Informal caregivers’ burden and stress in caring for stroke survivors with spatial neglect: An exploratory mixed-method study

Background: Spatial neglect prolongs stroke survivors’ recovery to independence. However, little is known about the impact of spatial neglect on caregivers of stroke survivors: To explore the factors associated with burden and stress among informal caregivers of stroke survivors with spatial neglect. Methods: Following the previous study of 108 stroke survivors, we reached 24 stroke survivors’ caregivers, and 20 caregivers (age: M±SD=56.9±12.7 years; 12 females) completed the study. 10 survivors had symptoms of spatial neglect, and 10 did not (i.e., SN+ or SN-, respectively) at the time when discharged from inpatient ehabilitation, which was 9.3±6.2 months before the present study. Via a semi structured telephone interview, we assessed caregivers’ burden and stress qualitatively and quantitatively. Results: No difference was observed across caregiver groups in cognitive function, depressive mood, or community mobility. In comparison, caregivers of the SN+ group allocated more time to care, controlling for survivors’ disability (adjusted effective size d = 1.80). Their self-perceived burden and stress were more severe than the other group (adjusted d =.99). Qualitative analysis indicated caregivers of the SN+ group were more likely to describe economic stressors and undesirable changes in career and vacation planning. While 80% of participants preferred their care recipients to receive additional motor or mobility therapy, caregivers of the SN+ group were more likely to suggest additional therapy for cognitive impairment. Conclusions: This exploratory study suggests that spatial neglect may heighten caregivers’ burden and stress levels. Future studies with a large sample size are required.