The Balance of Give and Take in Caregiver-Partner Relationships: An Examination of Self-Perceived Burden, Relationship Equity, and Quality of Life From the Perspective of Care Recipients Following Stroke

Purpose: We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. Method: A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hebert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. Results: SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. Conclusions: For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress.