Background: After stroke, changes to body perception are common. However, little is known about what these disturbed perceptions feel like to the stroke survivor. This study took a phenomenological approach to explore experiences of
altered body perception, whether these perceptions were uncomfortable, and whether participants indicated a need for clinical interventions.
Method: A purposive sample of 16 stroke survivors were predominantly recruited from community support groups for stroke. All participants were at least six months post-stroke, experiencing motor and sensory impairments and able to communicate verbally. In-depth, semi-structured interviews were conducted in participants’ homes. Interviews were audio-recorded, transcribed verbatim, and analysed alongside reflexive notes using an interpretative
phenomenological approach. Ethical approval was obtained from University of the West of England.
Results/Findings: Four themes emerged. Participants described a body which did not exist; a body hindered by strange sensations and distorted perceptions; an uncontrollable body; and a body isolated from health professionals and clinical interventions. Participants expressed discomfort and feelings of conflict towards the body. They found their experiences difficult to understand
and hard to describe.
Discussion: Altered body perceptions left survivors feeling disembodied: their bodies perceived as strange, uncooperative, uncomfortable, and isolated from support. This is the first study to look at altered body perceptions in terms of patient comfort.
Conclusion: These findings highlight the need for health professionals to recognize and support the communication of stroke survivors’ experiences of altered body perceptions and discomfort. Further research is needed to determine new ways to communicate about altered body perception and develop interventions to improve body comfort.