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患者家属的特征和负担:多发性硬化症的护理经验。一项观察性研究。

Profile and burden of the family caregiver: the caring experience in multiple sclerosis. An observational study.

机构信息

Scientific Research Area, Italian Multiple Sclerosis Foundation, Via Operai 40, 16149, Genoa, Italy.

Department of Physiopathology, Experimental Medicine and Public Health, University of Siena, Siena, Italy.

出版信息

BMC Psychol. 2024 Mar 26;12(1):173. doi: 10.1186/s40359-024-01678-w.

Abstract

BACKGROUND

The broad implications of caring for a family member with a chronic medical condition, such as MS, can lead caregivers to experience a high burden of care. The aim of the study was to describe profile of MS caregivers and their burden and to explore potential factors influencing this burden.

METHODS

200 family caregivers of a person with MS completed survey questionnaires across a cross-sectional study. Many information were collected: caregiver socio-demographic and health-related data, caregiving activities, knowledge of MS, coping strategies, mood, social support received and care recipient information. Caregiving burden was measured by the ZBI (Zarit Burden Interview). The extent to which the variables explained caregiver burden was analyzed using a hierarchical approach.

RESULTS

68% of the caregivers reported a perceived burden of care (ZBI score > 20). Our results show that physical and mental related-health variables are important predictive factors of the care burden, explaining much of the observed variance (40.9%).

CONCLUSION

Family caregivers in MS continue to make up the shortfall produce by national health and welfare systems. We highlighted the importance of good physical and mental health in decreasing perceived burden. Working to alleviate psychological distress through mechanisms focus on reducing worries and perceived burden may be a valid approach.

摘要

背景

照顾患有慢性疾病(如多发性硬化症)的家庭成员会带来广泛的影响,这可能导致照顾者承受沉重的负担。本研究旨在描述多发性硬化症照顾者的特征及其负担,并探讨影响这种负担的潜在因素。

方法

在一项横断面研究中,200 名多发性硬化症患者的家庭照顾者完成了问卷调查。收集了许多信息:照顾者的社会人口统计学和与健康相关的数据、照顾活动、多发性硬化症知识、应对策略、情绪、获得的社会支持以及照顾对象的信息。照顾负担通过 ZBI(Zarit 负担访谈)进行衡量。使用分层方法分析了变量解释照顾者负担的程度。

结果

68%的照顾者报告存在照顾负担(ZBI 评分>20)。我们的结果表明,身体和心理健康相关变量是照顾负担的重要预测因素,解释了大部分观察到的差异(40.9%)。

结论

多发性硬化症家庭照顾者仍然弥补了国家卫生和福利系统的不足。我们强调了保持良好身心健康对于减轻感知负担的重要性。通过关注减轻担忧和感知负担的机制来减轻心理困扰可能是一种有效的方法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fa00/10964650/42f8a96c860c/40359_2024_1678_Figa_HTML.jpg

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