Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China

• Published in: BMC palliative care Vol. 20; no. 1; p. 167
• Main Authors: Fu, Wenhao, Li, Jiajia, Fang, Feng, Zhao, Dan, Hao, Wenting, Li, Shixue
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 22-10-2021; BioMed Central; BMC
• Subjects: Caregivers; China; Cost of Illness; Critical Illness; Cross-Sectional Studies; Demographic aspects; Educational attainment; Families & family life; Family income; Gender; Health aspects; Health education; Humans; Illnesses; Informal caregiver; Job stress; Mental health; Palliative care; Patients; Patients with critical illness; Psychological aspects; Quality of life; Questionnaires; Rural areas; Social aspects; Social networks; Subjective burden; Terminal care; China; Informal caregiver; Patients with critical illness; Subjective burden; China
• ISSN: 1472-684X; 1472-684X
• DOI: 10.1186/s12904-021-00858-4

Informal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home. However, the concern for informal caregivers is often overshadowed by critically ill patients. The purpose of this study is to determine the influencing factors of the subjective burden of informal caregivers and to seek solutions accordingly.
Between July and August 2019, a cross-sectional study was conducted in Shandong, China, focusing on family caregivers and critically ill patients. Subjective caregiver burden was measured by the Chinese version of Zarit Burden Interview (ZBI). The stress process model was used to identify conditions relevant to the caregiving burden and to assess their impact on family caregivers.
554 samples were selected for analysis. The average scores of Zarit Caregiver Burden Interview (ZBI) scores in this study was 30.37±19.04 (n=554). ZBI scores of older, less educated, and spouse caregivers were significantly lower (4.12; 95%CI, 0.42 to 7.81; P =0.029). Objective and subjective burdens increased proportionally. Secondary role stress factors included the higher out-of-pocket (OOP) costs of critical diseases and lower household income, both of which increased caregivers' subjective burdens (1.28; 95%CI, -0.06 to 2.63; p=0.062). Formal medical aid systems played a positive role in reducing subjective caregiving burdens (-7.31; 95%CI, -13.23 to -1.40; p=0.016).
Health policies should address both the direct medical burdens and the intangible psychological burdens of critical diseases.