帕金森病的照料负担和疾病认知。
The burden of care and the understanding of disease in Parkinson's disease.
机构信息
Department of Neurology, School of Medicine, Dong-A University, Busan, Korea.
Department of Nursing, Dongju College, Busan, Korea.
出版信息
PLoS One. 2019 May 31;14(5):e0217581. doi: 10.1371/journal.pone.0217581. eCollection 2019.
BACKGROUND AND OBJECTIVE
Education of disease plays an important role in management of Parkinson's disease (PD). However, little is known about the link between the understanding of disease and the burden of care. This study was carried out to find the correlation between the burden of care and the understanding of disease in caregivers for PD patients.
METHODS
Non-demented patients with PD and their caregivers participated in structured interviews. Understanding of patients and caregivers was evaluated through newly-devised questions. The caregiver burden inventory was used to assess the burden of care.
RESULTS
A total of 142 pairs of patients and their caregivers were recruited. A correlation analysis showed that the burden of care was positively associated with low understanding of the disease by the caregiver. Daily care time and female patients were revealed to be independently associated with the burden of care through a multivariate analysis. Further analyses were performed in the caregiver group according to relationship with patients. The spouse group showed an increased burden of care and poor understanding compared to the offspring group. A multivariate analysis revealed that daily care time and understanding were independent predictors for the burden of care in the spouse group. There was no significant association in the offspring group.
CONCLUSION
The burden of care was associated with higher daily caregiving time and female gender of the patient, and was significantly increased in the spouse of the patient. In the spouse group, better understanding of the caregiver correlated with less burden of care.
背景与目的
疾病教育在帕金森病（PD）的管理中起着重要作用。然而，对于疾病理解与护理负担之间的联系，我们知之甚少。本研究旨在探讨 PD 患者照料者的疾病理解与护理负担之间的相关性。
方法
本研究纳入了非痴呆的 PD 患者及其照料者，并进行了结构化访谈。通过新设计的问题评估患者和照料者对疾病的理解。使用 caregiver 负担量表来评估护理负担。
结果
共纳入了 142 对患者及其照料者。相关性分析显示，照料者对疾病的理解程度越低，其护理负担就越大。多变量分析显示，日常护理时间和患者为女性与护理负担独立相关。进一步在照料者组中根据与患者的关系进行分析。与子女组相比，配偶组的护理负担更大，对疾病的理解更差。多变量分析显示，日常护理时间和理解是配偶组护理负担的独立预测因素。在子女组中则没有显著关联。
结论
护理负担与更高的日常护理时间和患者的女性性别有关，且在患者的配偶中显著增加。在配偶组中，照料者更好地理解疾病与护理负担减轻相关。
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