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家庭管理方式对复杂先天性心脏病患儿姑息性手术后结局的影响。

Effect of family management styles on the outcomes of children with complex congenital heart disease after palliative surgery.

作者信息

Xia Yuxian, Yang Rui, Zhang Yuemeng, Yin Di, Zhang Wen, Jiang Qi, Zhu Yifan, Zhang Haibo, Hu Renjie, Dong Wei

机构信息

Department of Cardiothoracic Surgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.

Shanghai Jiaotong University School of Medicine, Shanghai, China.

出版信息

Front Pediatr. 2025 Mar 27;13:1555982. doi: 10.3389/fped.2025.1555982. eCollection 2025.

Abstract

BACKGROUND

This study aimed to explore family management style (FMS) after palliative surgery in children with complex congenital heart disease (CCHD) and evaluate its influence on their outcomes.

METHODS

A cross-sectional survey was conducted among 252 families of children with CCHD who underwent palliative surgery at our center. The Family Management Measure was used to investigate their FMS, and the outcomes with different FMSs were analyzed. Cluster analysis was employed to classify the FMSs into distinct groups.

RESULTS

The cluster analysis identified four FMSs, namely, the Active and Collaborative (Cluster 1, 29.37%), the Chaotic and Nervous (Cluster 2, 10.71%), the Confident and Caring (Cluster 3, 22.22%), and the style (Cluster 4, 37.70%). Children in Cluster 1 demonstrated the highest quality of life, while those in Cluster 2 had the lowest (73.93 ± 12.71 and 59.03 ± 18.70,  < 0.01). The unplanned readmission rates were significantly higher in Clusters 2 and 4 (18.52% and 22.11%) compared to Clusters 1 and 3 (4.05% and 3.57%,  < 0.01).

CONCLUSION

The findings highlight the significant influence of FMS on the outcomes of children with CCHD following palliative surgery. The children in Cluster 1 exhibited the most favorable quality of life, whereas those in Cluster 2 had the worst. Health professionals should implement interventions to optimize FMS.

摘要

背景

本研究旨在探讨复杂先天性心脏病(CCHD)患儿姑息性手术后的家庭管理方式(FMS),并评估其对患儿预后的影响。

方法

对在本中心接受姑息性手术的252例CCHD患儿家庭进行横断面调查。采用家庭管理量表调查其FMS,并分析不同FMS的预后情况。采用聚类分析将FMS分为不同类别。

结果

聚类分析确定了四种FMS,即积极协作型(第1组,29.37%)、混乱紧张型(第2组,10.71%)、自信关怀型(第3组,22.22%)和[此处原文缺失具体类型]型(第4组,37.70%)。第1组患儿的生活质量最高,而第2组患儿的生活质量最低(分别为73.93±12.71和59.03±18.70,P<0.01)。第2组和第4组的计划外再入院率(分别为18.52%和22.11%)显著高于第1组和第3组(分别为4.05%和3.57%,P<0.01)。

结论

研究结果突出了FMS对CCHD患儿姑息性手术后预后的显著影响。第1组患儿的生活质量最有利,而第2组患儿的生活质量最差。卫生专业人员应实施干预措施以优化FMS。

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Adapting the Family Management Styles Framework to Include Children.将家庭管理风格框架改编为包含儿童的内容。
J Pediatr Nurs. 2019 Mar-Apr;45:26-36. doi: 10.1016/j.pedn.2018.12.006. Epub 2018 Dec 28.
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The role of palliative care in critical congenital heart disease.姑息治疗在重症先天性心脏病中的作用。
Semin Perinatol. 2017 Mar;41(2):128-132. doi: 10.1053/j.semperi.2016.11.006. Epub 2017 Feb 8.

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