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

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.