Abstract / Summary
Background: Maintenance hemodialysis (MHD) imposes a considerable psychosocial and economic burden not only on patients but also on the family members who care for them. Government-supported dialysis programmes delivered through a hub-and-spoke public–private partnership model have expanded access to dialysis close to patients' homes, but the burden experienced by caregivers within this delivery model has not been well characterised. Objective: To assess the level of burden among caregivers of patients undergoing MHD at government-supported centres functioning under a hub-and-spoke model, and to identify sociodemographic and clinical factors associated with caregiver burden. Methods: In this cross-sectional observational study, 698 caregivers attending peripheral dialysis centres linked to a hub hospital were enrolled. Caregiver burden was assessed using the 22-item Zarit Burden Interview (ZBI), categorised as little-or-no (0–22), mild-to-moderate (23–44), moderate-to-severe (45–66), and severe (67–88) burden. Sociodemographic and clinical variables of both patients and caregivers were recorded and tested for association with burden category using the chi-square test, with p<0.05 considered significant. Results: Of 698 caregivers, 419 (60.0%) were male and 279 (40.0%) female; 61.2% were spouses of the patient. Moderate-to-severe or severe burden was present in 377 caregivers (54.0%). Caregiver burden showed a statistically significant association with dialysis vintage (p<0.001), with the proportion of moderate-to-severe/severe burden rising from 26.2% in caregivers of patients on dialysis for under 1 year to 80.4% in those on dialysis for more than 3 years. A significant association was also observed with caregiver gender (p=0.016), female caregivers reporting greater burden than male caregivers. No significant association was found with caregiver age, relationship to the patient, or household income (p>0.05). Conclusion: Roughly one in two caregivers of patients on MHD at hub-and-spoke dialysis centres experienced moderate-to-severe burden, closely tracking dialysis vintage and caregiver sex. These observations suggest that caregiver-directed psychosocial and financial support should be considered an integral, longitudinally-scaled component of chronic dialysis care programmes.