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  Table of Contents  
ORIGINAL ARTICLE
Year : 2015  |  Volume : 52  |  Issue : 1  |  Page : 146-151
 

Family caregivers' burden: A hospital based study in 2010 among cancer patients from Delhi


1 Department of Community Medicine, UCMS and GTB Hospital, Delhi, India
2 Department of Psychiatry, UCMS and GTB Hospital, Delhi, India

Date of Web Publication3-Feb-2016

Correspondence Address:
S Lukhmana
Department of Community Medicine, UCMS and GTB Hospital, Delhi
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0019-509X.175584

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 » Abstract 

Background: A large number of patients with chronic diseases like, cancer are cared for in homes by the family members in India. The vital role that these family members play as “caregivers” is well recognized, however, the burden on them is poorly understood. Aims: To assess burden and to determine the predictors of burden on family caregivers of cancer patients. Setting And Design: A cross-sectional, hospital based study conducted in National Capital Territory of Delhi. Materials And Methods: 200 family caregivers of cancer patients were selected by systematic random sampling and interviewed using standard, validated Hindi version of Zarit Burden Interview. Statistical Analysis: Univariate analysis and multivariable logistic regression were carried out using Statistical Package for the Social Sciences software (version 17.0). Results: The study population consisted of 90 (45%) males and 110 (55%) female caregivers aged 18-65 years. 113 (56.5%) caregivers reported no or minimal burden while 75 (37.5%) caregivers reported mild to moderate burden. Using logistic regression marital status, education and type of family of caregivers, occupation of cancer patients and type of treatment facility were found to be the predictors of burden on caregivers. Conclusion: In view of the substantial burden on family caregivers coupled with lack of adequate number of cancer hospitals, there is a public-health imperative to recognize this important group. All levels of health-staff in cancer hospitals in developing countries should be sensitized to the various burdens faced by family caregivers.


Keywords: Burden, cancer, family caregivers, oncology, predictor


How to cite this article:
Lukhmana S, Bhasin S K, Chhabra P, Bhatia M S. Family caregivers' burden: A hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer 2015;52:146-51

How to cite this URL:
Lukhmana S, Bhasin S K, Chhabra P, Bhatia M S. Family caregivers' burden: A hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer [serial online] 2015 [cited 2019 Aug 25];52:146-51. Available from: http://www.indianjcancer.com/text.asp?2015/52/1/146/175584



 » Introduction Top


Evolution of cancer in India mimics the pattern of growth in other European and American countries. National cancer registry of India states the causation of cancer to be multi-factorial, burden to be multi-dimensional and treatment, multi-disciplinary. There are nearly 2.5 million cases of cancers in India with almost 900,000 cases diagnosed and 400,000 deaths occurring every year.[1] Age adjusted incidence of cancer in urban areas is estimated to be 106 per 100,000 population in males and 110 per 100,000 population in females. The incidence of cancer in India has kept pace with increasing urbanization and adoption of western lifestyle and dietary practices. However, there has not been a commensurate increase in the number of specialized cancer hospitals. Therefore, a large number of such patients are cared for in homes by the family caregivers.

While providing care and treatment, the entire focus is on the patient and the need and demand of these family members and primary caregivers are often overlooked and neglected. The vital role played by such family caregivers is well recognized but burden on them is poorly understood.[2] Caregiver burden is considered a “multi-dimensional biophysical reaction resulting from an imbalance of care demands relative to caregiver's personal time, social roles, physical and emotional states, financial resources and formal care resources given the other roles they fulfill.”[2] Numerous questionnaires have been developed to quantify caregivers' burden while caring for cancer patients but Zarit Burden Interview (ZBI) is the most widely referenced scale in studies of caregiver burden. Caregiver burden has been described by Zarit et al. as a state resulting from necessary caring tasks or restrictions that cause discomfort for the caregiver.[3] Family caregivers experience a multitude of strains, due to the many aspects of life that are affected by cancers, including communication, nursing care, financial concerns, and emotional conflicts.[4] Caregiver burden outcome depends upon a host of variables. Studies done in different countries have shown the association of burden on family caregivers of cancer patients with many socio-demographic factors like age,[5] gender,[5],[6],[7] relationship to the patient,[5] employment,[5] income of caregivers [8],[9] lack of family and social support,[5],[9],[10] duration of caregiving,[11] disruption in daily routine [10],[12] and stage of disease.[6] Assistance in activities of daily living and instrumental activities of daily living in cancer patients also have significant impact on caregivers' burden.[9],[10],[13] Unfortunately, providing care to a seriously ill family member can compromise the caregiver's overall health or physical, psychosocial, and spiritual well-being. Some studies have linked caregiving to a broad range of health outcomes including cardiovascular disease, impaired immune function, hyperinsulinemia and increased mortality.[14],[15] A recent meta-analysis demonstrated that caregivers had worse physical and mental health than their non-caregiving peers.[16] With little or no formal training, family caregivers are called upon to assume shifting roles ranging from day-to-day responsibilities for management of symptoms and side effects, medication administration, transportation to physician, treatment appointments, dealing with fear and uncertainty in diseases like cancer and watching the patient suffer.[17] Needs and demands of patient vary at different points in the trajectory of the disease, and so does the caregiver's burden. Given the magnitude of services provided and the sacrifices made by family caregivers, the adverse consequences of caregiving have emerged as a major public-health concern. With this aim, the present study was conducted to assess the burden and determine the predictors of burden in family caregivers of cancer patients.


 » Materials and Methods Top


A cross-sectional study was conducted in two randomly selected cancer hospitals in National Capital Territory of Delhi. Lists of government and private hospitals, providing all three modalities of treatment for cancer, namely surgical, chemotherapy and radiotherapy as well as providing both in-patient and day-care facilities, were obtained from Directorate of Health Services, Delhi. Two hospitals were selected randomly using draw of lots.

The study population comprised of family caregivers, which were defined as, any lay person, who was unpaid and willing to participate, whom the patient himself/herself identified as being in a close supportive role, and as sharing most in his/her illness experience.

Relying on prevalence of burden on family caregivers of cancer patients as mentioned by Kim et al.,[18] to be 67.3% with 95% confidence level and a relative precision of 10%, using Epi info software, a sample size of 192 was calculated. However, to account for factors like non-co-operation and incompleteness of data recording, a total of 200 caregivers were studied.

Using systematic random sampling, 200 cancer patients were selected from outpatient departments (medical oncology, surgical oncology and radiotherapy), wards (surgical, gynecologic, orthopedic and ENT) and radiotherapy wings from two hospitals (100 patients from each hospital). Family caregivers providing care to these patients and nominated by patients themselves were interviewed. In case the caregiver nominated by the patient was not available on the day of interview, he/she was revisited subsequently. However, if the caregiver was not available for three consecutive visits, he/she was excluded from the study and was not interviewed thereafter.

Ethical clearance was obtained from the Institutional Review Board. A written permission was obtained from the designated administrators of the study hospitals. The aim of the study was explained to all study subjects and a written informed consent was taken before the interview. Informed consent and thumb impression was taken from the caregivers who could not read or write. Since the study centered around eliciting sensitive information about their experiences as caregivers, sufficient time was dedicated to each patient and his/her caregiver. Caregivers were interviewed in privacy in a separate room in the hospital. Subjects were assured of complete and strict confidentiality of the information collected. The instruments used in the study are as follows:





  • ZBI [3] which is a standard, validated tool was used to assess the burden on family caregivers (Cronbach's alpha = 0.92). It is a 5-point (0-4; a higher score denotes higher burden), 22-item Likert scale, which assesses five main domains of burden namely health, psychological well-being, finances, social life and relationship with the patient. The final scores range from 0 to 88. It is further stratified into four categories, that is, a score of 0-20 indicates no or minimal burden, 21-40 mild to moderate burden, 41-60 moderate to severe burden and 61-88 indicates severe burden. This scale has been previously used in studies to assess burden on caregivers of patients with cancers,[2] Alzheimer's [19] and stroke [20] in both developed and developing countries. Keeping in mind the meaning, intention and context of questionnaire, Hindi translation of ZBI was done by expert Hindi scholars and back translation was done to establish translational validity. ZBI was self-administered. However, patients who were unable to read or write were interviewed by the first author
  • A pre-tested, semi-open-ended questionnaire comprising of detailed socio-demographic profile of caregivers and patients and disease profile of the patients was also used. Pre-testing was done on 5% sample and the final proforma was modified accordingly.


Both the questionnaires were administered to the sampled caregivers.

The information so collected was fed into a computer based spreadsheet using Microsoft Excel software. Statistical analysis was done using Statistical Package for the Social Sciences [SPSS, Chicago, IL] software version 17.0. Univariate analysis and multi-variable logistic regression were carried out taking “burden on caregivers” as dependent variable. The categories of dependent variable were collapsed into two so as to have a sizeable sub-sample in each category that is: (i) “No” (indicating no or minimal burden) with a score of 0-20, (ii) “Yes” (indicating mild to severe burden) with a score of >21. Independent variables with P < 0.25, as recommended by Hosmer and Lemeshow, were entered into the regression model using backward elimination method.[21] Variables with P > 0.1 were removed from the model. Hosmer and Lemeshow test was used for goodness of fit of the model. This model could correctly classify 69% of the cases.


 » Results Top


Responses were obtained from 200 caregivers of patients, comprising of 90 (45%) males and 110 (55%) females, with age ranging from 18 to 65 years (mean = 40 years). [Table 1] depicts the socio-demographic profile of family caregivers and patients. 103 (51.5%) caregivers were unemployed and 54 (27%) were illiterates. 115 (57.5%) caregivers were spouse of the patients and 50 (25%) were married or unmarried children of the patients. 82 (41%) caregivers were living in joint families. Among cancer patients 39% were illiterate and 40% were unemployed.
Table 1: Socio-demographic profile of caregivers and care recipients (n=200)

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The most common cancers among the sampled patients were breast cancer (10.5%; 21), endometrial cancer (8%; 16), cervical cancer (6.5%; 13) and intestinal cancer (6.5%; 13). Chemotherapy was the most common standalone modality of treatment received by patients (23.5%; 47) followed by surgery (17.5%; 35) and radiotherapy (7.5%; 15) alone. Almost, half (49%; 98) of the patients received treatment in in-patient facility.

In addition, we also found that 93 (46.5%) patients had one or more comorbidities like hypertension (13; 6.5%) and tuberculosis (9; 4.5%). 26 (13%) patients reported a family history of cancer. 72 (36%) patients smoked tobacco, 10 (5%) used smokeless tobacco and 21 (10.5%) consumed gutkha/pan masala before being diagnosed with cancer. Seventeen percent caregivers in our study had one or more comorbidities like hypertension (6.5%), diabetes mellitus (6%) and tuberculosis (4.5%).

176 (88%) caregivers devoted more than 4 hours a day for caregiving. 111 (55.5%) subjects resided within 20 km radius of hospital from where they received treatment. 70 (35%) caregivers accompanied patient to the hospital daily for treatment. 160 (80%) caregivers stayed with the patient for a variable duration of 1-15 days, while the patient was hospitalized. Out of these, 132 stayed for over 15 days. 86 (43%) caregivers missed work due to patient's illness. Of them 20 (10%) caregivers had to miss work for the entire month. Three caregivers even had to give up their jobs for the patient's caregiving.

Burden among family caregivers was calculated using Zarit Burden Inventory [Table 2]. 113 (56.5%) caregivers reported no or minimal burden while 75 (37.5%) caregivers reported mild to moderate burden. Only 2 (1%) caregivers reported severe burden. Mean burden scores as assessed by ZBI was 20 ± 11 (median = 18). On univariate analysis, a statistically significant burden was seen among caregivers of patients who were receiving treatment in both in-patient and day-care (P = 0.041) as compared to caregivers of patients who were receiving treatment in either of these [Table 3].
Table 2: Burden among family caregivers as per Zarit Burden Interview (n=200)

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Table 3: Association of burden on caregivers with caregivers' (and patients') characteristics

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Independent variables with P < 0.25 on univariate analysis were entered into the multiple regression models using backward elimination method [Table 4]. Variables such as education of care recipient, duration of symptoms, duration of disease since diagnosis, and money spent by caregivers were found to be non-significant (P > 0.1) and hence, were removed from the model. Variables such as marital status, type of family of caregivers, occupation of care recipient, and type of treatment facility were found to be predictors of burden on family caregivers.
Table 4: Predictors of burden on family caregivers

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 » Discussion Top


56.5% family caregivers had no or minimal burden due to caregiving and 43.5% had burden varying from mild to moderate to severe while caring for cancer patients. Mean scores as assessed by ZBI in our study were 20 ± 11 (median = 18). Comparable ZBI scores of 18 ± 1 (median = 17) and 18 ± 5.5 (median = 17) have been shown by Higginson et al.[22] in UK and Goldstein et al.[10] in Connecticut, USA respectively. A longitudinal study in Ontario, Canada also showed similar levels of burden experienced by caregivers at the start of palliative period with ZBI score of 19.4, which significantly increased to 26.2 (P = 0.02) at the start of terminal period.[2] ZBI scores as high as 29.1 ± 12.8 (median = 25) have been reported among caregivers of cancer patients in an urban African setting [23] and median scores as low as 5 have been reported from Chicago, USA.[9]

Despite caring for cancer patients 56.5% caregivers reported no or minimal burden, needs to be seen in context of Indian subcontinent like India and neighboring Pakistan [24] where family caregiving is not seen as a distinct role. Majority of caregivers in our study were spouses, married or unmarried children or parents of the patients and since these caregivers are related to the patient, their caregiving is commonly perceived to be an obvious extension of their roles in these relationships. Our societal norms are such that taking care of the diseased spouse is considered the duty of the otherwise healthy partner. Cultural norms dictate that a good relationship between parents and their adult children is fostered throughout a lifetime. Parents sacrifice for their children and adult children are obliged to take care of their elders when either of them is diseased and therefore, they continue to look after the ill member without any apparent complaints or feeling burdened.

Seventeen percent caregivers in the present study had one or more comorbidities. The commonest comorbidities were hypertension (6.5%), diabetes mellitus (6%) and tuberculosis (4.5%). However, owing to the cross-sectional study design, their temporal association with the burden could not be ascertained. Other studies have also shown that family caregivers suffer from a number of diseases such as cardiovascular disease and hyper-insulinemia [14],[15] and are themselves at high risk of admission for institutional care and premature mortality.[25] Some clinicians have preferred the term “hidden patients” for family caregivers of terminally ill patients.[26]

In the present study, caregivers residing in a nuclear family were 1.9 times more likely to have burden of caregiving than those staying in joint family. This factor has not been much researched upon, because available studies are largely from the developed world where joint families are a rarity. A joint family consists of a number of married couples and their children who live together in the same household, where all the men are related by blood and the women of the household are their wives, unmarried girls and widows of the family kinsmen.[27] India is on the verge of many transitions including a transition toward rapid urbanization with concomitant nuclearization of families. The task force in a nuclear family usually comprises of married couple and/or their children. When one of the family members in a nuclear family falls sick with a disease like cancer, the entire responsibility including domestic household chores, child-rearing, concomitant professional strains, managing finances coupled with the mammoth task of caregiving falls on the otherwise healthy caregiver. On the other hand, the structure of joint family is such that roles are defined for each member of the family. During a catastrophic period, when a member develops a chronic/terminal illness and is unable to take care of him/herself or is in need of assistance, joint family acts as a buffer and the burden is shared by other members. Since, there are more than one member to take care of the patient, therefore, the brunt of caregiving does not fall on a single person but is shared by all. These factors could have led to a lower burden among caregivers residing in joint families in our study.

In our study, married caregivers were 2.5 times more likely to be burdened than “other” (comprising of unmarried, widower, and divorced) caregivers, which is in stark contrast with other studies where unmarried caregivers have been reported to be negatively affected by their role of caregiving.[12],[23],[28] The higher caregiver burden among married subjects in our study could probably be attributed to the fact that married members are expected to assume more responsibility in terms of taking care of the diseased members in the family. Unmarried members on the other hand, though relatively free, do not feel obligated to take an equivalent responsibility and consequently may have had a lower burden. The inability to effectively compartmentalize the “many” roles that married caregivers play coupled with lack of an adequate time to relax/unwind might have led to a higher burden.

A substantial proportion of patients were unemployed in our study. Odds of having burden in caregivers of unemployed care recipients were 6 times more likely than in caregivers whose patients were semi-professionals and professionals. Employment is a direct determinant of socio-economic status of a family. A patient who is employed is likely to meet many of his/her needs during sickness spells like better utilization of services, and is less likely to have financial burden. Unemployed patient is faced with a number of personal and social problems including sustaining his/her own life and maintaining his/her family. Therefore, unemployed status of patients may have had added to the burden of the caregiver. Other researchers have also reported similar findings.[29],[30],[31]

Odds of having burden in caregivers whose patients received treatment in day-care facility was 1.33 times more likely than caregivers whose patients received treatment as in-patient. Caregivers whose patients received treatment in both (in-patient and day-care) facilities were 2.3 times more likely to have burden than those whose patients received treatment in the in-patient facility. This might be because while caring for patients receiving both in-patient and day-care, caregivers may have had to spend a lot of time in accompanying patients to the hospital. This can be substantiated with the fact that 35% caregivers in our study had to visit the hospital daily for treatment of their patients. This may have led to a disruption in their daily routine. Some of the caregivers even had to miss work to accommodate time for their patients, which might have led to a disruption in their daily routine. A large number of hospital visits may also have entailed more financial burden in terms of transportation and meals besides direct treatment expenses. Similar findings have been reported in another study as well.[32] As an in-patient, he/she is taken care of by the formal caregivers like doctors, nurses and other paramedic staff, and family caregivers have comparatively lesser role to play. They may not even be required to be physically present with the patient at all times.


 » Conclusions and Recommendations Top


A modest level of burden was observed among family caregivers. Marital status and type of family of caregiver, occupation of patient and type of facility for treatment were found to be the main predictors of burden. With increasing life expectancy in India, likelihood of better health-care delivery, increasing incidence of cancer and rising cost of medical care, more and more patients are going to rely on family caregivers for their care and management in these countries. To sustain this ever growing pool of caregivers, we recommend that counseling centers be set up in all cancer hospitals and appropriate interventions and support groups be formed so as to help the caregivers cope and deal with the wretched multifaceted “burden.” Ironically, in the collectivist Indian society where family forms the backbone of support system, family caregivers have received little attention. This challenging issue, therefore, needs to be extensively addressed by clinicians and public-health physicians in a rather unique socio-cultural context of a country like India.

Limitations

Owing to the cross-sectional design the temporal relationship between burden on family caregivers and various factors cited as predictors, could not be delineated in the study. Moreover, since the catchment pool for the study was “hospital,” therefore, our sample may not be representative of the total population of caregivers of cancer patients. Due to unavailability of records of some of the patients, we were unable to elicit the clinical and pathological staging of all patients. Furthermore, different types of cancers lead to different levels of burden on caregivers (owing to different natural history of each one of them). However, due to a constrained sample size, we had to calculate the overall burden. The researcher intended to use Kuppuswamy scale to assess the socio-economic status of the study subjects in the two hospitals. However, only 15% of the study subjects revealed the details with respect to their monthly income. Therefore, we were unable to compare the SES of subjects admitted in the study hospitals.

 
 » References Top

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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4]



 

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