PTOTSLPQualitativeClinical rehabilitation2021

'Somebody stuck me in a bag of sand': Lived experiences of the altered and uncomfortable body after stroke.

Hannah Stott, Mary Cramp, Stuart McClean and 1 others

PMID 33706575

WHAT IT FOUND

Stroke survivors described their affected body as feeling 'disappearing', 'reappearing', 'uncontrollable' and 'isolated'.

These strange sensations caused physical and psychological discomfort. Patients struggled to describe these experiences to clinicians, often feeling abandoned and unsure if any treatment could help.

Key findings

01Four themes emerged: the 'disappearing body' (lack of sensation/awareness), the 'reappearing body' (strange, uncomfortable sensations like heaviness or pain), the 'uncontrollable body' (mismatch between intention and movement), and the 'isolated body' (social withdrawal and lack of support).

02Participants found it difficult to communicate their body experiences to clinicians, often fearing they would be labelled as having mental health issues, which contributed to feelings of abandonment.

03Most participants prioritized treatment for altered perceptions impacting mobility, but many believed no such treatments existed or that clinicians lacked the expertise to help.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The sample was recruited from stroke support groups, which may mean participants were already more accustomed to discussing their stroke experiences. The study did not achieve its intended diversity, with few older participants, few with severe stroke, and only one participant from a minority ethnic background. Participants with significant cognitive difficulties or aphasia were excluded, so the findings do not represent the experiences of those groups. The concept of 'discomfort' was interpreted by researchers; participants did not always explicitly use this term, describing sensations like pain or frustration instead.

Declared interests

The authors declared no potential conflicts of interest. The study was funded as part of a University of the West of England PhD.

The easy way to misread this

Do not interpret these themes as evidence that specific interventions work. This study describes the patient experience of altered body perception; it does not test whether mirror therapy, virtual reality, or psychological therapies effectively reduce this discomfort, although it suggests these areas need further research.

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