Factors affecting burden on caregivers of stroke survivors: Population-based study in Mumbai (India)

Abstract

Background: Caring for stroke patients leads to caregiver (CG) strain. The aims of this study are to identify factors related to increased CG burden in stroke survivors in a census-defined population and to assess the relationship between patient characteristics and CG stress.

Materials and methods: In a prospective population-based study, 223 first ever stroke (FES) were identified over a 1-year period. At 28 days, 127 (56.9%) were alive and 79 (35%) died, and 17 were lost to follow-up. One hundred and eleven CGs of 127 FES survivors agreed to participate. The level of stress was assessed by two scales: Oberst Caregiving Burden Scale (OCBS) and the Caregivers Strain Index (CSI) in CGs of survivors with mild stroke Modified Rankin Scale (MRS 1-2) and in those with significant disability (MRS 3-5).

Results: The mean age of CGs was 45.6 years, approximately 22 years younger than that of the patients (67.5 years). Eighty-nine (80%) of the CGs were females and only 22 (20%) were males. Urinary incontinence (P=0.000008), morbidity at 28 days by MRS (P=0.0051), female gender (P=0.0183) and moderate to severe neurological deficit by National Institute of Health Stroke Scale (NIHSS) on admission (P=0.0254) were factors in FES cases leading to major CGs stress. CG factors responsible for major stress were long caregiving hours (P≤0.000001), anxiety (P≤0.000001), disturbed night sleep (P≤0.000001), financial stress (P=0.0000108), younger age (P=0.0021) and CGs being daughter-in-laws (P=0.012).

Conclusion: Similar studies using uniform methodologies would help to identify factors responsible for major CG stress. Integrated stroke rehabilitation services should address CG issues to local situations and include practical training in simple nursing skills and counseling sessions to help reduce CG burden.

Keywords: Caregiver burden; organized stroke care; stroke survivor.

Figure 1

Receiver–operating characteristic (ROC) curve for patient factors responsible for significant caregiving stress. NIHSS at 28 days and Barthel Index at 28 days contribute significantly to caregiver stress. ROC covers 79% of the area; sensitivity is low (69%) although specificity is significant (82%)

Figure 2

Receiver–operating characteristic (ROC) curve for caregiver factors responsible for major stress. The model based on three risk factors – inconvenience, demands on time, financial stress – at 1 month does quite well for predicting caregiver stress at 1 month. The area under the ROC curve is 95%, sensitivity is 86% and specificity is 92%. The odds ratio and regression coefficient are highest for inconvenience (OR 23.42), intermediate for demands on time (OR 13.54) and lowest for financial stress (OR 5.12) – all being statistically significant