特发性肺纤维化患者主要照顾者的负担现状及影响因素分析*

Analysis of the current status and influencing factors of the care burden for the main caregivers of patients with idiopathic pulmonary fibrosis*

摘要:

目的 探讨特发性肺纤维化（IPF）患者主要照顾者的负担现状及影响因素。方法 选取2018年5月— 2019年5月在上海市同济大学附属肺科医院呼吸科就诊的IPF患者及其照顾者各80例为研究对象，收集照顾者的 一般资料。采用照顾者负担量表评价其照顾负担，IPF照顾者照顾知识需求问卷评估其专业知识水平，Pearson线 性相关分析照顾负担与照顾知识需求评分的相关性。根据照顾者负担量表评价结果，将照顾者分成轻度负担组、 负担加重组（中、重度负担者），并用多因素Logistic回归模型分析照顾负担加重的因素。结果 在80例主要照顾 者中，照顾负担总分（25.20±11.06）分，照顾知识需求总分（83.80±10.75）分。Pearson相关性分析显示，主要照顾者照 顾负担与照顾知识需求评分呈正相关（r =0.733，P <0.05）。经单因素分析显示，家庭月收入、照顾时间、患者自理能力 及病程与主要照顾者负担加重有关（P <0.05）。多因素Logistic回归模型分析结果提示，家庭月收入≤2 500元［O^ R= 4.031（95% CI：1.589，10.226）］、照顾时间≥17 h/d［O^ R=2.985（95% CI：1.316，6.771）］、患者完全无法自理［O^ R= 3.979（95% CI：1.682，9.413）］、患者病程>3年［O^ R=3.096（95% CI：1.496，6.407）］是主要照顾者负担加重的影响因 素（P <0.05）。结论 IPF患者主要照顾者均存在不同程度的照顾负担，且照顾负担与照顾知识需求密切相关，其照 顾负担加重主要与家庭月收入低、照顾时间长，以及患者自理能力差、病程长有关。

Abstract:

Objective To explore the current status and influencing factors of the care burden for the main caregivers of patients with idiopathic pulmonary fibrosis (IPF). Methods Eighty caregivers of IPF patients who were treated in the Department of Respiratory Medicine of our hospital from May 2018 to May 2019 were selected as the research subjects, and general data of caregivers were collected. The caregiver burden inventory was used to evaluate the care burden, and the level of needs for professional knowledge of the caregivers was evaluated by caregiving knowledge demand questionnaire. Pearson correlation analysis was used to assess the correlation between care burden and caregiving knowledge demand score. According to the care burden inventory, the caregivers were divided into light burden group and heavy burden group. The multivariate Logistic regression was applied to analyze the factors aggravating the care burden. Results Among the 80 main caregivers, the total score of care burden was (25.20 ± 11.06), and the total score of caregiving knowledge demand was (83.80 ± 10.75). Pearson correlation analysis showed that the care burden of the main caregivers was positively correlated with the caregiving knowledge demand score (r = 0.733, P < 0.05). A univariate analysis showed that the monthly family income, caregiving time, the patient's self-care ability, and the patient's course of disease were related to the increase in the burden of the main caregivers (P < 0.05). Multivariate Logistic regression analysis indicated that family monthly income ≤ 2 500 yuan [O^ R = 4.031 (95% CI: 1.589, 10.226)], caregiving time ≥17 h/d [O^ R = 2.985 (95% CI: 1.316, 6.771)], complete loss of self-care ability of patients [O^ R = 3.979 (95% CI: 1.682, 9.413)] and the patient's course of disease > 3 years [O^ R = 3.096 (95% CI: 1.496, 6.407)] were influencing factors for the increase in the burden of the main caregivers (P < 0.05). Conclusion The main caregivers of IPF patients all have different levels of care burden, and the care burden is closely related to the needs for caregiving knowledge. The increase in the care burden is mainly associated with the low monthly income of the family, the long time of caregiving, the poor self-care ability of the patient, and the long course of the patient's disease.