Abstract
BackgroundInformal 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.MethodsBetween 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.Results554 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).ConclusionsHealth policies should address both the direct medical burdens and the intangible psychological burdens of critical diseases.
Highlights
Informal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home
Univariate analysis Summary statistics illustrated that caregiver age, patient relationship, hours spent caregiving, family debt, total annual per capita income, OOP costs, and their patient’s self-rated health were all significantly associated with the Zarit Burden Interview (ZBI) score of family caregivers (Table1)
Our study focused on the informal caregivers of patients with critical illnesses and found that more than a quarter of family caregivers faced a moderate to severe burden with a ZBI greater than 40
Summary
Informal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home. The concern for informal caregivers is often overshadowed by critically ill patients. Caregivers are the main source of care for the critically ill, especially after discharge from a hospital or during terminal stages at home. Caregivers of critically ill patients shoulder multidimensional challenges, including monitoring diseases, providing emotional support, and sharing financial burdens [19]. Such prolonged challenges may result in depression, stress, diminished physical health, and even an increased risk of heart disease [20,21,22]. The caregiving capacity and efficiency of informal caregivers may be impaired, interfering with the recovery of critically ill patients and creating a vicious cycle
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