ArticleBMJ open2019
How is poststroke fatigue understood by stroke survivors and carers? A thematic analysis of an online discussion forum.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- Online Community Support for Stroke Survivors and Caregivers: Scoping Review.Journal of medical Internet research · 2026Article
- What Is Shared in an Online Peer-Support Group Run by Stroke Survivors? An Exploratory Study With a Participatory Approach.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- An investigation of post-stroke fatigue levels and influencing factors in young and middle-aged stroke patients: a cross-sectional study.Scientific reports · 2025Article
- Post-stroke fatigue - a multidimensional problem or a cluster of disorders? A case for phenotyping post-stroke fatigue.The Journal of physiology · 2025Review
- Metaphor Diffusion in Online Health Communities: Infodemiology Study in a Stroke Online Health Community.JMIR cardio · 2024Article
- Carers' experiences and perspectives of the use of anticholinergic medications in people living with dementia: Analysis of an online discussion forum.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Experiences and Perceptions of Post-Stroke Fatigue Among Stroke Survivors in Saudi Arabia: A Qualitative Interview Study.Journal of multidisciplinary healthcare · 2023Article
- "I Give It Everything for an Hour Then I Sleep for Four." The Experience of Post-stroke Fatigue During Outpatient Rehabilitation Including the Perspectives of Carers: A Qualitative Study.Frontiers in neurology · 2022Article
- Psychometric properties of a short version of Lee Fatigue Scale used as a generic PROM in persons with stroke or osteoarthritis: assessment using a Rasch analysis approach.Health and quality of life outcomes · 2020Article
- Carers' experience of using assistive technology for dementia care at home: a qualitative study.BMJ open · 2020Article
- Conceptualising post-stroke fatigue: a cross-sectional survey of UK-based physiotherapists and occupational therapists.BMJ open · 2019Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo understand poststroke fatigue from the perspective of stroke survivors and caregivers expressed in an online discussion forum.
designThe search terms 'tiredness', 'fatigue', 'tired', 'weary' and 'weariness' were used to identify relevant posts. Thematic analysis performed by two independent researchers who coded all forum posts and identified pertinent themes. Posts were coded in relation to two research questions: (1) how is poststroke fatigue described? and (2) what coping strategies are suggested to target poststroke fatigue? Each theme was then summarised by a lead quotation in forum users' own words.
settingUK-based web forum hosted by Stroke Association, TalkStroke. Archives from 2004 to 2011 were accessed.
participants65 stroke survivors and caregivers (mean age 54 years, 61% female) contributed to 89 relevant posts that included a relevant search term. This included 38 stroke survivors, 23 individuals with family or carer role and 4 others unidentified.
resultsSix themes were generated: (1) medicalisation of poststroke fatigue: 'a classic poststroke symptom', (2) a tiredness unique to stroke: 'a legacy of stroke', (3) normalisation and acceptance of poststroke fatigue: 'part and parcel of stroke', (4) fighting the fatigue: 'an unwelcome guest', (5) survivors' and caregivers' biological explanations: 'the brain healing' and (6) coping mechanisms: 'pace yourself'. Forum users also repeatedly commented that poststroke fatigue was 'not understood by the profession'.
conclusionThis is the first study to employ data from an online forum to characterise poststroke fatigue. Our data are considered naturalistic owing to the absence of a researcher guiding the discussion and thus generates useful insights for healthcare professionals. Findings suggest a requirement for consistent understanding and explanation to be provided by healthcare professionals. The beliefs outlined here highlight the gap between clinical and community knowledge. Further research to translate understanding of patient and carer perspective into improved management of poststroke fatigue is required.
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