SynthesisPalliative medicine2020
The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review.
Synthesis in Palliative medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
28 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review.Death studies · 2024Pooled it
- Implementation of specialised care improves survival in patients with amyotrophic lateral sclerosis.Neurological research and practice · 2026Article
- Embedding Palliative Care Clinicians in ALS Teams Improves ALS Clinicians' Confidence in Their Patient Management and Satisfaction With Palliative Care.Muscle & nerve · 2026Article
- Article
- The Unfinished Breath: Caregiver Perceptions of Terminal Events and Gaps in Amyotrophic Lateral Sclerosis Care in India.Annals of Indian Academy of Neurology · 2026Article
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- Wishes, conflicts, and support needs of informal caregivers of patients in the palliative phase: A qualitative study.Journal of health psychology · 2026Article
- Experiences of palliative care for patients with pulmonary fibrosis: A qualitative exploration of patients and partners perspectives.PloS one · 2026Article
- Palliative care provision in motor neurone disease: A survey of multidisciplinary healthcare providers.Palliative care and social practice · 2026Article
- Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.Palliative care and social practice · 2026Article
- Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States.Muscle & nerve · 2025Article
- Palliative care pathways in Amyotrophic Lateral Sclerosis (ALS): a sequence analysis of health claims data.BMC palliative care · 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
- 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
- Article
- An Evaluation of the United Kingdom Motor Neuron Disease Nurses and Allied Health Professionals (UK MND NAHP) Workforce: A Census.PloS one · 2025Article
- Recognising dying in motor neurone disease: A scoping review.Palliative medicine · 2024Article
- Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.Neurological research and practice · 2024Article
- Article
- 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundDespite 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.
aimTo explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory.
designA 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.
resultsA 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.
conclusionThe 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.
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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.