Employment status, social function decline and caregiver burden among stroke survivors. A South Indian study
Introduction
Ischemic stroke, the second largest cause of mortality worldwide leaves at least 60% of its survivors with moderate to severe disability, limiting their employment status and social functioning [1], [2]. A population based study from our region showed that 57.7% of urban and 56.8% of rural stroke survivors are left with moderate to severe disability [5]. Even though incidence of stroke and related deaths has declined in high income countries, the incidence has doubled in medium and low income countries in the last decade. With increasing life expectancy of the population and high prevalence of life style diseases, low and middle income countries are facing great social and financial challenges in coping with disabled stroke survivors [3]. A recent population based study on self reported stroke and disability from India, China and Latin America [4] reported that even though self reported stroke rate was low in rural and urban India (1.1% and 1.9% respectively), proportion of stroke survivors needing varied care was high in rural India (73%).
In developing countries like India, hospital and community based rehabilitation facilities are limited. This puts the burden of caring stroke survivors mainly upon the family leading to high levels of caregiver burden. With spouse being the major caregiver, their employment and social function also suffers on the long run. South London Stroke Registry reported that even though functional recovery was associated with return to paid employment post-stroke, large proportion of patients with excellent functional outcome had not resumed work [6]. There is scant data about factors contributing to loss of employment of patients with mild to moderate strokes and their caregivers.
Caregiver burden related to chronic illnesses like stroke and cancer is an area receiving great deal of attention in developed countries. A review on long term impact of stroke on its survivors and caregivers found that social and emotional consequences represent the single largest problem area among stroke survivors and caregivers, seen in around 39% [7]. Even though a few Indian authors have studied caregiver burden in stroke and their predictors [8], [9], [10], its impact on social functioning, integration and employment status is not well understood. Even the caregivers of minor stroke survivors with little or no disability are found to have reduced QOL measures at 1 year post-stroke, with increase in depression and decline in marital function [11].
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Aims
We sought to study employment status and level of change of social functioning of stroke survivors and their principal caregiver and correlate it with severity of stroke, functional disability, and anxiety and depression scores. Also we assessed caregiver burden on 3 parameters — namely financial situation, family relationships, and physical and mental stress.
Materials and methods
This study was conducted by Comprehensive Stroke Care Centre, Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, a tertiary care center for Neurological disorders in Trivandrum, South India. 150 stroke survivors and caregivers (3 months–2 years post-stroke) were recruited for the study from stroke outpatient clinic during their follow-up. Study period was from January 2011 to June 2012. Study was approved by institutional ethics committee. After informed
Results
Mean age of the study group was 54.37 ± 12.072 (range 22–75 years), with 116 males and 34 females (7.7:2.3). Majority of patients in the study group (64.7%) were above 50 years of age. Spouse was the principal caregiver for 142/150 patients (94.6%). The mean NIHSS was 3.17 (range, 0–18) and mRS was 2.21 (0–5). The baseline characteristics are given in Table 1.
Discussion
Ours is the first study from South India which has systematically looked into employment status, social function decline and caregiver burden of stroke survivors and correlated it with stroke severity, functional outcome, risk factor profile and anxiety and depression. Our patient cohort had a mean age of 54 years, which is much lower than that reported in the Trivandrum Stroke Registry. The difference could be explained by ascertainment bias, as most of the hospital based studies on stroke show
Conclusions
Loss of occupation among stroke survivors is high and has significant association with functional disability, limb weakness and male gender. The caregiver employment status did not show a significant decline post-stroke. Overall there was a decline in all parameters of social function assessed among stroke survivors and caregivers. Higher depression and anxiety scores did not lead to a significant decline in employment status or social functions. Even though there was significant financial,
Conflict of interest
The authors report no conflict of interest.
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