Life after stroke: changes in sensory health and the impact on participation

Abstract

ABSTRACT Background Research has demonstrated that adults post-stroke may experience sensory impairments across different sensory systems. There is a gap in research describing how sensory changes after stroke affect participation in health promoting activities. Objectives The purpose of this study is to understand how changes in sensory health after stroke affect participation in meaningful activities. Methods We adopted a qualitative phenomenological design to conduct four focus groups with ten participants: two focus groups with a cohort of adults post-stroke (n=5) and two focus groups with a cohort of stroke rehabilitation therapists and stroke caregivers (n=5). Focus group transcripts were coded using open and focused coding with NVivo software to develop themes. Results Participants reported changes in their visual, vestibular, proprioceptive, olfactory, gustatory, tactile, and auditory systems that affected their participation in meaningful activities. Participants also reported that they experienced insufficient resources and therapies addressing their sensory health after their stroke. Analyses yielded the following themes:(1) it’s hidden and invisible;(2) sensory changes affect participation and can be overwhelming; and (3) it’s easy to stay inside: sensory changes negatively affect social participation. Conclusions Adults post-stroke experience sensory changes that restrict their participation in meaningful activities including social activities; however, these changes were often missed. More research is needed to further explore the impact of changes in sensory health and understand needs regarding the development of assessment tools and intervention protocols to address the sensory health of adults post-stroke in the clinic, home, and community.