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生活质量可预测多发性硬化症患者及其照护者的社会支持。

The Quality of Life as a Predictor of Social Support for Multiple Sclerosis Patients and Caregivers.

出版信息

J Neurosci Nurs. 2020 Jun;52(3):106-111. doi: 10.1097/JNN.0000000000000503.

Abstract

BACKGROUND

Coping with a diagnosis of multiple sclerosis (MS) is challenging. MS is one of the most common causes of nontraumatic disability in young adults, and patients may need assistance with daily life activities. This article explores the relation between quality of life (QOL) and the perceived available social support among patients with MS and their families.

METHODS

The study included 120 subjects (60 patient-caregiver dyads). The average age of the patients was 53.95 ± 10.19 years, and for caregivers, it was 50.8 ± 13.3 years. The study used 2 subscales of the Berlin Social Support Scale (perceived availability of social support and need for social support) and the World Health Organization Quality of Life questionnaire for the assessment of QOL.

RESULTS

QOL in MS is lower compared with that of their caregivers in all dimensions except the social domain (P < .001, r = 0.54-0.64). A higher need for social support was experienced by caregivers. The need for support in this group is affected by 3 predictors: QOL in the environmental domain and in the physical domain as well as their subjective health. An improvement in QOL in all the domains is related to an increase of perceived available support, in both the group of patients and that of their caregivers (P < .05, ρ = 0.28-0.59).

CONCLUSIONS

Perceived available support is of great importance for both patients and their caregivers to enable them to function better in the physical, mental, social, and environmental domains of their QOL, where social relationships play a predictive role.

摘要

背景

应对多发性硬化症(MS)的诊断具有挑战性。MS 是导致年轻人非创伤性残疾的最常见原因之一,患者可能需要日常生活活动的帮助。本文探讨了 MS 患者及其家属的生活质量(QOL)与感知到的可用社会支持之间的关系。

方法

该研究纳入了 120 名受试者(60 对患者-照顾者对)。患者的平均年龄为 53.95±10.19 岁,照顾者的平均年龄为 50.8±13.3 岁。研究使用柏林社会支持量表的 2 个分量表(感知到的社会支持可用性和对社会支持的需求)以及世界卫生组织生活质量问卷评估 QOL。

结果

除社会领域外(P<.001,r=0.54-0.64),MS 患者的 QOL 在所有维度均低于其照顾者。照顾者对社会支持的需求更高。该组对支持的需求受到 3 个预测因素的影响:环境领域和身体领域的 QOL 以及他们的主观健康。所有领域的 QOL 改善都与感知到的可用支持增加有关,无论是患者组还是他们的照顾者组(P<.05,ρ=0.28-0.59)。

结论

对于患者及其照顾者来说,感知到的可用支持对于在 QOL 的身体、心理、社会和环境领域更好地发挥作用非常重要,其中社会关系具有预测作用。

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