How is poststroke fatigue understood by stroke survivors and carers? A thematic analysis of an online discussion forum.

Thomas, Karen; Gamlin, Chloe; Simoni, Anna De; Mullis, Ricky; Mant, Jonathan

doi:10.1136/bmjopen-2019-028958

Cited by 14 publications

(12 citation statements)

References 23 publications

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“…This study used hermeneutic phenomenology28–30 as a qualitative methodology31 32 with thematic analysis33–36 of responses to semi-structured interview questions. Hermeneutic phenomenology deals with the way in which the world is understood and interpreted in relation to cultural, social and historical contexts.…”

Section: Methodsmentioning

confidence: 99%

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

2020

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ObjectiveAssistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers’ experience of using AT in supporting and caring for persons with dementia who live at home.DesignQualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes.SettingCommunity-based within the UK.ParticipantsTwenty-three (14 women, 9 men) adult carers of persons with dementia who have used at least one AT device.ResultsAll participants reported benefiting to varying degrees from using AT. There were 5 themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses.ConclusionsCarers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.

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Section: Methodsmentioning

confidence: 99%

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

2020

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“…PSF has been reported as an unmet need that is often misunderstood 1 9. Our findings suggest that part of the problem may be that therapists working with stroke survivors conceptualise, explain and manage PSF in different ways.…”

Section: Discussionmentioning

confidence: 83%

“…Despite this, PSF lacks an agreed definition, gold-standard outcome measure or an evidence-based therapeutic option 6–8. Recent qualitative work contextualising PSF from a stroke survivor and caregiver perspective highlighted that acknowledgement of PSF provided legitimacy, but healthcare professionals did not approach PSF in a consistent way 9. In order to understand why this is, it is important to gain insight into the perspective of healthcare professionals on their understanding and management of the condition 3.…”

Section: Introductionmentioning

confidence: 99%

Conceptualising post-stroke fatigue: a cross-sectional survey of UK-based physiotherapists and occupational therapists

et al. 2019

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With survival after stroke improving, more people are discharged into the community with multiple and persistent deficits. Fatigue is a common unmet need for stroke survivors, but there are no evidence-based guidelines for its assessment and management. This study explored how UK-based therapists conceptualise post-stroke fatigue (PSF) in current practice.ObjectiveTo describe current understanding of PSF among physiotherapists (PT) and occupational therapists (OT).DesignA cross-sectional online survey using Qualtrics software (a survey creation and analysis programme) was sent to therapists working with stroke survivors in 2019. Responses to the open ended question, ‘How would you describe PSF if approached by another healthcare professional?’ were analysed thematically by two independent researchers.Participants137 survey respondents (71 PT and 66 OT) from a range of clinical settings (25 acute care, 24 sub-acute rehabilitation care, 3 primary care and 85 community care) with 7 months-36 years of experience working with stroke survivors completed the survey.ResultsRespondents stated that PSF should be regarded as an important medical condition because it is common and can be associated with severe symptoms. Symptoms were perceived to be highly variable and the syndrome was difficult to define objectively. It was felt to have both physical and cognitive components. A variety of different opinions were expressed with regard to causation, conceptualisation and best management.ConclusionTherapists working with stroke survivors conceptualise and manage PSF in different ways. Clinical practice is hampered by a lack of a widely adopted definition, and a small evidence base. Research into causes and management of PSF is a priority.

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“…Based on the findings from this study, the idea may arise that a single "perfect" fatigue item could perform as well as multi-item versions assessing subtly different aspects of fatigue. Although this could be explored in this sample and others where the LFS has been evaluated using Rasch analysis [13,14], another body of evidence from qualitative research suggests that multiple items may be necessary, as the phenomenon of fatigue may be perceived by patients in multiple and complex ways [31][32][33]. Thus, the balancing act between developing psychometric excellence and measuring fatigue's complex manifestations is likely to continue.…”

Section: Statistical Approach and Criteriamentioning

confidence: 96%

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

Bragstad

Lerdal

Kirkevold

et al. 2020

Health Qual Life Outcomes

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Background: Fatigue is a common symptom associated with a wide range of diseases and needs to be more thoroughly studied. To minimise patient burden and to enhance response rates in research studies, patientreported outcome measures (PROM) need to be as short as possible, without sacrificing reliability and validity. It is also important to have a generic measure that can be used for comparisons across different patient populations. Thus, the aim of this secondary analysis was to evaluate the psychometric properties of the Norwegian 5-item version of the Lee Fatigue Scale (LFS) in two distinct patient populations. Methods: The sample was obtained from two different Norwegian studies and included patients 4-6 weeks after stroke (n = 322) and patients with osteoarthritis on a waiting list for total knee arthroplasty (n = 203). Fatigue severity was rated by five items from the Norwegian version of the LFS, rating each item on a numeric rating scale from 1 to 10. Rasch analysis was used to evaluate the psychometric properties of the 5-item scale across the two patient samples. Results: Three of the five LFS items ("tired", "fatigued" and "worn out") showed acceptable internal scale validity as they met the set criterion for goodness-of-fit after removal of two items with unacceptable goodness-of-fit to the Rasch model. The 3-item LFS explained 81.6% of the variance, demonstrated acceptable unidimensionality, could separate the fatigue responses into three distinct severity groups and had no differential functioning with regard to disease group. The 3-item version of the LFS had a higher separation index and better internal consistency reliability than the 5-item version.

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How is poststroke fatigue understood by stroke survivors and carers? A thematic analysis of an online discussion forum.

Cited by 14 publications

References 23 publications

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

Conceptualising post-stroke fatigue: a cross-sectional survey of UK-based physiotherapists and occupational therapists

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

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