After stroke, changes to body perception are common. However, little is known about what these disturbed perceptions feel like to the stroke survivor. This programme of work used embodiment theory to explore stroke survivors’ experiences of altered body perception and whether these perceptions were uncomfortable from a biopsychosocial perspective. It explored whether participants indicated a need for clinical interventions and the feasibility of using assessment tools to collate information about the body. A range of methodologies were used. A scoping review of the literature identified 28 studies exploring first-person accounts of altered body perception. Stroke survivors described the body across conditions as strange and unfamiliar; reflecting a changed awareness and means of relating to the body. Concurrently, a phenomenological study was conducted. A purposive sample of 16 stroke survivors able to communicate verbally, at least six-months post-stroke and experiencing motor and sensory impairments, were selected. Semi-structured interviews were conducted and analysed using interpretative phenomenological analysis. Participants described uncomfortable altered perceptions. The body did not exist, was hindered by strange perceptions and uncontrollable. The body was isolated, but participants were hopeful for improvement. Altered perceptions were difficult to comprehend and describe. From this, a feasibility and acceptability study explored the use of three assessment tools to communicate the altered body. Ten participants experiencing including a proportion with communication problems, were purposively selected. Participants wanted to communicate the experience of altered body perception and discomfort to health professionals and their preferred visual tools to achieve this. Stroke causes a complex sense of physical and psychosocial disembodiment, which is uncomfortable and of concern to survivors. Embodiment research suggests these domains may interact with one another. Clinical recognition and support to communicate altered body perception and discomfort from a holistic perspective may elucidate the multimodal experience of altered perceptions and foster new approaches for rehabilitation
