Burden, coping mechanisms, and quality of life among caregivers of hemodialysis and peritoneal dialysis undergoing and renal transplant patients.

CONTEXT: Investigations on burden, coping, and quality of life (QOL) in caregivers of hemodialysis (HD) and peritoneal dialysis (PD) undergoing and renal transplant (RT) patients may lead to the well-being of caregivers, and these studies are sparse and nil in Indian context. AIM: This study aims to comparatively evaluate the burden, coping mechanisms, and QOL among caregivers of HD and PD undergoing and RT patients. SETTING AND
DESIGN: Tertiary care hospital, cross-sectional and descriptive study. SUBJECTS AND METHODS: Burden, coping mechanisms, and QOL in caregivers of HD and PD undergoing and RT patients were investigated using Zarit burden interview, revised ways of coping and short-form 36 in 30 each caregivers of HD and PD undergoing and RT patients.
RESULTS: Moderate to severe burden, mild to moderate burden, and no burden were observed in the majority of caregivers of HD and PD undergoing and RT patients. Significantly higher mean burden score in caregivers of HD undergoing than RT patients (P < 0.01); accepting responsibility in caregivers of RT than PD undergoing patients; social functioning in caregivers of HD than PD undergoing patients; and general health in caregivers of RT than HD undergoing patients, was observed. Lower physical component was common in each group, whereas accepting responsibility in HD, self-controlling in PD, and age and escape avoidance in RT were found to be the specific predictors of the burden score.
CONCLUSIONS: Caregivers of HD and PD undergoing and RT patients have different levels of burden, use different mechanisms to cope, and showed different predictors of burden score.

INTRODUCTION

Chronic kidney disease (CKD) is characterized by age-related renal function decline and is associated with accelerated hypertension, diabetes, obesity, and primary renal disorders.[1] It has been estimated that 5%–10% world population is suffering from CKD.[2] Prevalence of CKD was found to be higher in Europe, USA, Canada, and Australia than sub-Saharan Africa and India. Gender wise, women than men were found to be affected more.[1] The rising prevalence of CKD was attributed to the aging of the population and increased prevalence of hypertension and diabetes mellitus.[3] The prevalence of stage 3 CKD ranged from 0.785% to 6% in Indian populations.[4] The fifth stage of CKD is known as end stage renal disease (ESRD). The patients with ESRD require to undergo dialysis or kidney transplant.[2] The incidence of new cases of ESRD in the last decade has remained stable at approximately at 110,000/year in USA.[5] In India, age-adjusted incidence of ESRD was 229 million.[6] In the majority of patients with ESRD, HD is the preferred modality of therapy followed by peritoneal dialysis (PD) (2%) and renal transplantation (5%).[789]

Physical and psychological challenges associated with dialysis procedure were shown to affect the patients as well as caregivers.[10] Caregivers are those who support and assist the patient to adapt and manage the life with disease condition.[11] Caregiving demands of the patients influence the physical, social, and emotional well-being of caregivers.[12] Increased demands of caregiving was shown to reduce the quality of life (QOL)[1314] in caregivers and prevent them coping with their caring roles.[1516] Assessment on the impact of HD, PD, and renal transplant (RT) therapies on the burden, coping mechanisms, and QOL among caregivers will suggest the measures for improving the efficiency of HD, PD, and RT modalities,[17] to develop interventions and to reduce the negative effects on caregivers' lives.[15]

Studies done in other populations on the impact of different modalities of renal replacement therapies (RRT) on the burden, coping mechanisms, and QOL showed higher burden score in caregivers of HD than PD and RT;[1819] using of escape avoidance, positive reappraisal, self-controlling, and planful problem-solving coping mechanisms in caregivers of HD[202122] and lower social functioning score (QOL) in caregivers of PD than HD patients.[13] It is not known whether the same aforementioned observations can be made in Indian populations which needs to be tested. It has been observed that burden score,[23] coping mechanisms,[24] and QOL[25] vary with culture. Therefore, there is a need to evaluate the burden, coping strategies, and QOL among caregivers of HD and PD undergoing and RT patients in culturally adapted instruments. It is hypothesized that due to the impact of different RRT modalities, there will be difference in the burden score, coping mechanisms, and QOL subscales in caregivers of patients receiving all the three RRT. In this study, an attempt was made comparatively to assess the caregiver burden, coping mechanisms, and QOL subscales among caregivers of HD and PD undergoing and RT patients and to investigate the predictors of burden score.

SUBJECTS AND METHODS

Ethical clearance was obtained from the institutional human ethics committee for the study (IEC No. 564). Consent of the individuals was obtained after explaining the aim and objectives of the study. In this prospective study, we have recruited caregivers of HD (n = 30) and PD (n = 30) undergoing and RT (n = 30) patients who fulfilled the inclusion criteria and sampled using purposive sampling technique. The inclusion criteria included caregivers should be of at least 18 years of age, has ability to understand Telugu language, has not undergone kidney replacement therapies, has no known psychological or neurological disorder, has no severe conflicts, not employed in healthcare organizations, and willing to participate. Caregivers with a history of divorce, financial crisis and death of first-degree family member and not willing to participate were excluded.

Data were collected using a questionnaire consisting of two sections. First section included details on age, gender, religion, marital status, education, occupation, and duration of care giving, relationship with the patient, history of chronic diseases, and the duration of undergoing treatment for chronic diseases. Details on the aforementioned variables were obtained by inquiring caregivers. Section 2 of questionnaire included Zarit burden interview (ZBI), ways of coping, and short form-36 (SF-36) scales. These scales were administered to the caregivers of HD and PD undergoing and RT patients. Assuming reliability of 0.7 as “acceptable” and the interobserver reliability to be 0.9, α = 0.05 and β = 0.2, the calculated sample size was 18 following Walter et al.[26] All the instruments used in the study were translated into the Telugu and backtranslated to English to check the consistency in the meaning of the items. Due to the availability of large number and repeated visit of caregivers of HD undergoing patients, the reliability (Cronbach's alpha) and test–retest reliability (intracorrelation coefficient [ICC]) measures of instruments were determined using the caregiver data of HD undergoing patients.

Caregiver burden, coping mechanisms, and QOL of caregivers of HD and PD undergoing and transplanted patients were evaluated using ZBI schedule, revised ways of coping (WCQ), and SF-36 instruments. Details of these instruments were described earlier.[272829] Cronbach's alpha and ICC of the Telugu translated version of ZBI were 0.906 and 0.928. For the Telugu translated version of WCQ, the obtained Cronbach's alpha and ICC were 0.994 and 0.762. Respective Cronbach's alpha for the 8 subscales of the WCQ were of the following: confrontive coping (0.316), distancing (0.933), self-controlling (0.975), seeking social support (0.993), accepting responsibility (0.993), escape avoidance (0.996), planful problem-solving (0.998), and positive reappraisal (0.998). In case of SF-36, the Cronbach's alpha and ICC were 0.885 and 0.949. The following Cronbach's alpha values were obtained for the 8 subscales such as physical functioning (0.904), role limitations due to physical health (0.679), role limitations due to emotional problems (0.470), energy/fatigue (0.753), emotional well-being (0.607), social functioning (0.048), pain (0.834), and general health (0.813). Physical component score was calculated by averaging items of physical function, role limitations due to physical health, pain, and general health. Averaging the items of social function, energy/fatigue, emotional well-being, and role limitation due to emotional problems, the mental component score was calculated.

Statistical analysis

Quantitative variables are expressed in mean and standard deviation while the categorical variables are represented as frequency and percent. Mann–Whitney U and Kruskal–wallis H-tests were employed to investigate the difference in median and mean of the groups. Categorical variables were compared using Chi-square test. Post hoc analysis was performed using “Tukey” test. Spearman rank correlation was performed to investigate the association of burden score with demographic, social, and clinical variables. Using demographic, social and clinical, coping, and QOL subscales as independent variables for the dependent variable, burden score was investigated employing stepwise regression method. All computations were performed using the IBM Statistical Package for the Social Sciences statistics for windows, version 20.0 (IBM Corp., Armonk, New York, USA).

RESULTS

Average age was not different between caregivers of HD and PD undergoing patients. Higher mean age was observed in caregivers of HD undergoing than RT patients (P < 0.05). The majority of caregivers in HD and PD undergoing and RT patients were males, the Hindus, married, unemployed, and spouse of the patients. With respect to education, the majority of caregivers of HD undergoing and RT patients had primary school education, whereas the higher proportion of caregivers of PD undergoing patients were graduates. Caregivers of HD undergoing patients were in care for longer duration (4.84 ± 2.99 years) than RT (2.89 ± 2.46 years) and PD undergoing patients (1.09 ± 0.82 years) (P < 0.01). Caregivers of HD undergoing patients though underwent higher mean duration of treatment for chronic diseases when compared to RT and PD undergoing patients, the difference between caregivers is not different significantly [Table 1].

Table 1

Characteristics of caregivers of hemodialysis and peritoneal undergoing and renal transplant patients

Variable	Caregivers of HD undergoing patients (n=30)	Caregivers of PD undergoing patients (n=30)	Caregiver of RT patients (n=30)
Age (years), mean±SD	46.55±13.96	43.30±16.36	35.90±11.12*
Gender
Male	20 (66.66)	18 (60)	21 (70)
Female	10 (33.33)	12 (40)	9 (30)
Religion
Hindu	27 (90)	28 (93.33)	29 (96.66)
Muslim	1 (3.33)	1 (3.33)	1 (3.33)
Christian	2 (6.66)	1 (3.33)	0 (0.00)
Marital status
Unmarried	5 (16.66)	6 (20)	4 (13.33)
Married	25 (83.33)	24 (80)	26 (86.66)
Education
Illiterate	2 (6.66)	5 (16.66)	5 (16.66)
Primary	10 (33.33)	2 (6.66)	7 (23.33)
Secondary	6 (20.00)	5 (16.66)	6 (20.00)
Intermediate	3 (10.00)	5 (16.66)	3 (10.00)
Graduate	5 (16.66)	8 (26.66)	5 (16.66)
Postgraduate	4 (13.33)	5 (16.66)	4 (13.33)
Occupation
Un-employee	19 (63.33)	20 (66.66)	19 (63.33)
Private employee	6 (20.00)	6 (20.00)	6 (20.00)
Government employee	2 (6.66)	2 (6.66)	3 (10.00)
Retired employee	2 (6.66)	2 (6.66)	0 (0.00)
Laborer	1 (3.33)	0 (0.00)	2 (6.66)
Relationship with patient
Husband/wife	20 (66.66)	17 (56.66)	15 (50.00)
Son/daughter	7 (23.33)	7 (23.33)	6 (20.00)
Mother/father	0 (0.00)	1 (3.33)	3 (10.00)
Other relative	3 (10.00)	5 (16.66)	6 (20.00)
Receiving treatment for chronic disease
No illness	20 (66.66)	26 (86.66)	24 (80.00)
One disease	9 (30.00)	3 (10.00)	6 (20.00)
Two or more diseases	1 (3.33)	1 (3.33)	0 (0.00)
Duration of care giving (years), mean±SD	4.84±2.99	1.09±0.82	2.89±2.46**
Duration under treatment for chronic disease (years), mean±SD	2.56±4.80	1.25±3.80	0.50±1.38

Age: *Significant difference between HD and RT at P<0.05, Duration of care giving: **Significant difference between caregivers of HD and PD undergoing and RT patients at P<0.01. SD – Standard deviation; HD – Hemodialysis; RT – Renal transplant; PD – Peritoneal dialysis

The mean burden score was higher among caregivers of HD undergoing (36.23 ± 18.61) than RT patients (24.20 ± 13.36) (P < 0.01). The majority of caregivers of HD undergoing patients had moderate to severe burden (40%); caregivers of PD undergoing patients (46.66%) had mild to moderate burden, but among caregivers of RT patients, higher proportion of them had no burden (56.66%). Statistically significant difference in the burden categories between caregivers of HD undergoing and RT patients was observed [Table 2]. Seeking social support was the dominant coping mechanism in caregivers of all three RRT receiving patients. Significant higher mean score was observed for accepting responsibility in caregivers of RT than PD undergoing patients (P < 0.01) [Table 3].

Table 2

Mean burden score and frequency distribution of burden severity in caregivers of hemodialysis and peritoneal dialysis undergoing and renal transplant patients

Variable	Caregivers of HD undergoing patients (n=30)	Caregivers of PD undergoing patients (n=30)	Caregivers of RT patients (n=30)
Burden score	36.23±18.61	36.30±16.64	24.20±13.36**
Severity of burden
Little to no burden	10 (33.33)	5 (16.66)	17 (56.66)**
Mild to moderate	5 (16.66)	14 (46.66)	8 (26.66)
Moderate to severe	12 (40.00)	7 (23.33)	5 (16.66)
Severe	3 (10.00)	4 (13.33)	0 (0.00)

Burden score: **Significant difference between caregivers of HD undergoing and RT patients at P<0.01. Severity of burden: **Significant difference in categories of severity of burden between caregivers of HD undergoing and RT patients at P<0.01. HD – Hemodialysis; RT – Renal transplant; PD – Peritoneal dialysis

Table 3

Descriptive statistics of subscales of ways of coping in caregivers of hemodialysis and peritoneal dialysis undergoing and renal transplant patients

Subscale	Caregivers of HD undergoing patients (n=30)	Caregivers of PD undergoing patients (n=30)	Caregivers of RT patients (n=30)
Confrontive coping	1.90±0.44	1.62±0.45	1.62±0.57
Distancing	2.16±0.53	1.85±0.48	1.85±0.69
Self-controlling	1.81±0.50	1.95±0.33	1.85±0.49
Seeking social support	2.45±0.62	2.68±0.26	2.62±0.47
Accepting responsibility	2.14±0.88	1.69±0.63	2.30±0.67*
Escape avoidance	1.08±0.65	1.02±0.78	0.68±0.61
Planful problem solving	2.40±0.52	2.37±0.37	2.23±0.77
Positive appraisal	2.31±0.75	2.26±0.59	2.20±0.72

*Significant difference between caregivers of PD undergoing and RT patients at P<0.05. HD – Hemodialysis; RT – Renal transplant; PD – Peritoneal dialysis

In SF-36 subscales, higher mean score was observed for physical functioning in all the three groups. Caregivers of HD undergoing patients showed least score in limitation due to physical health, whereas in caregivers of PD undergoing and RT patients, lower mean scores were observed in domains such as role limitation due to emotional problem and energy/fatigue, respectively. In caregivers of all the three RRT receiving groups, the mean scores of physical component were higher than mental component. Significant higher mean score of social functioning was observed among caregivers of HD than PD undergoing patients (P < 0.01). General health was significantly higher in caregivers of RT than HD (P < 0.01) undergoing patients [Table 4].

Table 4

Mean and standard deviation of subscales of short form-36 caregivers of hemodialysis and peritoneal dialysis undergoing and renal transplant patients

Subscale	Caregivers of HD undergoing patients (n=30)	Caregivers of PD undergoing patients (n=30)	Caregivers of RT patients (n=30)
Physical functioning	72.16±26.15	72.66±25.68	87.83±16.85**
Role limitation due to physical health	55.00±36.78	57.33±56.25	61.66±33.94
Role limitation due to emotional problem	56.66±39.29	44.44±37.48	59.99±36.51
Social functioning	67.50±15.25	54.58±16.24	62.08±18.41**
Energy/fatigue	51.33±15.47	49.33±11.12	55.33±14.73
Emotional well-being	58.66±12.96	54.13±9.61	58.13±12.93
Pain	63.91±25.76	55.91±20.44	59.83±27.58
General health	60.55±10.65	63.88±7.12	66.11±10.07**
Physical component	62.90±16.63	62.45±19.20	68.86±13.63
Mental component	58.54±15.82	50.62±14.87	58.88±14.04

Social functioning: **Significant difference between caregivers of HD undergoing and RT patients at P<0.01; General health: **Significant difference between caregivers of RT and HD undergoing patients at P<0.01. HD – Hemodialysis; RT – Renal transplant; PD – Peritoneal dialysis

Lower physical component summary score was found to be the common predictor for caregivers of patients receiving all three RRT accounting for 55.8%, 48.3%, and 43.3% variation in burden score. Lower accepting responsibility score (HD), self-controlling (PD), and age and escape avoidance (RT) were found to be the specific predictors [Table 5] for the burden score.

Table 5

Predictors of burden score among caregivers of hemodialysis and peritoneal dialysis undergoing and renal transplant patients analyzed by regression analysis

Variable	Standardized beta coefficient	Significance	Adjusted R2
HD
Physical component	−0.668	0.000	0.614
Accepting responsibility	−0.274	0.038
PD
Physical component	−0.517	0.000	0.695
Self-controlling	0.502	0.000
RT patients
Physical component	−0.710	0.000	0.629
Age	−0.353	0.008
Escape avoidance	0.293	0.023

HD – Hemodialysis; RT – Renal transplant; PD – Peritoneal dialysis

DISCUSSION

Average age of caregivers of PD was found to be lower than HD undergoing patients.[30] In our study, no difference in the average age of the caregivers of PD and HD undergoing patients was observed. However, caregivers of RT patients were found to be significantly younger than caregivers of HD undergoing patients (P < 0.01). Longer duration of care giving was observed among caregivers of HD than PD undergoing patients in an earlier studies.[133031] In our study also, we observed significantly higher duration of caregiving among caregivers of HD when compared to the caregivers RT and PD undergoing patients (P < 0.01). Majority of caregivers of HD and PD undergoing and RT patients of the present study were found to be males in contrast to the females reported earlier.[133031] It is not uncommon that male caregivers attending to the female patients. It is possible that some female patients may not have daughters or free or empathetic female to accompany her. It was observed that all the times, caregivers of the same gender were not found to accompany the patients as shown by the 10%–20% attendance of others than relatives. In an earlier study also, majority of the caregivers of HD undergoing patients were found to be the male caregivers,[21] and it was observed that male caregivers were useful in transportation, heavy lifting, and running errands.[21]

The majority of the caregivers of HD, PD undergoing, and RT patients in the present study were married, unemployed, and were spouses of the patients and in agreement with earlier studies.[13303132] With respect to education, the majority of caregivers of HD undergoing and RT patients were primary school educated whereas the majority of caregivers of PD undergoing patients were graduates. No consistent observation in educational status among caregivers of HD and PD undergoing patients was made in an earlier studies.[13213031] Similar proportion of age group, income, and educational levels was observed among caregivers of PD undergoing and RT patients.[19]

Higher caregiver burden score was observed in the caregivers of HD undergoing than RT patients in the present study as observed earlier.[1819] When analyzed for the level of burden among caregivers of patients receiving all three RRT in the present study, it was observed that majority of caregivers of HD and PD undergoing and RT patients had moderate to severe burden, mild to moderate, and no burden, respectively. Earlier studies showed moderate to severe burden in caregivers of both HD and PD undergoing patients.[193031] It is interesting to note that marked difference in the level of burden was observed among caregivers of patients receiving all three RRT in the present study, but the difference was significant only between caregivers of HD undergoing and RT patients (P < 0.01). A systematic review observed no difference in the burden between the caregivers of HD and PD undergoing patients.[33] Significantly higher burden score and severity of burden in caregivers of HD undergoing than RT patients may be due to the caring-associated tasks such as taking the patient to the dialysis center, providing restricted diet, attending the complications of dialysis procedure, limited social and recreational activities, and altered daily activities.[1834] In contrast, caregivers of RT patients who accompany the patients (during the follow-up and at the time of development of complications) to the care delivery centers and these activities are expected to be associated with lower caregiver burden. In the caregivers of HD undergoing patients, gender, religion, education, and occupation (P < 0.05), whereas education and relationship with patients, in the caregivers of PD undergoing patients, were found to be associated with burden score when analyzed by the Spearman rank correlation analyses. No association of burden score with demographic, social, and clinical variables was observed in caregivers of RT patients. In further analysis, comparison of median and means of the groups showed that lower than higher education levels showed higher burden score in caregivers of HD and PD undergoing patients only (P < 0.05).

Significantly higher mean accepting responsibility score among caregivers of RT than PD undergoing patients in the present study suggests that caregivers of the former group seem to accept responsibility greatly and attempt to solve problems when needed than the caregivers of the latter group.[35] If one accept responsibility, one may also know what to do about it which promotes to the problem-focused coping.[36] Lower use of accepting responsibility in caregivers of PD undergoing than RT patients may be a mechanism to lower the level of stress and frustration.[37] Accepting responsibility is problem-focusing coping strategy. Problem-focused coping strategies were found to be more useful in managing the stressful conditions.[37]

Energy/fatigue (vitality) domain in caregivers of HD undergoing and RT patients whereas role limitations due to emotional problem in caregivers of PD undergoing patients were most affected domains of QOL in the present study. Least score in energy/fatigue subscale in caregivers of HD than RT patients in the present study suggests experiencing of tiredness or worn out in caregivers of HD[38] undergoing patients as result of meeting medical, diet-related, and personal needs of the patients.[13] Lower score of role limitations due to emotional problems in caregivers of PD undergoing patients indicates experiencing of problems related to work and daily activities due to emotional ill health resulting from meeting the demands of repetitive daily exchanges and constant vigilance for home PD procedures.[1339] Earlier studies showed that most affected domains of QOL were energy/fatigue and emotional aspect subscales in caregivers of HD[1314] and emotional aspect subscale in caregivers of PD undergoing patients.[13] With respect to energy/fatigue (vitality domain) of the present study is in agreement with earlier study[14] and contrast with other study[13] may be due cultural, age group, and sample size differences.

In the present study, mental component score was lower than physical component score in caregivers of patients undergoing all three RRT modalities, but statistically significant difference was observed between two component scores in the caregivers of PD undergoing and RT patients (P = 0.00) only. In earlier studies also, lower mental component when compared to physical component score was observed in caregivers of patients receiving all three RRT modalities.[131440] In the present study, among the caregivers of HD (P = 0.001) and PD undergoing (P = 0.01) and RT patients (P = 0.01), the mental component score was found to decrease significantly with an increased level of burden. These observations suggest mental health was found to decrease due to the caregiver burden in caregiver of patients undergoing all three RRT.

Significantly higher social functioning score observed in caregivers of HD than PD undergoing patients suggests performing normal social activities by them unaffected by physical and mental health[39] greatly than caregivers of PD undergoing patients. On the other hand, significantly higher general health score in caregivers of RT than HD undergoing patients suggests perceiving of excellent health by the caregivers of former than latter group. Caregivers of RT accompany the patients for regular checkups and less involve physically in meeting the needs of the patients in contrast caregivers of HD undergoing patients not only involve in transportation of the patients for the dialysis at the centers but also involve physically depending on the functionality of the patients in meeting their needs. This may be the reason for perceiving of excellent health by the caregivers of RT than HD undergoing patients.

Earlier studies observed that mental health, vitality of the patient, type of relationship, pain[14] social aspect, pain, vitality, hours per week,[13] living with patient,[21] and mental and physical component[23] in caregivers of HD undergoing patients; mental component of caregiver and patients[13] in caregivers of PD undergoing patients; and male gender, marital status, low educational level, spouse or parent as caregivers and adverse effects on patient second transplant in caregivers of RT patients[32] were found to be the significant factors associated with caregiver burden.

Stepwise regression analysis was performed to find the predictors of burden score in the caregivers of patients undergoing all three RRT separately in the present study. Lower physical component summary score was the common predictor for burden score in caregivers of patients undergoing all three RRT, whereas along with lower physical component, lower accepting responsibility score in HD, self-controlling in PD, and age and escape avoidance in RT were found to be the specific predictors of the burden score in the present study. In an earlier study also, lower physical component score was found to be the predictor of burden score.[41] Caregivers with low QOL showed higher burden.[131435] Physical component summary score of QOL was found to be contributing 55.8%, 48.3%, and 43.3% for the burden score in caregivers of HD and PD undergoing and RT patients and indicated that it is a major component for causing burden among caregivers of patients undergoing all the three RRT. Earlier studies showed physical component in pooled dialysis caregivers;[19] mental component[14] or mixed physical and mental component in caregivers of HD; and mental component in caregivers of PD[1323] contribute largely to the burden score. It is interesting to note that coping mechanisms responsible for burden score were found to be different for caregivers of patients undergoing each modality of RRT (seeking social support and accepting responsibility in HD; self-controlling in PD; and escape avoidance in RT). Only in case of caregivers of RT patients, age was found to be influencing the burden score.

Low physical component score or impairment in physical health in caregivers of all the three RRT undergoing patients suggests experiencing of limitations by them in work and daily activities[38] due to their assistance in meeting the medical and personal needs of the patients, and the extent of impairment in physical health was found to be decreased from caregivers of HD and PD undergoing to RT patients. In caregivers of HD patients, physical component (physical health) was significantly lower in spouses (56.20 ± 14.52) when compared to children (72.32 ± 12.32) and other relatives (85.62 ± 4.40) (P = 0.002). The physical component score was found to decrease with increasing level of burden (P = 0.001). In the present study, the majority of the caregivers of HD undergoing patients were spouses of the patients. Spouses as caregivers and higher level of burden were responsible for lower physical health in caregivers of HD undergoing patients. Significantly lower physical component score was observed in males when compared to female (56.80 ± 17.47 vs. 70.92 ± 19.25) (P = 0.035) caregivers of PD undergoing patients. Physical component score was found to decrease with increasing educational level (P = 0.003) in caregivers of PD undergoing patients. Male gender and lower educational levels were responsible for lower physical health in caregivers of PD undergoing patients. Married when compared to unmarried (66.43 ± 12.86, P = 0.013) caregivers of RT patients showed significantly lower physical component score. Significantly decreased physical component with increasing level of burden in caregivers of RT patients (P = 0.040). These results suggest marital status and higher burden are responsible for decreased physical health in caregivers of RT patients. Decreased physical health with increasing burden was found to be common observation in caregivers of HD undergoing and RT patients, whereas spouses as caregivers in HD undergoing patients, male gender and lower educational level in caregivers of PD undergoing patients; and marital status in caregivers of RT patients were found to be specific factors responsible for lower physical health. In an earlier study also, caregiver burden was associated with marital status in caregivers of RT patients[32] and in agreement with the present study.

Accepting responsibility score was found to be significantly lower in unemployed when compared to other occupation groups (P = 0.043). Unemployed constitute 63% of the caregivers of HD undergoing patients and causing lower score in accepting responsibility. Lower use of accepting responsibility was observed to be a coping mechanism to reduce stress, and frustration[37] may be responsible for increasing burden score in this group of caregivers. Accepting responsibility is contributing 13.7% in burden score. Encouraging this group of caregivers to accept the responsibility may lead to problem-focused coping and reduce the burden among them.

Self-controlling coping mechanism was found to be significantly associated with burden score in caregivers of PD undergoing patients. Self-controlling was observed to be both problem- and emotion-focused coping mechanism to regulate persons' feeling and emotions to manage stressful situations. It was found to be effective coping mechanism in combination with adequate social support.[21] In the present study, self-controlling was found to increase with an increased level of burden (P = 0.01). In post hoc analysis, significant difference in self-controlling was observed between no burden when compared to moderate to severe (P = 0.021) and severe burden (P = 0.002). In correlation analysis, an inverse association between self-controlling and social functioning subscale of QOL (r = −0.428, P < 0.05).

Age and escape avoidance were significantly associated with burden in caregivers of RT patients. Younger when compared to older caregivers of RT patients (25.50 ± 14.58 vs. 20.62, P = 0.480) showed higher burden score, but the difference was not significant. In the present study, escape avoidance was not associated with demographic, social, and clinical variables. Escape avoidance is an emotion-focused coping strategy which involves the persons to disengage cognitively or behaviorally from stressful situations to manage their emotions and is associated negatively with psychological well-being.[42] This psychological maladaptation may lead to the increased burden in caregivers of RT patients. Although majority of the caregivers of RT patients had no burden (56%), 16% of them were found to have the severe burden. Caregivers who use escape avoidance strategy should be encouraged to participate in the caring of the patients by educating them on problems' managing and solving skills associated with illness to avoid distress.[37] This may lead to the decrease in burden of caregivers of RT patients.

In the present study, we have not screened the caregivers of patients undergoing all the three RRT for depression, anxiety, and addictions. We have included only those caregivers who were free from psychiatric or neurological disorders and had no history of conflicts, divorce, financial crisis, and death of first-degree family member as we believed that the aforementioned disorders and psychological states are associated with depression, anxiety, and addiction and act as confounding variables and fail to help in drawing clear evidence on burden, coping strategies, and QOL of the caregivers. The focus of our work was to study the characteristics of burden, coping strategies, and QOL of caregivers of patients undergoing RRT modalities in Indian context who are free from psychiatric disorders and maladaptive psychological states and to investigate the predictors of burden to form the frontline evidence on this aspect and pave the way for designing interventions to reduce the caregiver burden. We are exploring the role of psychiatric and mental health disorders in burden, coping strategies, and QOL in caregivers of patients undergoing RRT modalities in other studies. Items of all three instruments (burden, coping, and QOL) constituted 124 questions and consumed an hour to elicit answers from the caregivers. Addition of few more instruments for investigating some other aspects in a single study is not feasible and may contribute burden and leads to the noncooperation of the individuals. Hence, we have not studied the stressors of the caregivers of patients undergoing all RRT modalities in this study.

In the present study, we studied the mental health status of the caregivers of patients undergoing all the three RRT using SF-36 which showed impairment of mental health in all the three groups of caregivers. In addition to lower physical health, lower use of accepting responsibility in caregiver of HD undergoing patients, self-controlling in caregivers of PD undergoing patients and escape avoidance in caregivers of RT patients were identified coping strategies which contribute to the burden. Spouses as caregivers, low educational level, male gender, and marital status were found to be correlated with lower physical health, accepting responsibility, self-controlling, and escape avoidance coping strategies. Exploring the role of these factors in association with burden may lead to the designing of interventions to reduce burden for carers of patients undergoing RRT modalities in Indian context. Further, qualitative studies may bring into the light why different coping strategies used by the caregivers of patients undergoing different RRT modalities. Effect of educational programs and workshops to caregivers on caring of the patients and coping strategies in home settings needs to be tested in clinical trials in India context to confirm their efficacy.

Interventional studies showed that educating the caregivers improved their knowledge and reduced the burden, whereas application of continuous care model improved QOL and the use of supportive and behavioral therapy contributed to the psychological adjustment of the caregivers.[33] Four training sessions on problem-focused coping strategies reduced caregiver burden after 6 weeks in an interventional than control group.[43] Besides confirming the findings of the present study in studies involving larger population size, effect of interventional measures such as educating and training of the caregivers on problem-focused coping are need to be tested in caregivers of patients undergoing RRT modalities in Indian context. Our studies are in progress to recruit a large number of caregivers of patients undergoing each RRT modality and also to test the efficacy of educational and training sessions to bring down the burden in carers of patients undergoing all three RRT modalities. Comparison of populations for characteristics of burden, coping strategy, and QOL was found to be difficult due to the use of different instruments for measuring burden, coping mechanisms, and QOL. However, the comparison of the findings of the present study was made with only studies which used the same instruments. The results of our study showed that with respect to the comprised energy/fatigue (vitality), subscale of QOL in caregivers of HD undergoing patients is similar to the caregivers of Brazil[13] and lower physical health as a predictor of burden found in our study is in agreement with observation made in the caregivers of pooled dialysis patients of Spain.[41]

This is a first comparative and exploratory study on the burden, coping mechanisms, and QOL among caregivers of HD and PD undergoing and RT patients in the Indian context and attempts to generate hypothesis for further research.[44] The present study was carried out in a single dialysis center and results may not be applicable to all caregivers of HD and PD undergoing and RT patients attending dialysis/healthcare centers of different geographical locations and cultural backgrounds. The results of the study need to be replicated in larger sample size and longitudinal studies, different geographical regions, and cultural backgrounds. Causal inference may not be drawn from the study due to cross-sectional nature; on the other hand, community surveys are influenced by social trust and fluctuate over the time.[45]

CONCLUSIONS

The results of the present study demonstrate that caregivers of HD and PD undergoing and RT patients have different levels of burden, use different mechanisms to cope and have different affected domains of QOL and showed different predictors of the burden which needs to be taken into consideration while improving the support services and planning the interventions to reduce the burden, to encourage in adapting coping mechanisms, and to improve the QOL of caregivers of patients undergoing different RRT.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.