Impact of Spatial Neglect on Activity and Participation: A Mixed-Methods Study

Post-stroke neglect is disabling, yet it is unclear whether existing assessments capture the extent neglect affects activity and participation. The objective of the study is to explore stroke survivor and caregiver perspectives on how neglect affects activity and participation and to compare their experiences to neglect assessments items. We conducted an explanatory sequential mixed-methods study by conducting semi-structured interviews with stroke survivors (n = 7) and caregivers (n = 7) analyzed using thematic analysis. Stroke survivors completed the Catherine Bergego Scale (CBS) and Behavioral Inattention Test (BIT). Descriptive analyses characterized participant's neglect. The standardized CBS and BIT tests indicated that stroke survivors demonstrated mild-to-moderate (CBS) or no-to-mild (BIT) neglect. In contrast, the qualitative data revealed serious safety concerns and significant ongoing difficulties participating in school, work, and family activities because of neglect. Current assessments may not measure the impact of neglect on activity or participation in life for stroke survivors. Plain Language Summary Individuals with neglect after stroke experience disability. This study interviewed individuals with neglect and their caregivers to understand whether clinical assessments capture the impact that neglect has on their daily life. Results show that existing assessments may not fully measure the challenges that individuals experience.