Declining patient functioning and caregiver burden/health: the Minnesota stroke survey--quality of life after stroke study

Abstract

Purpose: Caregivers of stroke patients may adapt to changes in patient functioning over time. If adaptation occurs, then caregiver burden and health may be influenced more by worsening in patient functioning than by static levels of functioning. This study examines the relationship between patients' baseline and changes in functioning and caregivers' subjective and objective burden as well as their health.

Design and methods: Only stroke patients who had caregivers were included in this analysis (N = 356). Stroke patients (n = 281) or their proxies (n = 75) were interviewed within 4 months of hospital discharge and patients' medical records were abstracted. The primary caregiver also was interviewed at approximately the same time as the patient or proxy (N = 356). In all but one of the 75 proxy cases, the proxy was the patient's caregiver. Binomial and ordinal logistic regression models were used.

Results: Declining patient neurological functioning predicted greater objective burden and subjective burden relating to consequences for caregivers' personal lives, but it did not predict caregiver health.

Implications: The impact a patient's stroke has on a caregiver's personal life and the number of hours spent caring for the patient appear to be a function of the changes of the patient's status over time rather than a function of a "snapshot" of their functioning at baseline. If these results are confirmed, interventions to protect caregivers may be indicated for stroke patients who continue to decline after hospital discharge.

Figure 1

Conceptual model of baseline patient functioning, changes in patient functioning, and caregiver burden and health. All relationships are mediated by sociodemographic characteristics. Dashed lines indicate possible relationships not examined in this study.