Fuyuki Makiko, Yotani Nobuyuki, Kondo Masako, Iijima Yoshitaka, Wada Hiroshi, Takemoto Kiyoshi, Funato Masahisa, Ito Kazuya, Shintaku Haruo, Hamazaki Takashi
Department of Pediatrics, Osaka City University Graduate School of Medicine; Department of Palliative Medicine, National Center for Child Health and Development; Department of Pediatrics, Osaka Developmental Rehabilitation Center.
Department of Palliative Medicine, National Center for Child Health and Development.
Brain Dev. 2021 Nov;43(10):988-996. doi: 10.1016/j.braindev.2021.06.003. Epub 2021 Jul 2.
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.
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).
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.
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.
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庭提供了从医院到家庭的转移过程支持计划。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。
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转到家中的所有儿童的主要照顾者（30名儿童和29个家庭）进行了基于问卷的横断面研究。15名儿童来自新生儿重症监护病房。问卷由三部分组成：儿童和家庭的特征以及计划后的生活；扎里特负担访谈（ZBI）；以及正负情感量表（PANAS）。
23名主要照顾者做出了回应（回应率为79%）。所有儿童均接受了气管造口术，71%接受了家庭机械通气。主要照顾者均为母亲。高ZBI得分与医疗设备的严重程度和类型无关。高ZBI得分与以下因素之间存在关联：“没有主要照顾者的患者与家庭成员之间的关系未改善”和“出院后额外的医疗设备”。PANAS的结果表明，高ZBI得分者和低ZBI得分者之间的积极态度没有差异。
联系没有主要照顾者的家庭成员至关重要。计划后的额外医疗护理/设备与主要照顾者的护理负担有关。
