Burden Among Stroke Caregivers
Results of a Community-Based Study From Kolkata, India
Background and Purpose—Stroke causes significant caregiver (CG) stress, which is under-reported in India. This study assesses the financial, physical, psychological, and family burden on CG of stroke patients in an urban community.
Methods—Cross-sectional survey of stroke patients and CG were selected from a community-based registry using validated scales through face-to-face interviews.
Results—Data were available from 199 stroke survivors and a similar number of CG. Increased workload, related anxiety and depression, and sleep disturbance were reported by 70%, 76%, and 43% of CG, respectively, whereas >80% reported financial worry, which was greater among slum dwellers and less educated families. CG of patients with dementia and depression experienced greater stress. Female CG received more appreciation and family bonding was well-maintained.
Conclusions—Financial stress was prominent and common among the socioeconomically weaker section. Psychological stress is similar to that of other studies. Women CG received greater appreciation. Family bonding was well-preserved in contrast to that of a western report.
Stroke causes physical, cognitive, and behavioral dysfunction necessitating caregiver (CG) support for rehabilitation and general care. Many studies1–5 associate stroke care with psychological burden. A similar scenario is expected in India6 because of increasing stroke incidence and minimal social support. Report on this issue is lacking in India. Hence, this study was undertaken to evaluate the impact of stroke on CG in Kolkata, India. Financial burden, physical and mental stress, and family and social relationships were assessed.
Materials and Methods
This cross-sectional study was conducted, after approval by Institutional Ethics Committee, on stroke survivors from an urban community-based stroke registry in Kolkata, India. Details of sampling, methodology, and cases identified are provided in the Figure.
Validated instruments were applied to stroke survivors, such as Barthel Index7 to evaluate physical disability, Bengali version of mental status examination8 for cognitive screening, Geriatric Depression Scale8 for depression, and Everyday Abilities Scale for India9 for performance in everyday activities. Kolkata Cognitive Screening Battery8 was administered to those who scored 1.5 SD below the normative data on the Bengali version of mental status examination for assessing detailed cognitive functioning.
A 20-item Burden Assessment Schedule (BAS), modified from a 40-item questionnaire,10 was used to study CG burden. Initially, 2 independent neurologists identified items appropriate for use in stroke; a third neurologist selected common questions to constitute the final questionnaire, which was validated in the community. Inter-rater and intrarater validation of BAS showed intraclass correlation coefficient values of 0.84 and 0.80 for every question.
In the study, CG was defined as the unpaid person closely involved in physical (feeding, bathing, toileting, walking) and emotional care (empathic listening, encouragement and motivation to adhere to treatment), and CG was commonly a family member living with the patient. Health professionals included doctors, nurses, and physiotherapists. Stroke was defined according to standard criteria as in a previous study;6 dementia was defined as per Diagnostic and Statistical Manual of Mental Disorders, fourth edition11 criteria. Geriatric Depression Scale score ≥21 indicated depression.8 Slums were identified as urban regions where migrants from rural areas live in unhygienic and overcrowded conditions and as belonging to the low socioeconomic category.
Response distributions to individual questions in BAS from CG of patients, with and without dementia or depression or both, were compared by χ2 test (P<0.05 considered significant). This also applied to assessing differences between other subgroup types. Data are reported with 95% CI. Analysis was performed by Statistica, version 6 (Statsoft).
Demographic and clinical data of patient–CG pairs are presented in the Figure and Table 1, whereas Table 2 depicts CG responses to the BAS questionnaire. Overall, CG were younger and more commonly women.
Regarding financial burden, most CG were worried about expenses incurred during the current illness and about future financial situations. Financial worry was noted in 81% of CG (95% CI, 69.27–95.08) and was more prominent among slum dwellers than nonslum dwellers (P=0.04), the uneducated group than the educated group (P<0.00), and when disability was prolonged (P<0.01).
Increased workload led to physical and mental stress in 70% of CG (95% CI, 59.16–83.01) and the majority had depression and anxiety. An almost similar proportion of CG felt frustrated with slow improvement of stroke. Sleep disturbances, loneliness, and behavioral disturbances were noticed in ≈40% of CG (Table 2).
Regarding family and social relationships, ≈41% to 61% CG received support from a spouse, other family members, friends, and relatives (Table 2). Family integrity was maintained in 68% of families. Sixty-eight-percent of CG (95% CI, 56.61–80.78) were unsatisfied with health professionals. Female CG were more appreciated than male CG (P=0.03).
Presence of dementia and depression in stroke survivors caused significant deterioration of health (P=0.03), sleep (P=0.01), and loneliness (P=0.01) among CG in contrast to CG of survivors without dementia and without depression. However, no statistical significance was observed with different aspects of care giving in relation to stroke type, number of stroke episodes, and occurrence or absence of seizures.
This study reports financial, physical, and mental stress experienced by stroke CG and the influence of familial and social relationships among them in an urban community setting in India. Research in this area is globally limited,1,2 especially in Asia,3–5 and, to the best of our knowledge, has not been undertaken previously in India.
Lack of public financial support for chronic disability like stroke poses problems for CG in India. Financial difficulties are compounded by limited employment opportunities for stroke survivors who are aged or sole earners in the family, the possibility of job retrenchment because of disability or long absenteeism or both, and continuing expenses for medicine and physiotherapy. The financial worries were more common among slum dwellers and less educated CG, possibly because of limited financial capability.
CG experienced psychological stress, including depression and anxiety, similar to that in other studies.1,3–5 This was further aggravated by slow improvement of stroke survivors or coexistence of dementia or depression or both. The natural history of slow recovery after the initial rapid phase is common among many survivors, which will probably be better-managed by proper counseling of CG,4 and this merits further study.
Although less than half of CG report domestic support from someone other than spouse, stability is maintained in more than two-thirds of families, probably indicating greater stress tolerance, typical of Indian culture, in contrast to that of western reports.1 Considerable support from family members, friends, and relatives suggests social bonding. The majority of CG are female, which is a common observation globally,3–5 and they were more appreciated by the patient cohort in this study.
However, there are certain limitations. BAS does not provide unified score of burden to measure magnitude of different types of stress. Being a cross-sectional study, the scope of observing CG outcome at different time points could not be evaluated.2 Issues of sexuality in the BAS questionnaire were omitted because field workers and respondents were reluctant to address it. Thus, our study documents financial stress among the majority of CG, comparable psychological stress, and well-maintained familial stability among families of stroke patients, which is typical of the tolerant Indian culture. These findings highlight the need for better financial facilities, such as wide coverage of medical insurance and upgrading of the social support system.
The authors thank members of ICMR Task Force on Neurological Disorders for advice, and our field workers and the surveyed individuals for the cooperation extended by them at all times.
Sources of Funding
Sponsored by the Indian Council of Medical Research (ICMR), New Delhi, India (project SWG/Neuro/20/2005/NCD-I). Dr Sujata Das received remuneration as Senior Research Fellow from this project.
- Received May 5, 2010.
- Accepted July 29, 2010.
Anderson CS, Linto J, Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke. 1995; 26: 843–849.
Morimoto T, Schreiner AS, Asano H. Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age Ageing. 2003; 32: 218–223.
Das SK, Banerjee TK, Biswas A, Roy T, Raut DK, Mukherjee CS, Chaudhuri A, Hazra A, Roy J. A prospective community-based study of stroke in Kolkata, India. Stroke. 2007; 38: 906–910.
Mahoney FI, Barthel DW. Functional evaluation: The Barthel Index. Maryland State Med J. 1965; 14: 61–65.
Das SK, Banerjee TK, Mukherjee CS, Bose P, Biswas A, Hazra A, Dutt A, Das S, Chaudhuri A, Raut DK, Roy T. An urban community-based study of cognitive function among non-demented elderly population in India. Neurol Asia. 2006; 11: 37–48.
Thara R, Padmavati R, Kumar S, Srinivasan L. Burden assessment schedule: instrument to assess burden on caregivers of chronic mentally ill. Indian J Psych. 1998; 40: 21–29.
American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed. Washington, DC: American Psychiatric Association; 1994.