What underlies the difference between self-reported health and disability after stroke? A qualitative study in the UK

Nahal Mavaddat; Euan Sadler; Lisa Lim; Kate Williams; Elizabeth Warburton; Ann Louise Kinmonth; Chris Mckevitt; Jonathan Mant

doi:10.1186/s12883-021-02338-x

What underlies the difference between self-reported health and disability after stroke? A qualitative study in the UK

BMC Neurol. 2021 Aug 13;21(1):315. doi: 10.1186/s12883-021-02338-x.

Authors

Nahal Mavaddat¹, Euan Sadler², Lisa Lim³, Kate Williams³, Elizabeth Warburton⁴, Ann Louise Kinmonth³, Chris Mckevitt⁵, Jonathan Mant³

Affiliations

¹ School of Medicine, Division of General Practice, University of Western Australia, 35 Stirling Highway, Crawley, Perth, WA, 6009, Australia. nahal.mavaddat@uwa.edu.au.
² Department of Nursing, Midwifery and Health, School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK.
³ Department of Public Health and Primary Care, University of Cambridge, Strangeways Laboratory, 2 Worts Causeway, Cambridge, CB1 8RN, UK.
⁴ Department of Clinical Neurosciences, Neurology Unit, University of Cambridge, R3, Box 83, Cambridge Biomedical Campus, Cambridge, CB2 0QQ, UK.
⁵ School of Population Health and Environmental Sciences, King's College London, Addison House, London, SE1 1UL, UK.

Abstract

Background: Levels of self-reported health do not always correlate with levels of physical disability in stroke survivors. We aimed to explore what underlies the difference between subjective self-reported health and objectively measured disability among stroke survivors.

Methods: Face to face semi-structured interviews were conducted with stroke survivors recruited from a stroke clinic or rehabilitation ward in the UK. Fifteen stroke survivors purposively sampled from the clinic who had discordant self-rated health and levels of disability i.e. reported health as 'excellent' or 'good' despite significant physical disability (eight), or as 'fair' or 'poor' despite minimal disability (seven) were compared to each other, and to a control group of 13 stroke survivors with concordant self-rated health and disability levels. Interviews were conducted 4 to 6 months after stroke and data analysed using the constant comparative method informed by Albrecht and Devlieger's concept of 'disability paradox'.

Results: Individuals with 'excellent' or 'good' self-rated health reported a sense of self-reliance and control over their bodies, focussed on their physical rehabilitation and lifestyle changes and reported few bodily and post-stroke symptoms regardless of level of disability. They also frequently described a positive affect and optimism towards recovery. Some, especially those with 'good' self-rated health and significant disability also found meaning from their stroke, reporting a spiritual outlook including practicing daily gratitude and acceptance of limitations. Individuals with minimal disability reporting 'fair' or 'poor' self-rated health on the other hand frequently referred to their post-stroke physical symptoms and comorbidities and indicated anxiety about future recovery. These differences in psychological outlook clustered with differences in perception of relational and social context including support offered by family and healthcare professionals.

Conclusions: The disability paradox may be illuminated by patterns of individual attributes and relational dynamics observed among stroke survivors. Harnessing these wider understandings can inform new models of post-stroke care for evaluation.

Keywords: Stroke self-reported health quality of life disability.

MeSH terms

Aged
Aged, 80 and over
Disability Evaluation
Female
Humans
Male
Middle Aged
Self Report*
Stroke Rehabilitation*
Stroke* / complications
Survivors
United Kingdom / epidemiology