviews. People wanted to be consulted, informed and involved in decisions about their health and their social care and where this happened people were more likely to report satisfaction with the service. •The diagnosis of MND is a long and protracted process, one that was for many a very distressing experience. 45% of those we spoke to took over 12 months for a diagnosis, 19% over 18 months. Participants had difficulty getting professionals to take their symptoms seriously and once they entered the neurology system many people experienced delays and often the diagnosis was not confirmed by a neurologist. •Physical access to hospitals was in some cases difficult. Car parking and the location of the clinic often made it hard for people to get to a hospital appointment.•Health professionals had an important role. Good professionals were those who took time to create a sense of teamwork with the person with MND and their family. This was less likely to happen with hospital consultants and where this did not people felt insecure and not listened to. There was also some evidence of poor communication between professionals and medical notes were often not shared between different professionals. Where people accessed general wards they were rarely treated well.•Informal carers provided much of the social care and support for those with MND, with spouses meeting most of the need. Whilst many people were happy with this arrangement meeting the need placed a great deal of strain on the families. Many people did not want to rely on care supplied by outside agencies as they did not trust the quality or the reliability of the care and neither did they want their home overrun with people.•Housing adaptations and the provision of aids to daily living were for many a great cause of stress and strain and many people felt that they were not involved in the decision making process, felt out of control and unable to influence the situation. The rapidly progressive nature of MND can exacerbate this problem. •Social Care and support provided by local authorities was very heavily criticised There were inconsistencies between services, people felt excluded from decisions made about their care and their care needs and people did not have access to the necessary information to make an informed choice about which services to access.•Specialist Care Nurses (SCN) played a vital role in the care and support of those with MND. Not only do they provide help and support directly they also help to act as a champion for the family and coordinate services and service provision. This service is however under great strain and there are a significant number of people for whom this service is not working because the service was too stretched and the resources were not available to allow the SCN to meet their needs.

Distribution of Motor Neurone Disease Patients in Occupational Therapy Departments

1986 ◽  
Vol 49 (8) ◽  
pp. 260-262 ◽  
Author(s):  
Diana Langford Jones ◽  
R S Ramaiah
Keyword(s):  
Occupational Therapy ◽  
Occupational Therapists ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Community Based ◽  
Number Of Patients ◽  
Community Based Services

In a study to ascertain the distribution of motor neurone disease patients in occupational therapy departments, it was found that care takes place in a variety of settings. Although occupational therapists based in the specialist units were seeing a comparatively larger number of patients, care was also provided in the nonspecialist units as well as in the community-based services. It is suggested that this finding illustrates the need for training occupational therapists in the management of motor neurone disease patients.

scholarly journals The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

2020 ◽  
Vol 34 (6) ◽  
pp. 708-730 ◽  
Author(s):  
Kate Flemming ◽  
Victoria Turner ◽  
Samantha Bolsher ◽  
Bill Hulme ◽  
Elizabeth McHugh ◽  
...  
Keyword(s):  
Systematic Review ◽  
Qualitative Research ◽  
Palliative Care ◽  
Social Science Citation Index ◽  
Healthcare Services ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Needs ◽  
Disease Trajectory ◽  
Informal Carers

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.

Occupational Exposure to Electric Shocks and Extremely Low-Frequency Magnetic Fields and Motor Neurone Disease

2020 ◽  
Author(s):  
Grace X Chen ◽  
Andrea’t Mannetje ◽  
Jeroen Douwes ◽  
Leonard H Berg ◽  
Neil Pearce ◽  
...  
Keyword(s):  
Occupational Exposure ◽  
Magnetic Fields ◽  
Low Frequency ◽  
Population Based ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Cumulative Exposure ◽  
Spine Injury ◽  
Extremely Low Frequency ◽  
Electric Shocks

Abstract In a New Zealand population-based case-control study we assessed associations with occupational exposure to electric shocks, extremely low-frequency magnetic fields (ELF-MF) and motor neurone disease using job-exposure matrices to assess exposure. Participants were recruited between 2013 and 2016. Associations with ever/never, duration, and cumulative exposure were assessed using logistic regression adjusted for age, sex, ethnicity, socioeconomic status, education, smoking, alcohol consumption, sports, head or spine injury and solvents, and mutually adjusted for the other exposure. All analyses were repeated stratified by sex. An elevated risk was observed for having ever worked in a job with potential for electric shocks (odds ratio (OR)=1.35, 95% confidence interval (CI): 0.98, 1.86), with the strongest association for the highest level of exposure (OR=2.01, 95%CI: 1.31, 3.09). Analysis by duration suggested a non-linear association: risk was increased for both short-duration (<3 years) (OR= 4.69, 95%CI: 2.25, 9.77) and long-duration in a job with high level of electric shock exposure (>24 years; OR=1.88; 95%CI: 1.05, 3.36), with less pronounced associations for intermediate durations. No association with ELF-MF was found. Our findings provide support for an association between occupational exposure to electric shocks and motor neurone disease but did not show associations with exposure to work-related ELF-MF.

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