The Cost of Compassion: Caregiver Fatigue Associated with Caring for Persons with Disability in a Rural Population in India

Abstract

Caregiver fatigue is common among caregivers of patients with disabilities and compromises the health of caregivers and the disabled alike. There is no community-based data from India on the burden of caregiver fatigue. Therefore, we aimed to determine the prevalence of caregiver fatigue among family members of patients with disabilities, assessing the association of socio-demographic factors related to caregivers, care recipients, and the nature of disability with caregiver fatigue. We performed a cross-sectional study in Kaniyambadi, Vellore, interviewing 63 disabled people and their caregivers. Demographic details and details of caregiving were recorded. The severity of disability was assessed using the World Health Organization Disability Assessment Schedule 2.0, and caregiver fatigue was assessed using the American Medical Association Caregiver Self-assessment Questionnaire. Caregivers were predominantly female (76.2%), most frequently parental (41.3%), followed by spousal (30.2%). Moreover, 71.4% of caregivers were not gainfully employed. The most common disability was physical and mobility impairments followed by brain injuries. Caregiver fatigue occurred in 71.4% of caregivers. Characteristics associated with caregiver fatigue were female sex, parental relationship, and >6 h daily spent caregiving. Caregivers of male patients and individuals with >50% disability were more likely to develop caregiver fatigue. Caregiver fatigue was noted in a majority of caregivers, associated with female and parental caregivers, younger care recipients with severe disabilities, and increased time spent caregiving. Several social and economic factors unique to our country necessitate further study. Practical measures include telephonic consultations, counseling groups, and changes to daily interactions between healthcare workers and caregivers.

INTRODUCTION

Caregiver fatigue is defined as the discomfort for the caregiver resulting from necessary caring tasks or restrictions.[1] Literature from the West performed on subgroups of patients, including those with dementia or spinal cord injury[2,3,4,5] shows 53% of caregivers battle fatigue,[3] and 64% develop poor sleep.[4] Spousal caregivers report poorer quality of life scores than those of their disabled partners.[6] In the Indian cultural setting, family members are usually the primary caretakers of debilitated individuals. This, in turn, aggravates familial disharmony and conflict, compromising the quality of care afforded. As per an analysis of the most recent National Family Health Survey 5 data, 4.52% of the Indian population is disabled.[7] In a country where poverty and disability perpetuate each other to create a vicious cycle, families of disabled patients cannot afford nursing homes or professional nurses, and hence the duty of caregiving falls on one or a few family members.

As medical advances continue to raise the life expectancy of patients living with chronic disabling conditions,[8] it is apparent that the “second victim” in this scenario is the caregiver.[2] Despite this, there are no data to suggest the scale of caregiver fatigue in India. The association of factors including sociodemographic and economic status, nature, or duration of the disability on the occurrence of caregiver fatigue is largely unknown. Therefore, we aimed to determine the prevalence of caregiver fatigue amongst caregivers of patients with disabilities, with secondary objectives to assess the association of socio-demographic factors related to caregivers, care recipients, and the nature of disability with caregiver fatigue.

SUBJECTS AND METHODS

We performed a cross-sectional study in the Kaniyambadi block of Vellore, a large district of Tamil Nadu, between October 1 and November 31, 2019.

Recruitment and definition of caregivers

“Disability” was defined as any restriction or lack of ability resulting from impairment to perform any activity within the range considered normal for a human being, as proposed by the International Classification of Impairments, Disabilities, and Handicaps.[9] A “caregiver” was defined as an unpaid person who helps with physical care or coping with disease.[10] We obtained a list of disabled patients from the Community Health and Development database across a random list of 20 villages in the Kaniyambadi block to eliminate bias due to socioeconomic factors. A pilot study comprised an interview with 10 families from the random list. Based on our pilot data, a prevalence (P) of caregiver fatigue of 70% was assumed. Using the formula N = 4*P (1 −P)/d² and an acceptable error (d) of 15%, we required a sample size of 37 patients.

Among the 122 disabled patients identified, 21 patients migrated to another district, 17 succumbed to their illness, 14 did not have a caretaker, and seven did not consent to the interview. A primary caregiver was established in each case; thus, we analyzed data from 63 caretakers.

Assessment of severity of disability and caregiver fatigue

Patients’ severity of disability was assessed using the World Health Organization Disability Assessment Schedule (WHODAS) 2.0.[11] Caregiver fatigue was assessed using the Caregiver Self-assessment Questionnaire, developed by the American Medical Association, to screen for caregiver stress.[12] The questionnaire has been reported to be 98% sensitive for depression among caregivers.[13] The questionnaire was translated into the Tamil language by a native Tamil-speaking author, which was the primary language of the entire study population. Medical interns performed caregiver interviews. The team was accompanied by the local health aides or village health nurses (a cadre of community health workers equivalent to the multipurpose health workers at the national level). An initial non-formal interview included all the family members, following which we established a primary caregiver. Following consent from the patient and caregiver (and assent in patients aged less than 18 years of age), details regarding caregiving and the Caregiver Self-Assessment Questionnaire were administered in a private area of the house or locality. During the interview with caregivers, we recorded details of the disability, including the diagnosis and duration of disability, as well as socio-demographic details of the patient and caregiver, such as occupation and monthly income. We obtained details of caregiving, including the relationship of the caregiver to the patient, the availability of other caregivers in the family, time spent caregiving (in percentage of daytime), and monthly caregiving expenses.

Statistical analyses

Data were entered into an electronic database via EpiData and analyzed with SPSS software. Descriptive statistics were calculated for all variables of interest for the entire population as well as stratified by caregiver fatigue. Exposure variables, outcome variables, and covariates were expressed as numbers and percentages for categorical variables. A Chi-square test or Fisher’s exact test was performed to look for an association between the outcome and various risk factors. The means of continuous variables such as age were analyzed with the Student’s t-test. A P value < 0.05 was considered significant.

RESULTS

Characteristics of caregivers [Table 1]

Table 1.

Characteristics of the caregivers and disabled people interviewed

Characteristic	Number of caregivers/patients
Caregivers (n=63)
Mean age (years)	47.3±15.8
Female sex	48 (76%)
Relationship with the disabled
Parental	26 (41.2%)
Spousal	19 (30.1%)
Child	6 (9.5%)
Non-blood relations	6 (9.5%)
Distant family	4 (6.3%)
Sibling	2 (3.2%)
Employment
Not gainfully employed	45 (71.4%)
Semi-skilled occupation	8 (12.7%)
Unskilled occupation	8 (12.7%)
Skilled occupation	1 (1.6%)
Clerical occupation	1 (1.6%)
Mean income	6,976 ₹
% of income spent on caregiving	9.5%
Mean time spent on caregiving (hours)	5.74
Disabled people (n=63)
Mean age (years)	45.7±20
Female sex	33 (52%)
Type of disability
Physical impairment	23 (36.5%)
Traumatic and non-traumatic brain injury	14 (22.2%)
Impaired vision	8 (12.7%)
Impaired hearing	8 (12.7%)
Psychiatric illness	4 (6.3%)
Cognitive/learning deficits	3 (4.8%)
Spinal cord injury	3 (4.8%)
Mean duration of disability (years)	29.2

Our series of 63 caregivers was predominantly female (N = 48, 76%). The mean age of the study participants was 47.3 ± 15.8 years, ranging from 15 to 80 years of age. The most common relationship of caregivers to their patients was parental (N = 26, 41.2%), followed by spousal (N = 19, 30.1%), child (N = 6, 9.5%), non-blood relations (N = 6, 9.5%), distant family (2^nd degree or greater: N =4, 6.3%), and siblings (N = 2, 3.2%). Almost two-thirds (N = 39, 61.9%) were the sole caregiver in the household. Most caregivers were not gainfully employed (N = 45, 71.4%), while eight patients each performed semi-skilled and unskilled occupations, and one each had a skilled and clerical occupation. The median monthly income of caregivers was ` 10,000 (interquartile range: 3,500–15,000). A mean of 9.5% of their monthly income was spent on caregiving-related expenses. The mean time spent on caregiving was 5.74 h, ranging from 30 min to 24 h. One-fourth of caregivers (N = 16, 25.4%) had comorbid illnesses: essential hypertension in nine, diabetes mellitus in six, osteoarthritis in five, and bronchial asthma in three.

Profile of disabled persons [Table 1]

Care recipients ranged from four years to 90 years old, with a mean age of 45.7 ± 20 years. Thirty were male (48%), while 33 were female (52%). The most common form of disability was physical impairment (N = 23, 36.5%), followed by traumatic and non-traumatic brain injury (N = 14, 22.2%), impaired hearing (N = 8, 12.7%), impaired vision (N = 7, 11.1%), psychiatric illnesses (N = 4, 6.3%), cognitive/learning deficits (N = 3, 4.7%), and spinal cord injury (N = 3, 4.7%) [Figure 1].

Figure 1.

Prevalence of caregiver fatigue across various types of disabilities

The mean duration of disability was 29.2 ± 11.4 years, ranging from two to 90 years.

Prevalence and factors associated with caregiver fatigue

Forty-five of 63 caregivers had caregiver fatigue (71.4%, confidence interval [CI]: 59.6–82.4%). Female sex was associated with caregiver fatigue (83.3% of female caregivers vs. 33.3% of male caregivers had caregiver fatigue, odds ratio [OR]: 10, 95% CI: 2.69–37.2, P < 0.001), as was parental relationship to the recipient (88.5% of parental caregivers vs. 59.5% of non-parental caregivers had caregiver fatigue, OR: 5.23, 95% CI: 1.33–20.6, P = 0.012), more than six h per day engaged in caregiving (OR: 3.5, 95% CI: 1.1–11.2, P = 0.034), and greater than 10% of monthly income spent on caregiving expenses (OR: 4.3, 95% CI: 1.3–14.9, P = 0.019) [Table 2]. Caregivers of patients aged less than 30 years were more likely to have caregiver fatigue (89.5% of caregivers of patients <30 years of age vs. 63.6% of caregivers of patients ≥30 years of age had caregiver fatigue, OR: 4.86, 95% CI: 1.3–23.79, P = 0.037). Among various disabilities, caregiver fatigue occurred among all caretakers of patients with spinal cord injuries (3/3), 7 of 8 with impaired vision, 6 of 8 with impaired hearing, 3 of 4 with psychiatric illness, 2 of 3 with cognitive and learning impairments, and 14 of 23 with physical impairments. The severity of disability was associated with the presence of caregiver fatigue (88% of caregivers of patients with WHODAS >50% disability had caregiver fatigue vs. 60.5% of caregivers of patients with WHODAS <50% disability, OR: 4.78, 95% CI: 1.2–18.8, P = 0.018).

Table 2.

Association of various characteristics of caregivers and disabled persons with the presence of caregiver fatigue

Characteristic	Caregiver fatigue		OR (95% CI)	P
	Present (n=45)	Absent (n=18)
Caregiver
Gender
Female	40 (88.8%)	8 (44.4%)	10 (2.68–37.23)	<0.001
Male	5 (11.2%)	10 (55.6%)
Age >60 years
Yes	9 (20%)	5 (27.8%)	0.650 (0.184–2.3)	0.502
No	36 (80%)	13 (72.2%)
Parental relationship
Yes	23 (51.1%)	3 (16.6%)	5.227 (1.328–20.58)	0.012
No	22 (48.9%)	15 (83.4%)
Unskilled occupation and below
Yes	41 (91.1%)	12 (66.7%)	4 (0.796–20.02)	0.076
No	4 (8.9%)	6 (33.3%)
Time spent >6 h
Yes	26 (57.8%)	4 (22.2%)	4.857 (1.1–23.787)	0.037
No	19 (42.2%)	14 (77.8%)
Money spent on caregiving >10% of income
Yes	29 (64.4%)	4 (22.2%)	6.182 (0.740–51.618)	0.061
No	16 (35.6%)	14 (77.8%)
Disabled
Gender
Male	23 (51.1%)	7 (38.9%	1.643 (0.540–5.002)	0.380
Female	22 (48.9%)	11 (61.1%)
Age <30 years
Yes	17 (37.8%)	2 (11.1%)	4.857 (1–23.787)	0.037
No	28 (62.2%)	16 (88.9%)
Duration of disability <10 years
Yes	10 (22.2%)	1 (5.5%)	5.5 (0.655–46.203)	0.085
No	35 (77.8%)	17 (94.5%)
Disability >50% WHODAS
Yes	25 (55.5%)	4 (22.2%)	4.783 (1.215–18.830)	0.018
No	20 (44.5%)	14 (77.8%)

DISCUSSION

Factors influencing the development of caregiver fatigue

We noted that female, parental caregivers were more likely to develop fatigue. Despite largely similar experiences to women in the West, women in India face more somatic symptoms due to suppressed anxiety and share fewer domestic responsibilities with their spouses.[14] This is reflected in the observation that homemakers in India have 20–30% greater stress and anxiety than working women.[15] In general, women’s occupations in India tend to be the most laborious, low-skilled, and poorly compensated.[16] The addition of the responsibilities of caregiving, compounded with the loss of psychological and economic stability due to a family member’s disability, therefore disproportionately impacts female caregivers.

A study in Korea found a positive correlation between caregiving stress and depression, as measured by the validated Korean Depression Scale.[17] Notably, older female spousal caregivers, who spent more time and money on caregiving, experienced the highest rates of depression.[17] Caregivers of young, male patients with higher grades of disability and spinal cord injury were also more likely to be depressed. Corroborating several of our observations, these data highlight the similarities in the poor mental health of caregivers across diverse geopolitical landscapes.

A report of 2,42,952 adults from 70 low- and middle-income countries based on self-reported World Health Survey data revealed a positive association between informal caregiving and physical multimorbidity, ranging from angina to diabetes. The tendency towards increased risk of physical morbidity was pronounced in younger caregivers but also noted in the elderly caregivers, who were often afflicted by several pre-morbid conditions.[18] Combined with the psychological morbidity associated with caregiving, including depression and low self-esteem,[3,4,17] it has resulted in a significantly decreased quality of life for caregivers.[6] However, caregiving in sustainable conditions is a largely positive experience, with perceived benefits including a sense of personal accomplishment and gratification and improved mental health and relationships.[19,20,21]

Practical approaches to reducing the burden of caregiving in the community

Support programs often focus solely on the patient and rarely address the health of the caregiver despite evidence that even small-scale telephone-based programs enhance caregiver knowledge and skill.[22] Over 70% of dementia caregivers report that periodic sessions with four-to-six participants and trained moderators via teleconferencing are valuable to them.[23,24] Peer support groups of caregivers of elderly dementia patients are known to provide positive emotional support while relieving negative perceptions.[25] A randomized trial assessing the impact of up to six individual and family counseling sessions among spousal dementia caregivers significantly improved self-rated health scores and symptoms of depression, with telephonic follow-up maintaining effects for at least two years post-intervention.[26] The same intervention was also beneficial to dementia patients, reducing nursing home placement by 28.3%.[27] In the rural Indian scenario, a disabled patient with overburdened caregivers is consigned to abandonment, as evidenced by the 14 patients in our series who did not have a caregiver. This is likely an underreported statistic, and the true prevalence of abandonment may be far greater. Despite these benefits,[26] it is uncommon among general medical practice to inquire about the mental or physical health of a caregiver of a disabled patient. In all cases in our series, our interview and informal communication following the interview were the first instances, where a healthcare worker broached the subject of caregiver fatigue with the caregivers. Irrefutable community-based and representative data about the scale and impact of caregiving stress among the diverse population of our country will be essential to producing change.

There is an emerging trend towards the practice of “respite care,” where families arrange for an alternative care arrangement, providing them time away from their responsibilities.[28] While this is effective, the added cost and trained human resources required make it challenging to adopt in India.[29] The establishment of low-cost facilities for long-term care at the primary and secondary healthcare levels may help in this regard.

Our report suffered from some potential biases; despite villages are selected randomly, all caregivers in this series lived in rural settings, and none employed assistance with caregiving. Therefore, we were unable to assess the protective impact of higher socioeconomic status and the assisted living services that are more accessible in urban locations. Our observations are also limited by the small sample size, resulting in wide CIs.

CONCLUSIONS

This report demonstrates a high prevalence of caregiver fatigue in the Indian population. Caregiver fatigue afflicted 71.4% of caregivers, associated with female, parental caregivers spending, ≥6 h a day on caregiving. It was also associated with younger care recipients with severe disabilities.

Key messages

This paper represents a diverse range of disabilities in the Indian population, ranging from physical impairment to psychiatric illness. Our observation that 71.4% of all caregivers are diagnosed with fatigue highlights the urgency and scale of intervention required to alleviate caregiver fatigue in the community.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.