|Year : 2022 | Volume
| Issue : 2 | Page : 93-99
Relationship between disability, caregiver burden and coping with depression in stroke survivors: A cross-sectional study in South India
Saraswathi Nagaraju1, Aralikatte Onkarappa Saroja2, Karkal Ravishankar Naik2, Vijaykumar Harbishettar3
1 Department of Psychiatry, Dharwad Institute of Mental Health and Neurosciences, Dharwad; Department of Neurology, Jawaharlal Nehru Medical College, KLE Academy of Higher Education and Research, Belagavi, Karnataka, India
2 Department of Neurology, Jawaharlal Nehru Medical College, KLE Academy of Higher Education and Research, Belagavi, Karnataka, India
3 Department of Psychiatry, Geriatric Psychiatry Unit, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
|Date of Submission||01-Oct-2022|
|Date of Decision||22-Nov-2022|
|Date of Acceptance||30-Nov-2022|
|Date of Web Publication||20-Jan-2023|
Dr. Saraswathi Nagaraju
Department of Psychiatry, Dharwad Institute of Mental Health and Neurosciences Dharwad - 580 008, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Post-stroke depression (PSD) is seen in up to 35% of stroke survivors, contributing to morbidity and caregiver burden, that could deter the acute and rehabilitation treatment. Depression in stroke contributes to more disability and caregiver burden. Understanding coping methods of caregivers in PSD results in better caregiving, reduces stress and improves family relationships. There is paucity of studies examining PSD and its determinants in Indian context. Objectives: The objective is to study the association of PSD with disability, with caregiver burden, and coping methods adopted by the caregivers. Methods: Consenting participants (and their caregivers) attending Neurology outpatients with the first episode of Stroke (N=226) in a tertiary care center in a tier 2 city in South India, with 56% participants from rural background, were evaluated between three and six months of stroke. Two groups namely PSD (n = 67) and post-stroke without depression (PSwD, n = 159) based on cutoff score of 9/10 on a valid Hamilton Depression Rating Scale were compared for their demographics, social, physical, and functional factors. Barthel Disability Index (BDI) for disability, Zarit Burden Interview (ZBI) for caregiver burden and coping checklist (CCL) by Rao et al. on caregivers particularly prepared for studying in the Indian context were also administered. Results: The rate of PSD was found to be 29.6%. PSD group were older and had relatively more common in females (p < 0.001). The type of stroke and site of vascular lesion were not associated with PSD (p = 0.68 and p = 0.24). Stroke severity scores were higher in PSD group (p < 0.001). Disability as per BDI scores was greater in PSD group against PSwD group (p < 0.001). ZBI scores show greater caregiver burden in PSD group than PSwD (p < 0.001). Measures were significantly higher in all CCL sub-categories in caregivers of PSD group compared with PSwD. Conclusion: PSD prevalence of close to one third in stroke survivors, with female gender, older age, stroke severity, and functional disability as its key determinants. Furthermore, the PSD was significantly associated with caregiver burden and study also found preferred coping methods were adopted by caregivers of PSD group. Early identification and treatment of PSD is of utmost important to minimize disability, reduce caregiver burden and improvise coping methods.
Keywords: Caregiver burden, coping strategies, disability, post-stroke depression, stroke severity
|How to cite this article:|
Nagaraju S, Saroja AO, Naik KR, Harbishettar V. Relationship between disability, caregiver burden and coping with depression in stroke survivors: A cross-sectional study in South India. J Geriatr Ment Health 2022;9:93-9
|How to cite this URL:|
Nagaraju S, Saroja AO, Naik KR, Harbishettar V. Relationship between disability, caregiver burden and coping with depression in stroke survivors: A cross-sectional study in South India. J Geriatr Ment Health [serial online] 2022 [cited 2023 Feb 2];9:93-9. Available from: https://www.jgmh.org/text.asp?2022/9/2/93/368297
| Introduction|| |
Stroke is associated with neurological, psychiatric, cognitive, functional consequences of which depression generally referred to as post-stroke depression (PSD) has been reported in up to 35% of the stoke survivors., The Diagnostic and Statistical manual (DSM) 5 has described PSD as the mood disorder super-imposed on medical condition, i.e., stroke with features of depression, mania or mixed symptoms. As per the Global burden of disease 2017 report, the double burden of stroke with depression is one of the leading causes of disability adjusted life years.
Diagnosing PSD is complex as somatic symptoms and cognitive deficits overlap. PSD is often under-diagnosed and therefore under-treated, to the extent its influence on stroke outcome is ignored and underestimated.
PSD is one of the major causes of functional disability, due to inability of the stroke survivors to cope with daily stressors and to function independently in their activities. Stroke survivors with a functional disability will have different levels of depression. PSD can hamper rehabilitation management and can prolong the treatment, causing more distress to the caregivers, thus affecting the outcome. There is an overlap of clinical features related to functional disability, insult to the brain area, or apathy. It has been found that up to 80% of depression is seen in the first 3 months of stroke. Identification of PSD in the presence of other co-morbidities and complications is a challenge. A meta-analysis found that the PSD had significantly associated with measures of disability, stroke severity and stroke involving left hemisphere. Other risk factors found in another meta-analysis were female gender, age <70 and lack of social support.,
Caregiving family members play a key role in stroke management, sometimes requiring months of ongoing treatment, while there is a need for frequent visits to hospitals or rehabilitation centers. Caregiver is a person usually related and caring the patient with a chronic illness. There are also professionally trained caregivers who are paid and not related. Caregivers assist in survivors' activities of daily living, ensuring hygiene, adequate nutrition, where required assistance in eating and assist in mobility also. In general, stroke management includes acute management followed by rehabilitation. In some countries, there is early supportive discharge and multi-disciplinary continuing care is provided in the community to reduce dependency on hospital-based care and also brings down the cost of care., In India, patients depend on their caregiving family members to travel to the nearest tertiary care stroke rehabilitation unit to receive treatment. PSD is known to be associated with caregiver burden.,
The negative impact in the form of physical, emotional, social, financial, and spiritual well-being on the caregiver is termed caregiver burden and has been studied in rural Indian context also., Some of the PSD symptoms such as irritability, loss of energy, low motivation, withdrawn behavior, and hopelessness can put resistance to the family members caring effort, thus leading to increasing burden. This in turn can impact the relationships and sometimes need for residential care may arise. Caregiver burden also can involve taking time off from work to care, can have economic impact on the families. Caregiving a person with PSD could be more challenging than managing other consequences of stroke. Caregiver burden can lead to poorer treatment adherence, follow-ups and may have socioeconomic consequences.
Coping strategies are the cognitive and behavioral responses that people adopt to minimize the impact of stressful events. Lazarus and Folkman have divided the coping methods into task focused, emotion focused and problem oriented/avoidance focused. Coping methods to overcome the stress of caregiving due to the negative consequences of stroke and its accompanied severity of stroke and functional disability that can lead to physical strain, and PSD features can impact emotionally, that can hinder the treatment process. Hence, it was planned to study the attribution of depression on functional disability and the difference in burden and coping among the caregivers in Post-stroke survivors with depression and without depression.
There is a paucity of literature on PSD in the Indian context. There is a need to examine the PSD, its associated factors, and impact on caregivers in urban and rural Indian population. Therefore, the study was done with the following objectives (a) whether PSD is an independent contributing factor to the functional disability (b) whether there are differences in the caregiver burden in stroke survivors with depression and without depression (c) to explore the different coping strategies used by caregivers with depression and without depression.
| Methods|| |
A cross-sectional observational study design was adopted. This study was carried out at the Department of Neurology in KLE Hospital, a tertiary care center, in Belagavi in South India for 1 year. The study had the necessary Institutional Ethical Committee approval before commencement. Informed consent was taken from the patients and their caregivers.
All the persons with first episode of stroke and their caregivers at 3–6 months post stroke were contacted to take part in the study. Of them, 226 stroke survivors became the study participants after following inclusion and exclusion criteria. The inclusion criteria were first episode stroke patients. A history of recurrent strokes, cerebral venous thrombosis, vascular malformations, subarachnoid hemorrhages, serious medical condition, any severe psychiatric disorder were the exclusion criteria for this study. Furthermore, previous history of cognitive decline and survivors with aphasia were excluded.
The definition of caregivers for the purpose of this study includes any relative of patient who spent a significant amount of time caring the patient, who was able to provide clinically relevant information about the patient. If there were more than one, then whoever spent more time with the patient was considered. Structured standardized tools were used in the study namely the National Institutes of Health Stroke Scale (NIHSS), Barthel Disability Index (BDI), Hamilton Depression Rating Scale (Ham-D), Zarit Burden Interview (ZBI), and coping checklist (CCL).
For the purpose of this study, a cut-off score of 9/10 (ie, 10 or more) on Hamilton Depression rating scale (Ham-D) was used to diagnose depression. Following the administration of the Ham-D and based on the scores, two groups namely PSD (n = 67) and post-stroke without depression (PSwD, n = 159) were formed. Baseline information including socio-demographic profile features, risk factor profile for all the study participants.
Hamilton Depression Rating Scale
This clinician-rated scale for depression was devised in 1960 by Max Hamilton. It takes about 20 min. There are 17 items, rated on either 3-or 5-point Likert scale. In general, the higher the score severe is the depression. A score of 10–13 indicates mild, 14–17 indicates moderate and >17 indicates moderate to severe depression. In this study, this scale was administered once.
National Institutes of Health Stroke Scale
Stroke deficit rating scale in 1980s was formed to use in treatment trials, which got iterated into NIHSS. By 1995, NIHSS became a standard clinical deficit rating instrument in stroke trials. It evaluates the neurological deficits in the early periods after a stroke and can be done easily at bedside. The domains include level of consciousness, gaze, visual fields, facial weakness, motor performance of the extremities, sensory deficit, ataxia, aphasia, dysarthria, and hemi-neglect. Score of 0 denotes normal in all domains and higher score indicates more the neurological deficit with overall maximum score of 42. It is found to be valid and reliable, also when administered by non-neurologists and non-physicians.
Barthel Disability Index
Barthel Disability Index (BDI) is a simple tool that can be administered by any health professional. It has 10 items and is designed to measure the level of functional independence in the basic activities of daily living. The maximum score is 100. Anything <100 suggests disability. This has also been used previously in rural and elderly population in India.
Zarit Burden Interview
It is designed by Steven H Zarit, that assesses the stress experienced by caregivers of patients with disability. It is scored on a 5-point rating scale ranging from never (0), to nearly always. The burden score was categorized into four categories; no burden (0–21), mild-to-moderate burden (22–40), moderate-to-severe burden (41–60), and severe burden (61–80). Higher score indicates greater burden.
The CCL is an easy to administer tool. It has comprehensive list of 70 items which has been grouped under 3 broad categories: problem-focused (problem solving 10 items), emotion-focused (distraction positive 14 items, distraction negative 9 items, acceptance 11 items, religion/faith 9 items, denial/blame 11 items, and finally both the problem and emotion-focused (social support 6 items). It seems ideal to use in Indian settings, has been used previously.
Anonymized data gathered were collated and analyzed using the SPSS version 23 of Statistical Package for Social Sciences (SPSS). Descriptive and more detailed analyses such as independent t-test, Chi-Square test, and Regression analysis were performed. Two tailed tests were used during comparisons. A p < 0.05 was considered as statistically significant.
| Results|| |
Two groups were formed on the basis of Ham-D cut-off score of 9/10, showed 67 (29.6%) out of 226 (N) participants had depression. PSD group was significantly older (mean age in years = 62.28 ± 13.30) compared with the PSwD group (mean age in years = 57.57 ± 13.22) (p = 0.02). PSD rates were 23% in males compared to 49% in females, suggesting the rates are higher in females (p < 0.001). The two groups were also similar on marital status (p = 0.22), education (p = 0.36), rural residents (p = 0.44), and socioeconomic status (p = 0.34). Homemakers were more in PSD group compared with the PSwD group.
The analysis of various risk factors showed both groups PSD and PSwD were similar in rates of hypertension (p = 0.08), diabetes mellitus (p = 0.44), dyslipidemia (p = 0.78), ischemic heart disease (p = 0.12), tobacco use (p = 0.09) and use of alcohol (p = 0.05). The type of stroke either the hemorrhagic or ischemic and site of lesion namely left, right or bilateral were not significantly associated with PSD respectively (p = 0.68 and p = 0.24) [Table 1].
|Table 1: Comparison of post-stroke depression with poststroke without depression|
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The stroke severity based on the NIHSS measures was higher in PSD group (13.79 ± 4.65) compared with PSwD group (8.92 ± 5.48) with p < 0.001. BDI scores were lower in PSD group (55.75 ± 20.43) suggestive of higher level of disability in the PSD group, on comparison with the PSwD group (79.56 ± 24.54) with p < 0.001. In addition, the caregiver burden scores as measured on the ZBI showed higher burden in PSD group than PSwD group (p < 0.001) [Table 1].
The caregiver burden was found to be significantly higher in the PSD group (51.18 ± 13.89) compared to the PSwD group (28.77 ± 20.52) (p < 0.001). Measures in all the sub-categories of the caregiver burden as per ZBI measures was found to be significantly higher in the PSD group (p < 0.001). Similarly, the CCL measures in all its sub-categories were also found to be significantly higher in PSD group compared with the PSwD group [Table 2].
|Table 2: Comparison between post-stroke depression and post-stroke without depression: Caregiver burden and coping checklist (N=226)|
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There was a significant correlation with the age, gender, stroke severity, disability, and burden with the PSD. All the ZBI subcategories as well the CCL sub-categories correlate significantly with the PSD [Table 2].
Stroke severity correlated inversely with a disability on BDI scores (r = −0.64; p < 0.001) and also with caregiver burden on ZBI scores (r = −0.63; p < 0.001). In other words, higher the severity of stroke, higher are the level of disability and caregiver burden. Functional disability on BDI correlated inversely with caregiver burden on ZBI scores (r = −0.92; p < 0.001). This means, higher the level of disability, higher is the caregiver burden [Table 3].
Problem-solving, emotion-focused coping including religion, distraction and mix of both problem and emotion-focused coping methods were found to be higher in stroke survivors with depression and these methods were found to be higher in PSD group compared to the PSwD group [Table 3].
A logistic regression analysis was carried out to identify key determinants, with depression as the dependent variable. It showed age, female gender, stroke severity, and level of disability were the significant variables, contributing respectively by 6%, 14%, 35%, and 40% influencing the depression. Therefore, stroke severity and level of disability together influenced the PSD by about 75% [Table 4].
|Table 4: Logistic regression analysis with depression as dependent variable|
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Caregiver burden as measured on ZBI correlated inversely with Stroke severity on NIHSS, Functional disability on BDI and PSD (r = −0.49; p < 0.001). From caregiver's perspective, burden was associated with stroke severity, disability and PSD. Linear regression model with caregiver burden as the dependent variable showed stroke severity, disability, and depression significantly influenced the caregiver burden [Table 5].
|Table 5: Linear regression analysis with caregiver burden as a dependent variable|
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| Discussion|| |
The key findings from the study were that the PSD was associated with age, female gender, level of disability and severity of stroke, and these four factors were the key determinants for the PSD. PSD was common, as the rates were nearly 30% in this study. The type of stroke and site of lesion were not associated with the PSD. The PSD contributes significantly to the level of functional disability as well as caregiver burden. The study also found that coping strategies used by caregivers were influenced by the presence of depression.
A meta-analysis has concluded the prevalence of the PSD has been around 33%. In this study, rates were found to be 29.6%. The median age of the sample was 60 years and many participants were male. There was no significant difference between the PSD and PSwD groups in terms of educational level and socioeconomic status. But a few previous studies had found that the PSD was related to lower educational and lower socioeconomic status.
This study found a significant association of PSD with older age and female gender. Non-employed women seem to be at a higher risk for PSD as per this study. Several studies have consistently found that female gender is associated with depression. Many previous studies suggested that age is not a risk factor or determinant for PSD. In contrast to previous findings, this study found that the PSD is associated with older age compared to the PSwD group. This could be attributed to this study population, which is typical of the Indian population as study had more participants residing in rural areas compared to those from urban areas.
Risk factors such as smoking, alcohol use, ischemic heart disease, dyslipidemia, diabetes, and hypertension were not found to be associated to the PSD, which is similar to many other studies. In our study, all the risk factor variables used in the study were equally distributed in the PSD and PSwD groups. Although alcohol use seemed higher in PSD group, there was no significance as the p = 0.05 from other tests also. Smoking was found to be risk factor in one study. A study examined the inconsistencies and suggested there was more literature found on female gender, stroke severity, functional disability and support as risk factor for PSD.
Other key findings in line with previous studies, were that type of stroke and site of the vascular lesion were not significantly related to the PSD in this study.,, However there have been few studies that found left hemispheric lesion correlated with PSD.,
On comparison of the two groups by independent t-test and correlation analysis supported the previous findings of the Stroke severity and also the level of functional disability was associated with PSD, which is similar to many previous studies., The disability correlated with caregiver burden in this study. Measures of caregiver burden scores were higher in the PSD group, suggesting the association between PSD and burden, as supported by correlation analysis. Functional disability also was found to be associated with the burden. Depression, functional disability and the Stroke severity were the main determinants for the caregiver burden in this study, which is also found in other studies.,
This study is unique in terms of examining the coping mechanisms adopted by the caregivers in stroke survivors with depression. This study used the instrument developed by Rao et al. devised particularly for the Indian context. The result highlights that high caregiver burden is associated with more of emotion-focused coping strategies like problem-solving, emotion focused and both problem focused and emotion-focused coping methods were significantly adopted in stroke survivors with depression and this is the preferred coping method. Also particularly, seeking social support, and problem-solving were also noted. These results are similar to study from India by Kumar et al. and in Iran by Kazemi et al., It is essential to assist families to cope with consequences, engage them to reduce negative impact on families, ensure harmonious family relationships and the need to ask for help when needed. Similar to another study on burden and coping done in North India, the burden was associated with higher coping levels, however our study examined in the context of PSD rather than stroke itself.
This study seems to be first of its kind especially early during acute stroke management and on PSD till date, that was conducted in tier two city, in India, with a relatively larger representative sample from rural community. This study focused on examining the key determinants that are associated with the PSD. Studying the coping mechanism adopted by the caregivers along with the caregiver burden also makes it unique. There was one similar study from a tertiary institute in South India and that was on persons with chronic stroke attending Neurorehabilitation Centre. Similarly, a study on coping strategies was done on stroke and not particularly on PSD.
Depression diagnosis was based on Ham-D scores with cut-off score of 9/10 in this study. Sample size calculation was not done. Personal factors, family circumstances, past occurrence of depression as well as past occurrence of stroke were not studied, which are known to be contribute to PSD. Caregivers' characteristics were also not studied, that was needed for better understanding. Coping strategies though studied, lacked psychosocial and financial factors contributing to methods adopted by the caregivers.
Directions for future and recommendations
In this study, Ham-D is used which is simple to use. In view of the importance of the PSD, many researchers have tried to devise tools to be used specifically also. There is 17-item SS- Geriatric Depression scale (GDS) Rasch measure to screen for PSD and its magnitude, need to be studied and validated. GDS was felt to be not adequate to screen PSD as per some authors. A 30-item GDS has been found to be useful in detecting minor depression after stroke. PSD rates were lower in those who were receiving SSRIs. A more structured integrative approach involving the educational, physical, and mental health support in addition to antidepressants required in managing the PSD. Future study design should be a longitudinal follow-up of the natural course that could compare the outcome in those where depression was identified and treated compared with where intervention was not available, to shed more light on the importance of managing PSD.
| Conclusion|| |
This study first of its kind in a tier two city, with a larger sample of participants residing in rural area, in India that examined the coping strategies of the caregivers also, found rates of depression to be 29.6%. The factors associated with the PSD included older age, female gender, stroke severity, and disability. PSD was found to be significantly associated with the caregiver burden and one of the significant contributors for caregiver burden. Coping strategies adopted by caregivers highlighted that it was the preferred kind of coping, and this also provides addition to the current understanding in the Indian setting. Training of caregivers for home-based rehabilitation, and adopting better-coping styles to reduce stress should be organized at community levels. This in turn helps improving stroke care, fostering positive relationships and reduces caregiver stress. The study supports the need for more holistic approach in the stroke management, especially in the acute phase. Early identification of PSD and management could likely reduce the burden on caregivers. Improved motivation from the treatment of depression, could also improve the activeness in the engagement with the various specialists such as speech therapists, and physiotherapists, thus enhancing the recovery and reduce the morbidity. Early remission of PSD is likely to reduce the long-term disability and burden to the caregivers. Addressing the PSD in addition to supporting the caregivers, is likely to improve the outcome. These determining factors in addition to the trained clinician administering Ham-D scale may assist in identifying PSD and initiating therapy particularly in areas of a paucity of specialist psychiatrists.
Authors thank the study participants and the KAHER management.
Approval obtained from the KLE Academy of Higher Education and Research Institutional Ethics Committee, letter with Reference number KAHER/EC/19-20/2906199001, dated 28 June 2019.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]