|Year : 2019 | Volume
| Issue : 1 | Page : 3-10
Caregiver's burden of persons with stroke in India: A narrative review
Vimal M Telang
Department of Physiotherapy, All India Institute of Physical Medicine and Rehabilitation, Mumbai, Maharashtra, India
|Date of Submission||03-Jan-2019|
|Date of Acceptance||01-Apr-2019|
|Date of Web Publication||3-Jul-2019|
Ms. Vimal M Telang
Department of Physiotherapy, All India Institute of Physical Medicine and Rehabilitation, Mumbai, Maharashtra
Source of Support: None, Conflict of Interest: None
The caregiver (CG) of a stroke survivor (SS), usually a family member needs to cope up with the challenges of the new role. “Immediate family” who more often than not is the primary CG is included in the “support and relationships” chapter of the environmental factors of the International Classification of Functioning. An insight into the burden of care on the CG in India necessitates a review so as to address it. Publications were overviewed from the search engine “PUBMED” and “Google Scholar” for studies in Indian urban/rural/slum settings either hospital or community based having outcome measures for CG burden, quality of life (QOL), health issues, and CG satisfaction. Interventional studies on CG, hired CG, or with more than one CG were excluded. Seven cross-sectional studies from North, Western, and South India met the inclusion criteria. Sample size ranged from 54 to 201 SSs of duration 28 days to >1-year poststroke. Majority of the CG s were females. The mean score was lowest in physical health and highest in social health in all the studies for WHO-QOL. CG burden was high in all the studies. Burden perceived by female CGs was more than males. The CGs services impacts the treatment outcome hence there is a need to educate and sensitize healthcare professionals to treat CG with dignity and empathy so that caregiving is less stressful. Physiotherapists while being actively involved in rehabilitation of individuals with stroke should train the CG in appropriate home exercises and management, which is ergonomically effective to both SS and CG, cost-effective, and practically feasible so that CG strain and stress can be reduced.
Keywords: Caregiver burden, Quality of life, Stroke survivor
|How to cite this article:|
Telang VM. Caregiver's burden of persons with stroke in India: A narrative review. Indian J Phys Ther Res 2019;1:3-10
|How to cite this URL:|
Telang VM. Caregiver's burden of persons with stroke in India: A narrative review. Indian J Phys Ther Res [serial online] 2019 [cited 2019 Jul 20];1:3-10. Available from: http://www.ijptr.org/text.asp?2019/1/1/3/261993
| Introduction|| |
A caregiver (CG) is defined as a person who lives with the patient and is most closely involved in taking care of him/her at home. “Immediate family” who more often than not is the primary CG is included in the “support and relationships” chapter of the environmental factors of the International Classification of Functioning.
Stroke usually affects at least two people in a family as along with the person with stroke, the person's CG has also to bear the brunt. Given the epidemic proportions of Stroke incidence there is a loss of the much needed productive lives in a country like India.,, Family CGs operate as a part and parcel of the healthcare delivery system. They are involved in a wide range of activities very often for a long indefinite period which previously were provided formally by traditional healthcare providers.,
There is a stroke epidemic situation in India  given the prevalence of stroke estimated to range from 84 to 262/100,000 populations in rural areas to 334 to 424/100,000 populations in urban areas during the past two decades. One-third of stroke survivors (SSs) experience permanent disability. The disability-adjusted life years lost to stroke is expected to increase from 38 million in 1990 to 61 million by 2020 as projected by the WHO.
Health care in India is in a flux, with a desire for universal health coverage for all health conditions., The recurring financial costs on rehabilitative measures, lack of adequate facilities of comprehensive stroke rehabilitation units in rural as well as urban areas leaves the family, especially the CG to shoulder the burden of care. An insight into the type and extent of burden of care on the CGs of SSs in India necessitates a review so as to address this issue.
| Methods|| |
Search on the electronic databases (PubMed and “Google Scholar”) in 2018 using appropriate medical subject heading terms did not identify any review on the said topic in the past 10 years; hence, a narrative review on the CG burden of SSs is attempted.
Data collection and analysis: the searches were done using the following terms: “Stroke” “Caregiver,” “Caregiver burden,” “caregiver satisfaction,” and “Quality of Life (QOL).” Articles included studies published in English from 2012 through 2018 in urban/rural/slum settings either hospital based or community based in India which included outcome measures for CG burden, QOL, health issues, and CG satisfaction. Studies with intervention for CG, hired CG, or with more than one CG were excluded.
| Results|| |
Seven articles met the inclusion criteria. All the studies were cross-sectional studies from community settings as well as those discharged from tertiary care hospitals from different parts of India, namely Nellore (Andhra Pradesh) in the neurology outpatient department of a tertiary care hospital, rural tertiary care center (Western India), Kerala, Ludhiana (Punjab), Karnataka - Chintamani Taluk of Chikkaballapura district, Tertiary care center in Uttarakhand which serves the patients from three neighboring states – Uttar Pradesh (UP), Himachal Pradesh (HP), and Punjab  community setting at district Amritsar and Ludhiana (Punjab).
Sample size ranged from 54 to 201 SSs and their CGs. Duration of stroke ranged from 28 days poststroke to >1-year poststroke. Results of the studies were sorted out as per the commonalities observed in the studies [Table 1].
|Table 1: Caregiver strain in caregivers of stroke survivors in India - details from studies included|
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Majority of the GGs were females. At Nellore, 74.62% of CGs were females. In Kerala of the 150 Stroke Survivors(SS) (116-male and 34-female), spouse was the principle CG for 94.6% patients; in Ludhiana Punjab of the 152 SS 1-month poststroke, 68.4% of CGs were females while 65.8% CGs were from joint families. In Chintamani Taluk of the 150 CGs of SS, 87% were females (wives – 51%, daughters-in-law – 21%, or daughters – 10%). 47.3% of CGs were from nuclear family and 52.7% were from nonnuclear family. In a study at Uttarakhand, of the 120 CGs of age 20–60 years, 60.8% were female CGs and 88.3% were married.
Quality of life
Outcome measures used to assess QOL were self-administered screening instrument WHO-QOL BREF.,,, The lowest mean score was in physical health and highest mean score in social health in all the studies.,,, Variables tested were physical and mental health, social support, financial, and personal problems by a 22-item questionnaire; sleep disturbances reported at night while assisting stroke patients – 54%, physical strain – 65%, 79% experienced increased workload, and 47.5% developed physical health problems after the additional caregiving responsibility.
Outcome measures included BRIEF COPE, CG burden 20-point scale adapted from Burden assessment schedule, modified CG Strain Index (CSI), CSI, and Zarit Burden Interview (ZBI).
Severity of disability/functional status was assessed by functional independence measure (FIM), Barthel Index (BI), and modified Rankin Scale (MRS).
In care giver burden (CGB), females and older CGs bore more financial burden. There was a very high mean Caregiver strain Index (CSI) of 12.6 ± 6.8, with CG strain in 85% individuals  in the study in Ludhiana, Punjab, North India. Financial difficulties, physical strain, family and emotional adjustments, and sleep disturbance contributed to the stress of CGs, giving a high mean CSI score of 11.3 (0.93) in Chintamani Taluka study. About 93% did not receive any training on the care aspect and basic physiotherapy exercises.
In the tertiary care center in Uttarakhand, CGs were in severe burden as the mean score of ZBI was 42.03 ± 11.86. The domains of ZBI score: burden in the relationship (49.84%), emotional well-being (44.48%), role strain (42.87%), finance (42.71%), personal strain (42.28%), and loss of control over one's life (36.53%). The least burden reported by participants was social and family life (35.49%). About 56.67% of participants expressed severe burden while providing continuous care to SSs.
In Punjab, ZBI – mean percentage scores – was (a) in making relationship with other family and friends (40.96%), (b) feeling of loss of control in life (40.44%), (c) personally strained (36.44%), (d) disturbed in emotional well-being (32.14%), (e) social and family life (16.06%), and (f) financial problem (11.5%).
81% of CGs had left their work for caregiving in the Nellore study for caregiving. In the Kerala study, employment situation in SS prestroke was 62.7% whereas poststroke reduced to 20.7%. Whereas in CGs, there was not much significant difference (prestroke – 34.7% and poststroke – 33.3%). CGs predominantly (66%) belonged to poor socioeconomics status  in the study from Karnataka.
In Uttarakhand, 36.7% were graduates, 52.5% were homemakers, and 80.33% had a family income more than Rs. 10,000/month. More than half of the CGs (61%) were not literate while only 2% were graduates in the Karnataka study.
Depression/mood disturbance in caregiver
About 90% of CGs of Nellore study reported forgetfulness, sadness, confusion, anger, and irritability during work. In Ludhiana, 47% of CG reported anxiety and depression in 43% as per the Hospital Anxiety and Depression Scale.
Time spent and burden perceived were more by female CGs (χ2 = 15.199, P = 0.002) than males (χ2 = 11.931, P = 0.018), wives and daughters than other relations. Psychological and physical stress and forgetfulness were equally seen among wives and daughters-in-law. Wives, daughters-in-law, and Group A (BI <75) CGs felt more difficulty in administering medications which could be due to the poor cooperation of the patient. Shoulder pain in the patient was one feature which was felt as a hindrance for Group A patients.
The “r” value of correlation between domains of QOL of patients and CGs in the western Indian study were physical −0.002, psychological +0.037, social −0.005, environmental +0.116.
Correlation of Quality of Life (QOL) of CG with FIM domains of patient's physical health versus mobility was +0.291.
In the multivariate logistic regression analysis, anxiety was the predictor of CG strain in the Ludhiana study.
In CGs – comparison of mean CSI as per BI of SS: (a) with BI (0–20) the mean CSI was 11.59 (0.86), (b) with BI (25–55) the mean CSI was11.09 (0.97), and (c) with BI (60–90) the mean CSI was 11.30 (1.01); the difference of mean CSI score between the 3 groups was not statistically significant (P = 0.063). Mean CSI of those who received training (11.44 ± 0.92) versus those who did not receive training (11.19 ± 0.99) was statistically nonsignificant (P = 0.245). Mean CSI of those CGs in nuclear family – 11.38 ± 1.48 versus mean CSI joint family – 11.24 ± 0.93 was also nonsignificant, P = 0.407.
In SS – comparison of mean CSI scores as per MRS scores of the SS – (a) severely disabled (MRS: 5) – mean CSI 11.44 (1.05), (b) moderately disabled (MRS: 3–4) – mean CSI 11.26 (0.88), and (c) mild disabled (MRS: 0–2) – mean CSI 11.22 (1.02). The difference in the mean CSI scores was not statistically significant (P = 0.267) between the 3 groups.
A significant inverse relationship (Pearson correlation) was obtained between CG burden and CG psychological and environmental domain of QOL (P < 0.05). In physical and social domain of QOL and CG burden scores, there was a negative relationship, but the scores were not significant (P > 0.05).
When CG's characteristics were regressed on ZBI burden, gender (female), private employment status, and total support in care was found significantly associated with burden level *P < 0.05. Family support in care was strongest predictor with 39% of the variance. CG factors (predictors) related to high burden score were younger age, family support, being female, employment status, and CG as only earning member.
A statistically significant association was obtained between employment loss in SS and severity of functional disability, male gender, and presence of limb weakness (P = 0.037, 0.0001, and 0.043, respectively).
| Discussion|| |
Disintegration of the joint family system, especially in the urban areas leaves the nuclear and small families with limited workforce support and hence the caregiving. Cultural nonacceptance, stigma of institutionalization, and heavy pricing of institution care makes caregiving at home by family members an essentiality. This burden is more so on the ladies in the house namely wife, daughter, and daughter-in-law. Small houses with common toilet facilities, architectural barriers compound the problem of caregiving. In the current context of limited healthcare coverage, caregiving by family and nonprofessionals will be an important part of health care in India. This necessitates attention being paid to caregiving and CGs. CGs' emotional health is important not only for the CG but also for the care receiver. The goal should be to minimize the stress of caregiving and maximize the positive feelings of caregiving.
Managing incontinence is time-consuming, physically challenging as also induces shame and low self-esteem. A study on female CG experience in SSs by Tseng et al. found that they undergo a process of chaos, hypervigilance, exhaustion in their life, and later, a gradual change of creating a new life.,
Back pain has been reported as a health complaint in CGs in the earlier studies.,, Sleep debt is a major risk factor for developing musculoskeletal tenderness. Studies have shown that the frequency of poststroke shoulder pain is almost 30%. Shoulder pain and spasticity are among the hidden problems of poststroke rehabilitation, which slows down the recovery and also increases the CG stress.
A meta-analysis done by Adey-Wakeling et al. studying the correlates of physical health of informal CGs concluded that patient's psychological status has the strongest associations with CG health, burden, and depression., Menon et al.'s study showed that CGs has lesser burden in SS with BI >75 probably due to better patient cooperation. Wives and daughters-in-law particularly experienced less cooperation from their patients. The daughters-in-law felt particularly difficult in attending to personal hygiene needs of the patient which included bowel and bladder care which was seen in an earlier study., However, spouses did not feel any hindrance in doing so. This probably reflects the nonbonding between the CG and the care recipient. Daughters-in-law are expected to fulfill the role of CG for their spouse parents. The physical and psychological stress of CG could have a negative impact on the outcome of the patient. A meta-analysis by Campbell et al. revealed that the higher level of behavioral problems exhibited by the care recipient correlated with poor health of the CG., CGs neglecting their own health lead to depression. The stroke severity of the patient was an important contributor with 20% of CGs attending to severe stroke being deprived of social life compared to 4% with independent patients. 80% of the CGS reported that the financial condition declined after the incidence of stroke. However, there was no difference between stroke severity and gender. Another positive finding was the developing confidence in the CGs in undertaking emergency management which has been noted in the previous studies.,
Multiple factors such as financial worries, emotional stress, and long caregiving time duration were the key factors for burden and increasing strain among CGs., Among all the four domains of QOL, physical health was the most affected and social health was the least affected in all the studies. Results are corresponding with other studies from India , and other countries., All the components of ZBI had a significant negative relationship with psychological, social, environmental, and physical (except with role strain) domain of QOL of CGs.
As per Friedemann,,,, inorder to strive towards harmony, behavior patterns noticed that are acted out in daily life, are organized into four process dimensions: (a) system maintenance in circumstances of care giving, involves the work of caring for the SS and the organization of tasks, time schedules, work assignments, patterns of communication, and seeking help from outside. They also include those tasks CGs do to keep up their own well-being, namely rest, sleep, social connections, health, and entertainment. (b) Coherence indicates being at peace with oneself which can be achieved by CGs through a variety of methods for a positive attitude and vitality to prevent anxiety, depression, exhaustion, or feelings of inadequacy. (c) Individuation, is finding a purpose in one's situation and life by giving care, finding information about stroke, communicating with people, reaching out to religion or spirituality to find worth in their caring. Individuation leads to (d) System change as CGs realize the impact of their new responsibilities, adjust their priorities, change attitudes, and values, thus they assume new behavior patterns.
The indirect victims of stroke are the CGs who often take on the role under sudden and extreme circumstances, with minimal preparation, inadequate guidance, and scant support from healthcare systems. Given the heavy burden of stroke, there is a dire need to bring about an organized predischarge training of the CGs in assisting SSs in activities of daily living (moving, handling, transferring patient from bed to chair, chair to toilet), provision of nursing care (feeding), and communication (verbal and nonverbal). Such training will serve a two-fold purpose by reducing the anxiety and stress in CGs while also improving the nature of care and the QOL of SSs. A qualitative study of CGs of SSs found that CG stress begins soon after the initiation of care giving and lasts for more than a year after the stroke. In addition, they found CGs to report psychological distress two and a half times more than non-CGs. Mental and emotional strain in CGs have been linked to poor outcomes for SS. Poor physical functioning, fewer social contacts, and more emotional distress than other CGs , were also reported by CGs who subjectively reported a high amount of strain, alongwith the dissatisfaction with health professionals.
More importantly, attention should be placed on the physical and psychological needs of these CGs. Appropriate handling techniques and adequate emotional support will help to improve CGs' effectiveness in their new caregiving roles. It is also important for all healthcare professionals to involve adequate teaching skills for CGs in their educational plan to anticipate unbeaten rehabilitation of stroke patients.
A randomized controlled trial by Kalra et al. in a Stroke Rehabilitation Unit in the United Kingdom on 300 stroke patients and their care givers reported that, at follow-up after 1 year, the costs and CG burden reduced while psychosocial outcomes in care givers and patients improved in those CGs who received pre-discharge training. Besides, the costs of care over 1 year were significantly lower for patients whose CGs had received training. Along with caregiving burden, anxiety or depression was significantly less, with a higher QOL in the trained care givers. CG training did not influence patients' mortality, institutionalization, and disability. However, patients reported less anxiety and depression and better QOL in the CG training group.
No difference between intervention and usual care group in CG strain or in anxiety was reported (P < 0.005) of Family-led rehabilitation after stroke in India (ATTEND): a randomized controlled trial when results were viewed in the context of early supported discharge after stroke of duration <1 month. They commented that as intervention group received only about 30 min of training in daily activities as against conventional western rehabilitation which is usually associated with greater daily therapy time (1–2 h), it might not have been sufficient (in time and content) to deliver effective family rehabilitation. They suggested that the effects of shifting task to healthcare assistants or team-based community care should be taken up as a future avenue of research.
| Conclusion|| |
While CG is doing the noble and strenuous job of caregiving, the CG also deserves care to continue the role of caregiving in a lesser stressful situation. There is a need to educate and sensitize healthcare professionals to treat CG with dignity and empathy considering that the CGs services impacts the treatment outcome. Psychological counseling to the CGs regarding the emotional states of the SS as well as counseling to the SS regarding the services offered to them by CGs is necessary. Regular health checkup of CG also needs to be done along with the SS. Physiotherapists while being actively involved in rehabilitation of individuals with stroke should train the CG in appropriate home exercises and management, which is ergonomically effective to both SS and CG, cost-effective, and practically feasible so that CG strain and stress can be reduced.
I thank KLE Academy of Higher Education and Research, Institute of Physiotherapy, Belagavi - Karnataka for inviting me to write the article for their first issue.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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