Liu Huayan, Song Qingqing, Zhu Lihui, Chen Dan, Xie Jianhui, Hu Shengnan, Zeng Shan, Tan Lingfang
J Neurosci Nurs. 2020 Apr;52(2):84-90. doi: 10.1097/JNN.0000000000000497.
Epilepsy is a common chronic disease with transient brain dysfunction and critically influences the quality of patients' family life. The aim of this study was to analyze the effectiveness of family management style on family quality of life in children.
We randomized 130 children to either the intervention group (n = 65) or the control group (n = 65). Family management style combined with routine care was applied in the intervention group within the first 24 hours after admission, whereas only routine care was applied in the control group. Family management style contains 3 steps: involve families into the intervention group and determine treatment plan, educate parents on how to manage their family, and monitor quality of home management. Scores on the Beach Center Family Quality of Life Scale (FQOL) of 2 groups were collected at 3 time points: within the first 24 hours after admission (T1), 6 months after discharge (T2), and 12 months after discharge (T3). Repeated-measures analysis of variance of FQOL scores was used to evaluate difference.
Full scores and each subscale's scores on FQOL in the control group and the intervention group at T1 had no statistical significance (P > .05). Scores on FQOL at T2 and T3 increased in the intervention group, but there was almost no change in the control group, with statistical significance between the intervention group and the control group (P < .05). Scores on FQOL at T1, T2, and T3 showed that score of subscale except parenting FQOL improved in the intervention group (P < .05), but no difference was shown in the control group (P > .05). There was no difference shown among the control group and the intervention group that interacted with time (P > .05).
The family management style can effectively improve the family quality of life in children with epilepsy, especially at the satisfaction level of family emotional well-being and disability-related support.
癫痫是一种常见的慢性疾病，伴有短暂性脑功能障碍，严重影响患者的家庭生活质量。本研究旨在分析家庭管理方式对儿童家庭生活质量的有效性。
我们将130名儿童随机分为干预组（n = 65）和对照组（n = 65）。干预组在入院后24小时内采用家庭管理方式结合常规护理，而对照组仅采用常规护理。家庭管理方式包括3个步骤：让家庭参与干预组并确定治疗计划，教育家长如何管理家庭，以及监测家庭管理质量。在3个时间点收集两组的海滩中心家庭生活质量量表（FQOL）得分：入院后24小时内（T1）、出院后6个月（T2）和出院后12个月（T3）。采用FQOL得分的重复测量方差分析来评估差异。
T1时对照组和干预组的FQOL总分及各子量表得分无统计学意义（P >.05）。干预组T2和T3时的FQOL得分升高，而对照组几乎没有变化，干预组与对照组之间有统计学意义（P <.05）。T1、T2和T3时的FQOL得分显示，干预组除育儿FQOL外的子量表得分有所改善（P <.05），而对照组无差异（P >.05）。对照组和干预组之间与时间的交互作用无差异（P >.05）。
家庭管理方式可有效提高癫痫患儿的家庭生活质量，尤其是在家庭情感幸福感和残疾相关支持的满意度方面。
