Communicating psychosocial well-being in motor neurone disease to staff: results from a World Café approach

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.

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Supporting access to activities to enhance well‐being and reduce social isolation in people living with motor neurone disease

Health & Social Care in the Community ◽

10.1111/hsc.13049 ◽

2020 ◽

Vol 28 (6) ◽

pp. 2282-2289

Author(s):

Suzanne Simpson ◽

Sandra Smith ◽

Moira Furlong ◽

Janet Ireland ◽

Clarissa Giebel

Keyword(s):

Social Isolation ◽

Well Being ◽

Motor Neurone ◽

Motor Neurone Disease

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The psychological impact of motor neurone disease

Psychological Medicine ◽

10.1017/s003329170002777x ◽

1994 ◽

Vol 24 (3) ◽

pp. 625-632 ◽

Cited By ~ 69

Author(s):

K. E. Hogg ◽

L. H. Goldstein ◽

P. N. Leigh

Keyword(s):

Psychological Impact ◽

Well Being ◽

Motor Neurone ◽

Self Report ◽

Motor Neurone Disease ◽

Everyday Functioning ◽

Ways Of Coping ◽

Acceptance Of Illness ◽

Physical Symptomatology

SynopsisSelf-report measures were completed by 59 individuals with motor neurone disease (MND) in order to assess whether: (a) MND affects patients' psychological well-being and quality of life; (b) if greater affective disorder is associated with greater physical disability; (c) whether accepting the illness and ways of coping have an impact on psychological distress, and (d) if beliefs over control of their health shift as the disease progresses. Results indicated that the effects of MND on everyday functioning accounted for incidence of depression and low self-esteem. Acceptance of illness was related to severity of symptoms and was a significant factor irrespective of level of physical symptomatology. Ways of coping with the illness did not relate in any significant way to severity of symptoms. Mild physical impairments were associated with an ‘internal’ view of control over health.

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Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being

Palliative & Supportive Care ◽

10.1017/s1478951505050054 ◽

2005 ◽

Vol 3 (1) ◽

pp. 33-38 ◽

Cited By ~ 13

Author(s):

ANTHONY LOVE ◽

ANNETTE STREET ◽

ROBIN RAY ◽

ROD HARRIS ◽

ROGER LOWE

Keyword(s):

Social Support ◽

Multivariate Analyses ◽

Well Being ◽

Motor Neurone ◽

Motor Neurone Disease ◽

Support Network ◽

Social Aspects ◽

Caregiver Network ◽

Univariate Analyses ◽

Professional Intervention

Objective:To investigate social aspects of caregiving for people living with motor neurone disease (MND) and examine their relationships to carers' well-being.Methods:A questionnaire was developed to assess carers' perceptions of their social support network (the Caregiver Network Scale, CNS), including measures of sociodemographic status and general well-being (GHQ-12), and mailed to carers of people living with MND.Results:Seventy-five surveys were returned (response rate: 33%). In univariate analyses, relationships between well-being and carer age, time as caregiver, and four subscales of the CNS were found to be significant. However, multivariate analyses combining their effects revealed that stress on carer social networks was the best single contributor to predictions of carer well-being.Significance of results:Results indicate that prolonged caring for others living with MND has substantial costs for the carer in terms of loss of social support, which affects carer well-being and impacts ultimately on those living with MND. The CNS offers promise as a measure for screening at-risk carers; those who are distressed become candidates for professional intervention to help them cope better. Further research, providing validation of the scale for this task, is recommended.

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Frontotemporal dementia and mild cognitive impairment in motor neurone disease

PsycEXTRA Dataset ◽

10.1037/e578362014-031 ◽

2009 ◽

Author(s):

S. Tsermentseli

Keyword(s):

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Frontotemporal Dementia ◽

Motor Neurone ◽

Motor Neurone Disease

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Motor Neurone Disease - Systematic Multi-Arm Adaptive Randomised Trial

Case Medical Research ◽

10.31525/ct1-nct04302870 ◽

2020 ◽

Author(s):

Keyword(s):

Randomised Trial ◽

Motor Neurone ◽

Motor Neurone Disease

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

American Journal of Epidemiology ◽

10.1093/aje/kwaa214 ◽

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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