ArticleBMJ open2021
Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
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Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 41 citations in OpenAlex.
- The Emotional Experiences of Healthcare Professionals Working in Amyotrophic Lateral Sclerosis: A Systematic Review.Muscle & nerve · 2026Pooled it
- Oral Health Care Services, Barriers and Enablers to Maintaining Good Oral Health in Motor Neurone Disease: A Scoping Review.Community dentistry and oral epidemiology · 2026Article
- Article
- Exploring the use of narrative-based approaches in individuals with amyotrophic lateral sclerosis: A narrative review.Palliative & supportive care · 2026Review
- Paid homecare worker support for people living with motor neurone disease: A secondary analysis of people living with motor neurone disease and family member perspectives.Palliative care and social practice · 2026Article
- RES-MND: Motor neuron disease detection using Res4Net-convolutional block attention module.Turkish journal of medical sciences · 2026Article
- Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.Palliative care and social practice · 2026Article
- Does carer psychological inflexibility moderate the relationship between motor neurone disease symptomatology and carer anticipatory grief emotions?Journal of health psychology · 2025Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Lived Experiences of Physiotherapists in Caring for People with Advanced Amyotrophic Lateral Sclerosis in Portugal: A Phenomenological Study.Behavioral sciences (Basel, Switzerland) · 2025Article
- What is the current state of the research literature examining the impact of the motor neurone disease journey on the couple's relationship? A scoping review.Palliative & supportive care · 2025Article
- Working with people living with motor neurone disease and the impact on professionals' emotional and psychological well-being: A scoping review.Palliative medicine · 2025Article
- Non-Pharmacological Interventions for Caregivers of People with Motor Neurone Disease: A Scoping Review of Psychosocial Outcomes.Brain sciences · 2025Review
- Making Video Games More Inclusive for People Living With Motor Neuron Disease: Scoping Review.JMIR rehabilitation and assistive technologies · 2024Article
- Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Article
- Cost-effectiveness of acceptance and commitment therapy for people living with motor neuron disease, and their health-related quality of life.European journal of neurology · 2024Article
- 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.BMC neurology · 2024Article
- Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups.Behavioral sciences (Basel, Switzerland) · 2023Article
- Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study.Pilot and feasibility studies · 2023Article
- Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions.Brain sciences · 2023Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
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 ANALYSIS: Data 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.