BURDEN AMONG CAREGIVERS OF PATIENTS ON HEMODIALYSIS IN DIALYSIS CENTRES WORKING UNDER HUB AND SPOKE MODEL

Chronic kidney disease (CKD) imposes a substantial burden on both patients and their caregivers. Hemodialysis remains the most commonly used renal replacement therapy, improving patient survival but adding significant psychosocial and economic strain. Caring for an individual on maintenance hemodialysis can lead to physical, emotional, and financial stress, thereby influencing the overall well-being of caregivers.

A cross-sectional observational study was conducted among caregivers of patients undergoing maintenance hemodialysis at centres functioning under the hub-and-spoke model. Caregiver burden was evaluated using the Zarit Burden Interview (ZBI). Socio-demographic parameters such as age, gender, relationship to the patient, income, and duration of caregiving were recorded. Data were analyzed to assess associations between these variables and the level of caregiver burden.

Results

1.      Patient characteristics

2.      Caregiver characteristics

3.      Comparison of variables with Burden score

Among 698 caregivers studied, 53.3% were male and 46.7% were female. The majority of caregivers were in the 40–59 year age group (51.9%). The mean duration of caregiving was 2.5 years, with a range from 3 months to 6 years.

A statistically significant association was observed between dialysis vintage (P < 0.001) and gender of caregiver (P = 0.016) with caregiver burden. Other sociodemographic factors, including age, relationship to the patient, and income, did not show significant associations.

This study evaluated caregiver burden among attendants of maintenance hemodialysis patients in government-run dialysis centres. While much of the research has focused on patients themselves, caregivers play a critical role in treatment adherence and emotional support. The level of burden experienced by caregivers can be influenced by many factors. Majority of caregivers belong to the age group 40-59 yrs (51.9%). Mean duration of delivery of care was 2.5 years, maximum being 6 years and minimum being 3 months. 60.7 % of the caregivers in our study were spouse in the relationship to the patient which is similar to a study done by chhetri SK et al in which 56.09% of the caregivers were spouses.  Maximum 47.7% of the caregivers belong to 1- 3 years of caregiving duration and 36% of caregivers were in >3 years group. It can be attributed as, the longer the caregivers took care of their patients, the greater burden they endured as it was observed by severe burden in those with long vintage of dialysis. In a study done by Habibzadeh H et al, 52% of the care givers of hemodialysis patients had moderate and low levels of quality of life. Abbasi et al reviewed the caregiver stress and its related factors in caregivers of hemodialysis patients and reported that 74.2% of caregivers suffered from extreme caregiver burden. Results of this study showed that moderate to severe burden was observed in 54 % of the caregivers. Statistical analysis results indicate that prolonged duration of dialysis is strongly associated with higher caregiver burden. Female caregivers reported greater levels of burden compared to males. These results are consistent with previous studies by Chhetri et al. and Abbasi et al., which highlighted increased stress among female caregivers and those involved in long-term care.

The moderate-to-severe burden observed in nearly half of caregivers emphasizes the need for interventions such as counseling, peer support groups, and institutional assistance to mitigate caregiver stress.

CONCLUSION

In this study, 54% of caregivers experienced moderate to severe burden. Longer duration of dialysis was directly associated with increased caregiver strain. Targeted psychosocial and financial support strategies should be incorporated into chronic kidney disease programs to enhance caregiver well-being.