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母亲作为脑瘫患儿照顾者的社会支持对其的影响。

Impact of social support for mothers as caregivers of cerebral palsy children in Japan.

机构信息

Quality Management Center, Tokyo Medical and Dental University Hospital, 1-5-45 Yushima, Bunkyo-ku, Tokyo 113-8510, Japan.

Japan Council for Quality Health Care, 1-4-17, Toyo Bldg., Kandamisaki-cho, Chiyoda-ku, Tokyo 101-0061, Japan.

出版信息

J Pediatr Nurs. 2022 Mar-Apr;63:e64-e71. doi: 10.1016/j.pedn.2021.10.010. Epub 2021 Nov 1.

Abstract

PURPOSE

Social supports are critical to alleviate the psychological and physical burden of primary caregivers of children with disabilities. This study aims to (1) clarify how cerebral palsy in children affects caregiving burden of the mother, and (2) identify the social supports that can effectively reduce that burden.

DESIGN AND METHODS

This is a cross-sectional study in which mothers of children with cerebral palsy completed questionnaires and provided data regarding their child's condition, family support, social support usage, degree of satisfaction with supports, and caregiving burden.

RESULTS

We analyzed responses from 1190 mothers. Support usage, particularly of home-visit nursing, home care, home-visit rehabilitation, and mobility support, was higher in severely burdened groups. However, the proportion of satisfaction with social support in groups with light or no burden were higher, particularly in home care, home-visit rehabilitation, training/treatment, and short stays. Mothers whose children have an intellectual disability and gross exercise ≥1 in addition to tube feeding or intravenous nutrition especially felt a strong sense of burden. The most effective measure in reducing mother's sense of burden was short stays.

CONCLUSIONS

Mothers with children who can move and have an intellectual disability felt more burden compared with mothers of bedridden children. The findings clarify that supports, such as home care and short stays, have a significant impact on reducing the mother's sense of burden.

PRACTICE IMPLICATIONS

Due to the large sample size, we believe that the results can inform efforts to increase social support for caregivers.

摘要

目的

社会支持对于减轻残疾儿童主要照顾者的心理和生理负担至关重要。本研究旨在:(1)阐明儿童脑瘫如何影响母亲的照顾负担;(2)确定能有效减轻这种负担的社会支持。

设计与方法

这是一项横断面研究,脑瘫儿童的母亲完成了问卷调查,并提供了有关其子女状况、家庭支持、社会支持使用、对支持的满意度以及照顾负担的数据。

结果

我们分析了 1190 位母亲的回答。在负担较重的组中,支持的使用,特别是家庭访问护理、家庭护理、家庭访问康复和行动支持的使用更高。然而,在负担较轻或无负担的组中,对社会支持的满意度比例更高,特别是在家庭护理、家庭访问康复、培训/治疗和短期住宿方面。除了管饲或静脉营养外,其子女还有智力残疾和粗大运动≥1 的母亲特别感到负担沉重。减轻母亲负担感最有效的措施是短期住宿。

结论

与卧床不起的孩子的母亲相比,能活动且有智力残疾的孩子的母亲感到负担更重。这些发现阐明了家庭护理和短期住宿等支持措施对减轻母亲负担感有重大影响。

实践意义

由于样本量大,我们相信这些结果可以为增加照顾者的社会支持提供参考。

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