Burden in primary family caregivers caring for uremic patients on maintenance peritoneal dialysis

Abstract

Background: Managing the burden of care for patients with chronic debilitating diseases is an important issue. Herein, we assessed the burden in primary family members caring for uremic patients on maintenance peritoneal dialysis. Methods: One hundred seventy caregivers and 170 patients were recruited. Self-perceived scoring along the Zarit Caregiver Burden Scale (ZCBS), World Health Organization Five-item Well-Being Index (WHO-5), and Warwick–Edinburgh Mental Well-being Scale (WEMWBS) were determined for caregivers. Results: There was an inverse relationship between ZCBS and WHO-5 or WEMWBS scores in caregivers, suggesting that the higher the burden, the lesser the self-perceived well-being. One hundred two of 170 caregivers (60%) reported mild to moderate burden, indicating a common presence of mild to moderate caring-related mental and physical stress. Moreover, 31 caregivers (18.2%) reported moderate to severe burden. Several patient disease factors, including diabetes and frailty, increased caregiver burden, while insurance coverage and out-of-pocket medical costs were also positively correlated. Caregivers who lived with patients and spent longer hours in caring-related activities had higher burden scores, while regular exercise seemed to partially alleviate the burden. Conclusion: Our study clearly showed that caring for patients with maintenance peritoneal dialysis caused physical, mental, and social burden in family caregivers, with the extent of the stress being influenced by patients’ disease severity and other demographic factors in both patients and caregivers.

Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review)

“…Of the included studies, 35 used a cross sectional design [5,[9][10][11][12] and three provided cross sectional data within other designs; one used a quasi-experimental design [46], one used a longitudinal design [47], and one a mixed method design [6]. Studies included in the review were completed in a variety of countries, including: seven in Turkey [11,[22][23][24]27,33,46], four in the USA [5,18,29,44], four in Iran [31,34,37,39], two in Brazil [25,26], two in Japan [34,41,43], two in Saudi Arabia [9,21], three in China [12,42,45], two in Nigeria [6,17], two in Jordan [16,19], two in India [32,35]; and a single study in Nepal [10], Canada [38], Pakistan [40], Greece [36], Spain [20], Singapore [47], Vietnam [30], and Indonesia…”

“…Three studies reported moderate CB in the caregiver dialysis group and low CB in caregivers of RT patients [22,23,35]. Mild to moderate burden was reported in caregivers of patients receiving HD [12,17,33,40,42,43,45,47] and patients receiving PD [27]. One study reported mild to moderate CB in caregivers of patients receiving PD, HD, and RT [24].…”

“…Twenty-seven studies of the thirty-eight studies reviewed explored the age of caregivers [5,[9][10][11][12]16,19,21,22,24,[26][27][28][29][30][31][32][33][34]36,37,39,45,46] and patients as a predictor of CB [9,16,19,20,24,25,31,34,37,39,41,45]. Four studies highlighted a negative correlation between CB and caregiver age [9,21,25,46].…”

“…Caregivers of older care recipients had a significantly higher level of CB than those who provide care to younger care recipients [9,20,39,41], while a single study reported high scores in one of the CB components (environmental component) in caregivers of younger patients [25]. The remaining studies reported that caregiver age did not influence feelings of burden in caregivers [11,19,24,26,27,29,32,34,45] or patient age [16,19,24,26,31,34,37,45].…”

“…Twenty-three studies explored the gender of caregivers [5,6,11,16,17,19,22,[24][25][26][27][28][31][32][33][34]36,39,42,[44][45][46] and patients [16,19,[24][25][26]31,34,37,39,42,44,45] as a contribution to CB. Many studies reported that female caregivers experienced greater feelings of burden than male caregivers [5,6,11,17,26,32,42,45,46]. However, two studies reported that this association did not reach a statistically significant level [5,6].…”