Employment status, social function decline and caregiver burden among stroke survivors. A South Indian study

Abstract

Stroke leaves at least 60% of the survivors with moderate to severe disability limiting their employment status and social functioning leading to high levels of caregiver burden.

Aim

We sought to study the 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.

Methods

One hundred and fifty stroke survivors and principal caregivers (3 months–2 years post-stroke) were recruited for the study. The employment status pre- and post-stroke was assessed. The social function of the patient and caregiver was analyzed using a 6 item social function scale developed for the study, encompassing culturally relevant questions. A 20 point scale adapted from Burden assessment schedule was used to assess the caregiver burden.

Results

Mean age of the study group was 54.37 ± 12.072 (range 22–75 years), with 116 males and 34 females. Spouse was the principal caregiver for 142/150 patients (94.6%). In the stroke survivors, compared to the pre-stroke employment status of 62.7%, only 20.7% were employed post-stroke with half having change of job. But the employment status of caregiver was not reduced post-stroke (34.7% vs 33.3%). Employment loss in stroke survivors had a statistically significant association with severity of functional disability, male gender and presence of limb weakness (p values 0.037, 0.0001 and 0.043 respectively). There was an overall decline in social functions among the 6 parameters assessed in both the stroke survivors and caregivers. Of the caregiver burden, financial burden was more among female and older caregivers. The functional status and motor weakness of the stroke survivors did not tend to worsen the overall caregiver burden.

Conclusions

Loss of occupation among stroke survivors is high. The decline in social function among stroke survivors and caregivers was significant. Even though functional disability contributed to employment loss and social function decline among stroke survivors, it did not have a significant impact on caregiver burden.

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].