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残疾儿童母亲的照顾负担:家庭生活质量与疲劳的关系。

The care burden of mothers of children with disability: Association between family quality of life and fatigue.

机构信息

Ordu University Training And Research Hospital, Department of Palliative Care, Ordu, Turkey.

Ordu University Faculty of Health Sciences, Department of Pediatric Nursing, Ordu, Turkey.

出版信息

J Pediatr Nurs. 2023 Nov-Dec;73:e418-e425. doi: 10.1016/j.pedn.2023.10.010. Epub 2023 Oct 21.

Abstract

AIM

This study was performed with the aim of investigating the correlation between care burden, family quality of life and fatigue of mothers of children with disability.

MATERIAL AND METHOD

The sample for this descriptive study comprised the mothers of 280 children with disabilities accepting participation in the study, meeting the inclusion criteria, and registered in special education and rehabilitation centers in Turkey. Data were collected with the Mother-Child Descriptive Information Form, Bakas Caregiving Outcomes Scale (BCOS), Beach Center Family Quality of Life Scale (BCFQOLS) and Fatigue Severity Scale (FSS).

RESULTS

Mothers, mean BCOS scores were 63.29 ± 17.47, mean BCFQOLS scores were 93.74 ± 14.63, and mean FSS scores were 3.84 ± 1.43. There was a statistically significant positive, moderate intensity correlation between the BCOS scores and BCFQOLS scores of mothers (r = 0.404, p < 0.001); a statistically significant negative weak correlation between BCOS scores and FSS scores (r = -0.346,p < 0.001); and a statistically significant negative weak correlation between BCFQOLS scores with FSS scores (r = -0.22,p < 0.001). According to regression analysis, the care burden of mothers was identified to be a significant determinant of family quality of life and fatigue severity (p < 0.05).

CONCLUSION

The results of the study showed that as the care burden of mothers of children with disability increases, family quality of life reduces and fatigue levels increase.

PRACTICE IMPLICATIONS

It is recommended to support the mother in the care process, to plan activities and trainings to reduce the burden and fatigue of care, to increase the quality of family life, and to provide psychological support.

摘要

目的

本研究旨在探讨残疾儿童母亲的照护负担、家庭生活质量与疲劳感三者之间的相关性。

材料与方法

本描述性研究的样本包括土耳其特殊教育和康复中心登记在册的 280 名残疾儿童的母亲,这些母亲符合纳入标准并参与了研究。研究数据通过使用母子基本信息表、Bakas 照护结果量表(BCOS)、Beach 中心家庭生活质量量表(BCFQOLS)和疲劳严重程度量表(FSS)收集。

结果

母亲的 BCOS 评分均值为 63.29 ± 17.47,BCFQOLS 评分均值为 93.74 ± 14.63,FSS 评分均值为 3.84 ± 1.43。母亲的 BCOS 评分与 BCFQOLS 评分之间存在统计学上显著的正相关(中度强度,r = 0.404,p < 0.001);BCOS 评分与 FSS 评分之间存在统计学上显著的负弱相关(r = -0.346,p < 0.001);BCFQOLS 评分与 FSS 评分之间也存在统计学上显著的负弱相关(r = -0.22,p < 0.001)。回归分析显示,母亲的照护负担是影响家庭生活质量和疲劳严重程度的显著决定因素(p < 0.05)。

结论

研究结果表明,随着残疾儿童母亲的照护负担增加,家庭生活质量降低,疲劳感加重。

实践意义

建议为照护过程中的母亲提供支持,计划活动和培训以减轻照护负担和疲劳感,提高家庭生活质量,并提供心理支持。

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