Introduction

Recently, many seriously ill children requiring medical equipment are being recommended to transition from hospital to home care in Japan. Since 2011, our recovery center has provided a support program for the transfer process from hospital to home for ill children and their families. The purpose of this study was to evaluate the factors related to high care burden after completing the discharge-support program.

Methods

A questionnaire-based cross-sectional study was conducted on all primary caregivers whose children received the program in our center and moved from hospital to home (30 children and 29 families) from May 2011 to May 2018. Fifteen children came from the neonatal intensive care unit. The questionnaire consisted of three parts: characteristics of children and families and life after the program; the Zarit Burden Interview (ZBI); and the Positive and Negative Affect Schedule (PANAS).

Results

Twenty-three primary caregivers responded (79% response rate). All children received tracheostomy and 71% received home mechanical ventilation. Primary caregivers were all mothers. High ZBI score was not related to the severity and type of medical equipment. There were relationships between high ZBI score and following factors: ‘unimproved relationship between patients and family members without primary caregivers’ and ‘additional medical equipment after discharge’. The result of PANAS showed that positive attitude was not different between those with high and low ZBI scores.

Conclusion

It is crucial to reach out to family members without a primary caregiver. Additional medical care/equipment after the program is related to the care burden of primary caregivers.

中文翻译：

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在康复中心完成出院支持计划后，与医疗复杂儿童的主要照顾者的高护理负担相关的因素

介绍

最近，在日本，许多需要医疗设备的重病儿童被建议从医院过渡到家庭护理。自 2011 年以来，我们的康复中心为患病儿童及其家人从医院到家的转移过程提供了支持计划。本研究的目的是评估完成出院支持计划后与高护理负担相关的因素。

方法

对 2011 年 5 月至 2018 年 5 月期间在我们中心接受该计划并从医院搬到家中的所有主要照顾者（30 名儿童和 29 个家庭）进行了一项基于问卷的横断面研究。15 名儿童来自新生儿重症监护室单元。问卷包括三个部分：孩子和家庭的特点和项目结束后的生活；扎里特负担访谈（ZBI）；以及正面和负面影响表 (PANAS)。

结果

23 名主要照顾者做出了回应（79% 的回应率）。所有儿童都接受了气管切开术，71% 的儿童接受了家庭机械通气。主要照顾者都是母亲。高 ZBI 评分与医疗设备的严重程度和类型无关。高 ZBI 评分与以下因素之间存在相关性：“没有主要照顾者的患者和家庭成员之间的关系未得到改善”和“出院后额外的医疗设备”。PANAS 的结果表明，ZBI 得分高和低的人的积极态度没有差异。

结论

在没有主要照顾者的情况下联系家庭成员至关重要。项目后额外的医疗护理/设备与主要护理人员的护理负担有关。