Abstract
Background:
A principal caregiver (CG) is directly affected by the patient's health problems leading to CG strain. In the present study, we evaluated the different factors related to increased CG burden in stroke survivors and assessed the relationship between patient's personal and clinical characteristics and CG's stress.
Material and Methods:
In this prospective, follow-up study, a total of 141 principle CGs of 164 First-ever stroke (FES) survivors were subjected to the Caregivers Strain Index (CSI) and Oberst Caregiving Burden Scale (OCBS) at 30 days (n = 141), 90 days (n = 129), and 6 months (n = 119) after informed consent. Patients were subjected to modified Rankin Scale (mRS) and Barthel index score assessment at the end of 30 days.
Results:
The mean age of CG was 49.8 ± 21.0 years, approximately 20 years lesser than that of the patients. 102 (72.34%) CGs were females. Urinary incontinence (p < 0.006) morbidity at 30 days, mRS (p = 0.004), and moderate to the severe neurological deficit on admission (p = 0.003) were the patient factors in FES cases leading to significant CGs stress. CG factors responsible for major stress were long caregiving hours (P < 0.001), anxiety (P < 0.001), disturbed night sleep (P < 0.001), financial stress (P < 0.001), younger age (P = 0.002), and CGs being daughters-in-law (P = 0.039).
Conclusion:
CG burden increases with increased severity of stroke. Integrated stroke rehabilitation services should also address CGs issues along with patients.
Keywords: Caregiver burden, caregivers, organized stroke care, stroke survivor
INTRODUCTION
Stroke is defined as 'a neurological deficit attributed to an acute focal injury of the central nervous system (CNS) by a vascular cause.'[1] An intriguing finding emerging from stroke incidence studies in our country is that Indians are more susceptible to stroke than their Western counterparts. The estimated incidence rate of stroke in India has recorded, in different studies, the age-standardized incidence rate of 145 and 154 per 1,00,000 per year[2]; whereas in the U.S., it is 107 per 1,00,000; in Europe, 61 to 111 per 1,00,000 per year; and Australia 99 per 1,00,000 per year.[3] Caring for stroke patients leads to caregiver (CG) stress. In stroke patients' care and rehabilitation, focus on CG stress is often neglected.[4] CG is defined as “A stroke survivor's family member who usually provides the most important long-term support during recovery and rehabilitation.” CG can also be described as “an unpaid person who lives with the physical care or managing with the disease and is most closely involved in taking care of them at home.[5] The CG is vulnerable to stress and strain, developing due to nursing/attending to a patient over a prolonged period.[6]
CG burden or stress is a multidimensional concept that entails physical, social, psychological, and financial factors. This study aims to assess different aspects of increased CG burden in stroke survivors and assess the relationship between patient personal and clinical characteristics and CG stress.
MATERIAL AND METHODS
The study was conducted from March 2020 to March 2021 in the Department of Neurology, at tertiary care and university teaching hospital. All patients with first-ever stroke (FES) were included (both ischemic and hemorrhagic stroke), evident by either computed tomography (CT) or magnetic resonance imaging (MRI) of the brain.[7] Primary CGs' demographic data (Rural and Urban), relationship with the patient, hours of care per day, educational qualifications, occupation, additional CG, anxiety, depression, and financial difficulties were obtained. Two scales ascertained their level of stress: the CG burden was measured by the Caregivers Strain Index (CSI)[8] and Oberst Caregiving Burden Scale (OCBS)[9] at 30 days after stroke and subsequent follow-up at 3 and 6 months.
We followed the same methodology adopted by Bhattacharjee et al.[4] to screen and evaluate the present study population. The OCBS consists of 15 questions on tasks and activities to help the patient, and the responses to each of them were graded. (A score of 15–40 was considered mild stress, and 41–60 was graded as severe stress.)
The CSI has a set of 13 questions. The CSI measures strain related to care provision. There is at least one item for each of the following major domains: employment, financial, physical, social, and time. Positive responses to seven or more items on the index indicate a greater level of strain. The Score range is 1-5, 1 being the least difficult and 5 being most difficult. They are further grouped into 15–30 (Mild stress), 31–45 (Moderate stress), and 46–60 (Severe). Interview was administrated both telephonic as well as in-person, in view of ongoing coronavirus disease 2019 (COVID-19) pandemic.
Institutional Ethical Committee approval and written informed consent were obtained from all the patients before commencing the study. The identity of stroke subjects and the CGs were not divulged; codes were assigned to each case.
Statistics
All the data analyzes were performed using SPSS Statistics Version 25. Frequency distribution and cross-tabulation were performed to prepare the tables. Quantitative variables were expressed as mean and standard deviation, whereas categorical variables were expressed as number and percentage. A Chi-square test was performed to compare the categorical data. A P value of <0.05 is considered significant.
RESULTS
During the study period, (March 2020 to March 2021) 271 stroke patients were identified, of which 251 were FES. The mean age of patients was 63.5 ± 12.30 years, which ranged from 35 to 90 years. At 30 days, 164 (64%) were alive, 59 (23%) died, and 28 (11%) were lost to follow-up of the 164 patients alive at 30 days, 15 were independently requiring no CG's help, and 08 did not agree to participate; hence, 141 CGs were enrolled in the study [Figure 1]. Out of 141 patients, 52 (36.8%) had a mild disability, and 89 (63.2%) were left with moderate to severe disability. Of 141 CGs, female preponderance 102 (72%) was noted.
Figure 1.
Flow diagram showing study participants
The age of primary CG ranged from 35 to 90 years. The mean age of female and male CG was 42.8 years (±17.3) and 49.8 years (±21.0), respectively, highlighting that the mean age of CGs was 20 years younger than that of the patients. As for relationship to the patient, 47 (33.33%) were spouse, 39 (27.66%) were children, 37 (26.24%) were daughter-in-laws, 16 (11.35%) were relatives (sibling, aunt, uncle, and extended family members), two (2.19%) was a maid and one (0.70%) was son-in-law.
Factors affecting the CG burden
Patient characteristics
As shown in Table 1, patient factors leading to increased caregiving burden included patient being female (P = 0.0104), moderate to the severe neurological deficit by National Institute of Health Stroke Scale (NIHSS) scale on admission (P = 0.003), morbidity at 30 days by mRS (P = 0.004) and poor recovery at 30 days with Barthel Index score of less than 50 (P < 0.001). However, the patient's age, type of stroke, presence of risk factors like hypertension, diabetes mellitus, and ischemic heart disease was not related to increased CG burden.
Table 1.
Patient characteristics responsible for caregiver stress (n=141) at 30 days
| Patient factors | Stress |
P (Log-likelihood) | |
|---|---|---|---|
| Mild (%) | Major (%) | ||
| Age (Years) | |||
| ≤45 | 9 (10.71) | 8 (14.03) | 0.730 |
| >45) | 75 (89.28) | 49 (85.96) | |
| Gender | |||
| Male | 50 (59.52) | 18 (31.57) | 0.011 |
| Female | 34 (40.47) | 39 (68.42) | |
| Pre-stroke modified ranking scale | |||
| Mild (0-2) | 63 (75) | 42 (73.68) | >0.05 |
| Moderate-severe (3-5) | 21 (25) | 15 (26.31) | |
| Pre-stroke living situation | |||
| Independent | 65 (77.38) | 45 (78.94) | 0.409 |
| Dependent | 19 (22.62) | 12 (21.06) | |
| The neurological deficit on admission by NIHSS | |||
| Mild (0-5) | 37 (44.05) | 12 (21.05) | 0.003 |
| Moderate-severe (6-42) | 47 (59.95) | 45 (78.95) | |
| Morbidity at 30 days by MRS | |||
| Mild (0-2) | 43 (47.1) | 9 (18.40) | 0.004 |
| Moderate–severe (3-5) | 49 (52.9) | 40 (81.60) | |
| Disability at 30 days by Barthel Index | |||
| Good recovery (76-100) | 54 (58.67) | 12 (24) | <0.001 |
| Poor recovery (0-75) | 38 (41.33) | 37 (76) | |
| Risk factors hypertension | |||
| Yes | 72 (85.71) | 47 (82.45) | 0.6209 |
| No | 12 (14.28) | 10 (17.55) | |
| Diabetes mellitus | |||
| Yes | 40 (47.62) | 28 (49.12) | 0.606 |
| No | 43 (51.19) | 28 (49.12) | |
| Insufficient data | 1 (1.19) | 1 (1.76) | |
| Type of stroke | |||
| Ischemic stroke | 75 (89.28) | 45 (78.95) | 0.326 |
| Hemorrhagic stroke | 9 (10.72) | 12 (21.05) | |
Data are expressed as frequency (percentage). NIHSS: National Institute of Health Stroke Scale; mRS (Modified Rankin Scale).
CG factors
Younger age (<45 years), female gender, long caregiving hours (7.3 h per day), CG being daughters-in-law faced significant stress, anxiety, disturbed night sleep, and financial stress were the significant predictor associated with high caregiving stress.
These factors consistently showed that the CG burden was maximum at day 30, and showed a consistent reduction at 90 days and 6 months on a serial follow-up. On the other hand, education, employment status, marital status, and the presence of additional CG were not related to significant CG stress [Table 2].
Table 2.
Caregiver factors responsible for stress (n=141) at 30 days
| Caregiver characteristic | Stress |
P (Log-likelihood) | |
|---|---|---|---|
| Mild n (%) | Major n (%) | ||
| Age (Years) | |||
| ≤45 | 40 (43.95) | 35 (70) | 0.002 |
| >45 | 51 (56.05) | 15 (30) | |
| Gender | |||
| Male | 28 (30.77) | 11 (22) | 0.063 |
| Female | 63 (69.23) | 39 (78) | |
| Education | |||
| Till high school | 79 (86.82) | 45 (90) | 0.730 |
| More than high school | 12 (13.18) | 5 (10) | |
| Employment status | |||
| Employed | 25 (27.47) | 16 (32) | 0.503 |
| Unemployed | 66 (72.53) | 34 (68) | |
| Duration of care (hours/day) | |||
| <4 | 68 (74.73) | 14 (28) | <0.001 |
| >4 | 23 (25.27) | 36 (72) | |
| Relationship to patient | |||
| Spouse | 37 (40.66) | 10 (20) | 0.039 |
| Son/daughter | 25 (27.48) | 14 (28) | |
| Son-in-law/daughter-in-law | 15 (16.49) | 22 (44) | |
| Other relatives | 12 (13.18) | 4 (8) | |
| Maid | 2 (2.19) | 0 (0) | |
| Marital status | |||
| Married | 75 (82.42) | 39 (78) | 0.315 |
| Unmarried | 16 (17.58) | 11 (22) | |
| Anxiety | |||
| Yes | 35 (38.46) | 44 (88) | <0.001 |
| No | 56 (61.54) | 6 (12) | |
| Disturbed night sleep | |||
| Yes | 20 (21.98) | 40 (80) | <0.001 |
| No | 71 (78.02) | 10 (20) | |
| Financial stress | |||
| Yes | 25 (27.47) | 35 (70) | <0.001 |
| No | 66 (72.53) | 15 (30) | |
| Additional caregiver | |||
| Yes | 43 (47.25) | 27 (54) | 0.410 |
| No | 48 (52.75) | 23 (46) | |
| Caregiver training | |||
| Yes | 6 (6.60) | 2 (4) | 0.345 |
| No | 85 (93.40) | 48 (96) | |
CG burden assessment
The CG burden was assessed, viz. the OCBS and the CSI instruments. The OCBS helped identify the level of difficulty in performing tasks and activities for the patient. Tasks like medical and nursing care (P = 0.005), emotional support to the patient (P < 0.001), providing company and arranging transport (P < 0.001), managing patient's finances (P < 0.001), cooking, washing clothes (P < 0.001), managing behavior problems (P < 0.001), daily communication like reading, writing (P = 0.004), and planning daily activities for the patient (P = 0.003) gave rise to higher scores and higher burden [Table 3].
Table 3.
Caregiver factors leading to stress by Oberst Caregiving Burden Scal
| Caregiver factors | Category | Stress at |
P (Log-likelihood) | ||
|---|---|---|---|---|---|
| 30 days n (%) | 90 days n (%) | 6 months n (%) | |||
| Medical nursing treatment | Mild | 119 (84.4) | 120 (93.0) | 114 (95.8) | 0.005 |
| Severe | 22 (15.6) | 9 (7) | 5 (4.2) | ||
| Personal care, bathing, etc. | Mild | 101 (71.6) | 99 (76.7) | 99 (83.2) | 0.039 |
| Severe | 40 (28.4) | 30 (23.3) | 20 (16.8) | ||
| Assistance with walking, exercise, etc. | Mild | 102 (72.3) | 94 (72.9) | 91 (76.5) | 0.061 |
| Severe | 39 (27.7) | 35 (27.1) | 28 (23.5) | ||
| Emotional support for the patient | Mild | 59 (41.8) | 87 (67.4) | 96 (80.6) | <0.001 |
| Severe | 82 (58.2) | 42 (32.6) | 23 (19.3) | ||
| Monitoring patient’s progress | Mild | 112 (79.4) | 110 (86.8) | 105 (89.2) | 0.392 |
| Severe | 29 (20.6) | 19 (13.1) | 14 (10.7) | ||
| Providing transport or company | Mild | 96 (68.1) | 107 (83.8) | 108 (91.3) | <0.001 |
| Severe | 45 (31.9) | 22 (16.1) | 11 (8.6) | ||
| Managing the patient’s finances | Mild | 55 (39.0) | 86 (66.6) | 86 (72.3) | <0.001 |
| Severe | 86 (61.0) | 43 (33.3) | 33 (27.7) | ||
| Additional tasks (cooking, washing) | Mild | 94 (66.6) | 104 (80.6) | 104 (87.4) | <0.001 |
| Severe | 47 (33.3) | 25 (19.4) | 15 (12.6) | ||
| Outdoor chores (shopping, banks, etc.) | Mild | 102 (72.3) | 108 (83.7) | 104 (87.4) | 0.001 |
| Severe | 39 (27.7) | 21 (16.3) | 15 (12.6) | ||
| Planning activities for patient | Mild | 102 (72.3) | 103 (79.8) | 106 (89.2) | 0.003 |
| Severe | 39 (27.7) | 26 (20.2) | 13 (10.9) | ||
| Managing behavior problems, moods | Mild | 68 (48.2) | 84 (65.1) | 93 (78.2) | <0.001 |
| Severe | 73 (51.8) | 45 (34.9) | 26 (21.8) | ||
| Arranging substitute help | Mild | 109 (77.3) | 110 (85.3) | 106 (89.0) | 0.005 |
| Severe | 32 (22.7) | 19 (14.7) | 13 (11) | ||
| Communication (reading, writing) | Mild | 108 (76.6) | 105 (81.4) | 105 (88.3) | 0.004 |
| Severe | 33 (33.4) | 24 (18.6) | 14 (11.7) | ||
| Scheduling appointments, transport, outside help, etc. | Mild | 109 (77.3) | 109 (84.5) | 104 (87.4) | 0.002 |
| Severe | 32 (22.7) | 20 (15.5) | 15 (12.6) | ||
| Seeking information from doctors | Mild | 116 (82.3) | 118 (91.5) | 116 (97.5) | 0.001 |
| Severe | 25 (17.7) | 11 (8.5) | 3 (2.5) | ||
Follow-up assessments at 30 days, 3 months, and 6 months following stroke revealed that most of the factors mentioned above were responsible for higher stress consistently. However, the overall/total burden scores were high at day 30 and improved at the end of 6 months post-stroke.
DISCUSSION
India is a developing country where the aging population, changes in lifestyle, and urbanization are taking place at a quite a rapid rate which contribute to the rise of non-communicable diseases including stroke.[10]
The recent study confirms the stroke burden within the aged populations. The overall age-adjusted stroke prevalence rates in rural and urban areas are 84–262/100,000 and 334–424/100,000, respectively, in different parts of the country during the past decade, which is nearly the same as in developed countries.[11]
In Asian countries, including India, taking care of stroke patients is a burden because one-third of these stay at home rather than in care centers like that in developed nations. The joint family system with ample of space prevails in rural area, wherein a tiny apartment, along with many family members stay together sharing small infrastructural facilities in urban areas.[12] Therefore, any patient with a major illness like stroke is preferably sent to a nearby healthcare facility. Still, this may not always be possible due to economic constraints and many other insufficient facilities.[13] This burden predominantly affects the low- and middle-income countries. The incidence of stroke was maximum in the age group of 55–80 years. Young patients who were affected with stroke were 10.71% of patients.[14]
Most of the CGs of stroke survivors suffer at an all-time significant amount of stress, which also highlights the financial, emotional, physical, and mental anxiety faced by stroke CGs and the influence of family bonding and social customs.[15,16] Seventy two percent of the CGs were female, and most of the patients were cared for by immediate family members like spouse, son/daughter, son-in-law, daughter-in-law, siblings, etc. The family members had to adjust their work schedules, while many had to give up their jobs. Spouse CGs had relatively mild stress than younger CGs, and daughter-in-laws faced major stress. In India, in a joint family, all members are helping CGs such as the spouses and daughters-in-law for physical management, men support medication and financially, children in an improving environment, and neighbors and relatives help when looking after chores.[17,18] This contrasts with western culture and is a boon in disguise. Similar observations have been reported from Indian Female Caregivers, and stroke severity determines CG stress in stroke patients.[19] The majority (72.34%) of the CGs were females.
Sixty-five percent of CGs reported moderate to severe burden. Eighty one percent of CGs lose their jobs, whereas half of the CGs suffer from sleeplessness, mental stress, and physical disturbance. About 3/4 of the CGs were reported their financial as well as physiological burden. A group of CGs says all the disorders such as more sleeping, health, wealth, and social life disturbances. The patient's bladder and bowel problems, shoulder pain, non-cooperative attitude for medication administration, and physiotherapy were more upsetting for CGs. Female CGs are faced with more difficulties than male CS. More sleep disturbance, physical and psychological stress, for patient's bladder, bowel, personal hygiene needs, and physiotherapy. Unlike other studies, our study showed that morbidity of the patient (severe mRS score of 3–5) was a significant factor leading to higher CGs' stress. Predischarge training of the CG in activities of daily living (moving, handling, a transferring patient from bed to chair, chair to the toilet), nursing activities (feeding), communication (verbal and nonverbal) interaction with family, friends, and society for social reintegration is more essential. It will reduce the anxiety stress of CGs and improve the quality of life of the stroke survivor and CGs. Therefore, the CG needs to be motivated, in good physical health and emotionally sound, financially resourceful, and adequately trained.[8,20] Also, a higher educational level of the CG is associated with a reduced level of CG burden, as is aptly demonstrated in a study from Western India.[21] There was an interesting finding that over the time the mild stress was increased over first months to 6th-month follow-up while the severe stress reduces significantly by OCBS [Table 3]. The stress by Caregiver Strain Index also having similar trends [Table 4]. Probable explanation that at initial stage of FES patient are highly dependent of CG for every aspect including physical, emotional as well as financial, which is going to reduce over the time with recovery.
Table 4.
Caregiver factors leading to stress by Caregiver Strain Index
| Category | Stress at |
P (Log-likelihood) | ||
|---|---|---|---|---|
| 30 days n (%) | 90 days n (%) | 6 months n (%) | ||
| Sleep disturbance | ||||
| Yes | 61 (43.3) | 33 (25.6) | 29 (24.0) | <0.001 |
| No | 80 (56.7) | 96 (74.4) | 90 (76.0) | |
| Inconvenience | ||||
| Yes | 57 (40.4) | 33 (25.6) | 24 (20.2) | 0.006 |
| No | 84 (59.6) | 96 (74.4) | 95 (79.8) | |
| Physical strain | ||||
| Yes | 57 (40.4) | 37 (28.7) | 25 (20.9) | 0.005 |
| No | 84 (59.6) | 92 (72.3) | 94 (79.1) | |
| Confining at home | ||||
| Yes | 71 (50.4) | 44 (33.1) | 27 (22.5) | <0.001 |
| No | 70 (49.6) | 85 (65.9) | 92 (77.5) | |
| Family adjustments | ||||
| Yes | 83 (58.9) | 48 (37.2) | 25 (21) | <0.001 |
| No | 58 (41.1) | 81 (62.8) | 94 (79) | |
| Changed personal plans | ||||
| Yes | 80 (56.7) | 52 (40.3) | 27 (22.5) | <0.001 |
| No | 61 (43.3) | 77 (59.7) | 95 (77.5) | |
| Demands on time | ||||
| Yes | 65 (46) | 42 (32.6) | 24 (20.2) | <0.001 |
| No | 76 (54) | 87 (67.4) | 95 (79.8) | |
| Emotional adjustments | ||||
| Yes | 115 (81.6) | 70 (54.3) | 39 (32.6) | <0.001 |
| No | 26 (18.4) | 59 (45.7) | 80 (67.4) | |
| Upsetting behavior | ||||
| Yes | 105 (74.5) | 60 (46.5) | 30 (25.6) | <0.001 |
| No | 36 (25.5) | 69 (53.5) | 89 (74.4) | |
| Changed behavior | ||||
| Yes | 78 (55.3) | 48 (37.2) | 27 (22.5) | <0.001 |
| No | 63 (44.7) | 81 (62.8) | 92 (77.5) | |
| Work adjustments | ||||
| Yes | 83 (58.9) | 46 (35.7) | 29 (24) | <0.001 |
| No | 58 (41.1) | 83 (64.3) | 90 (76) | |
| Financial adjustments | ||||
| Yes | 80 (56.7) | 59 (45.7) | 45 (37.9) | 0.037 |
| No | 61 (43.3) | 70 (54.3) | 74 (62.1) | |
| Overwhelmed | ||||
| Yes | 83 (58.9) | 43 (33.3) | 35 (29.5) | <0.001 |
| No | 58 (41.1) | 86 (66.6) | 84 (70.5) | |
The growing worldwide burden of stroke, both in developed and developing countries, will eventually put more burden on CGs. Financial concerns, lengthy caregiving hours, and emotional stress are all factors that contribute to CG stress, according to our findings. Stroke rehabilitation services should also address CG difficulties, such as practical nursing skills training and counseling sessions, to help reduce CG burden and increase patient recovery. To arrive at some general planning and identify the local situation, planned investigations of CG stress vs. stroke load with a specified procedure at several centers must be conducted.
Author contributions
All the authors have contributed substantially to the preparation of the manuscript and have read the content of the manuscript. There are no conflicts of interest.
Abbreviation
(CG) Caregivers, (UP) Uttar Pradesh, (FES) First-ever strokes, (CSI) Caregivers Strain Index, (OCBS) Oberst Caregiving Burden Scale, (MRS) Modified Rankin Scale, (NIHSS) National Institute of Health Stroke Scale, (CNS) central nervous system, (ADLS) Activities of Daily Living, (CVA) cerebral vascular accident, (BI) Barthel index.
Informed consent
The authors affirm that informed consent was taken from all the participants in the study. An informed consent was obtained from all individual participants for whom identifying information is included in this article. All patients signed informed consent regarding publishing their data.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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