scholarly journals The development of the UK National Institute of Health and Care Excellence evidence-based clinical guidelines on motor neurone disease

2017 ◽  
Vol 18 (5-6) ◽  
pp. 313-323 ◽  
Author(s):  
David Oliver ◽  
Aleksandar Radunovic ◽  
Alexander Allen ◽  
Christopher McDermott
Keyword(s):  
Clinical Guidelines ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Evidence Based ◽  
The Uk

The Ethical Arguments Concerning the Artificial Ventilation of Patients With Motor Neurone Disease

1996 ◽  
Vol 3 (4) ◽  
pp. 317-328 ◽  
Author(s):  
Michele Anne Kent
Keyword(s):  
Caregiver Burden ◽  
Artificial Ventilation ◽  
Ethical Dilemmas ◽  
Informed Choice ◽  
Motor Neurone ◽  
Advanced Technology ◽  
Motor Neurone Disease ◽  
Accurate Data ◽  
First Order ◽  
The Uk

This paper focuses on the ethical dilemmas created by advanced technology that would allow patients with motor neurone disease to be sustained by artificial ventilation. The author attempts to support the patient's right to informed choice, arguing from the perspective of autonomy as a first order principle. The counter arguments of caregiver burden and financial restraints are analysed. In the UK, where active euthanasia is not legalized, the dilemma of commencing ventilation is seen to be outweighed by the problems of withdrawing this treatment. The lack of accurate data and protocols that would clarify the current situation is emphasized and the conclusion takes the form of a recommendation for further research.

scholarly journals Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison
Keyword(s):  
Emotional Distress ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Psychological Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Qualitative Interview Study ◽  
The Uk ◽  
Broad Understanding

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.

The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease

2019 ◽  
Vol 15 (3) ◽  
pp. 114-124
Author(s):  
Mary R O'Brien ◽  
Barbara A Jack ◽  
Karen Kinloch ◽  
Oliver Clabburn ◽  
Katherine Knighting
Keyword(s):  
Online Survey ◽  
Telephone Interview ◽  
Motor Neurone ◽  
Screening Tools ◽  
Motor Neurone Disease ◽  
Evidence Based ◽  
Family Carers ◽  
Change Over Time ◽  
Need For Support ◽  
Over Time

Background: Burden and distress among family carers of people living with motor neurone disease (MND) are reported widely. Evidence-based screening tools to help identify these carers' needs and plan appropriate support are urgently needed. Aim: To pilot the Carers' Alert Thermometer (CAT), a triage tool developed to identify carers' needs, with family carers of people living with MND to determine its usefulness in identifying their need for support. Methods: Training workshops with MND Association visitors (AVs) and staff in southwest and northwest England, followed by implementation of the CAT. A self-completed online survey and semi-structured telephone interview evaluated use of the CAT. Findings: Sixteen participants completed the online survey with 11 volunteering to be interviewed. The CAT has potential to map change over time, help to focus on carers' needs and improve communication with carers. Conclusion: The CAT provides a structure enabling AVs to engage in a meaningful process with family carers to identify and discuss their needs.

scholarly journals Brief Behavioural Activation (Brief BA) for Adolescent Depression: A Pilot Study

2017 ◽  
Vol 46 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Laura Pass ◽  
Carl W. Lejuez ◽  
Shirley Reynolds
Keyword(s):  
Mental Health ◽  
Pilot Study ◽  
Young People ◽  
Adolescent Depression ◽  
Psychological Intervention ◽  
Clinical Effectiveness ◽  
Evidence Based ◽  
Behavioural Activation ◽  
Evidence Based Treatments ◽  
The Uk

Background: Depression in adolescence is a common and serious mental health problem. In the UK, access to evidence-based psychological treatments is limited, and training and employing therapists to deliver these is expensive. Brief behavioural activation for the treatment of depression (BATD) has great potential for use with adolescents and to be delivered by a range of healthcare professionals, but there is limited empirical investigation with this group. Aims: To adapt BATD for depressed adolescents (Brief BA) and conduct a pilot study to assess feasibility, acceptability and clinical effectiveness. Method: Twenty depressed adolescents referred to the local NHS Child and Adolescent Mental Health service (CAMHs) were offered eight sessions of Brief BA followed by a review around one month later. Self- and parent-reported routine outcome measures (ROMs) were collected at every session. Results: Nineteen of the 20 young people fully engaged with the treatment and all reported finding some aspect of Brief BA helpful. Thirteen (65%) required no further psychological intervention following Brief BA, and both young people and parents reported high levels of acceptability and satisfaction with the approach. The pre–post effect size of Brief BA treatment was large. Conclusions: Brief BA is a promising innovation in the treatment of adolescent depression. This approach requires further evaluation to establish effectiveness and cost effectiveness compared with existing evidence-based treatments for adolescent depression. Other questions concern the effectiveness of delivery in other settings and when delivered by a range of professionals.

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.

Men's perception and understanding of male-factor infertility in the UK

2021 ◽  
Vol 30 (9) ◽  
pp. S8-S16
Author(s):  
Eleanor L Stevenson ◽  
Cheng Ching-Yu ◽  
Chang Chia-Hao ◽  
Kevin R McEleny
Keyword(s):  
Public Health ◽  
Emotional Support ◽  
Health Professionals ◽  
Male Fertility ◽  
Public Knowledge ◽  
Evidence Based ◽  
Male Factor Infertility ◽  
Male Factor ◽  
The Public ◽  
The Uk

Male-factor infertility is a common but stigmatised issue, and men often do not receive the emotional support and the information they need. This study sought to understand awareness of male fertility issues compared to female fertility among the UK general male public, and also what were perceived as being the optimum methods for providing support for affected men, emotionally and through information. Men feel that male infertility is not discussed by the public as much as female infertility. Lifestyle issues that affect male fertility are not well understood, and men affected by infertility desire more support, including online, from health professionals and through peer support. Health professionals, including those in public health, could offer evidence-based programmes to reduce stigma and increase public knowledge about infertility, as well as offer emotional support to men with infertility problems.

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