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

Abstract

Background: Spatial neglect prolongs stroke survivors’ recovery to independence. However, little is known about the impact of spatial neglect on caregivers of stroke survivors.

Objective: 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 rehabilitation, 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.

Keywords:

• Stroke
• Spatial neglect
• Caregiving
• Dependency burden
• Caregiver stress

Acknowledgement

The authors thank the study participants and the medical students of Rutgers University — Harsha Ayyla, Chrystal Chang, and Michael Tamimi — for participants recruitment, data collection, and data organization. The first author (Chen) is listed as the inventor of two pending patents that are not related to the reported study. The pending patents are U.S. Patent Application No. 14/278,776 and International Patent Application No. PCT/US15/29822.