ISSN 2097-6046（网络）
ISSN 2096-7446（印刷）
CN 10-1655/R
主管：中国科学技术协会
主办：中华护理学会
中华急危重症护理杂志

中华急危重症护理杂志 >

2026 , Vol. 7 >Issue 9: 1108 - 1111

DOI: https://doi.org/10.3761/j.issn.2096-7446.2026.09.013

重症护理研究

新生儿巨型脐膨出合并肺动脉高压保守治疗期的家庭支持服务实践

  • 俞君 ,
  • 李建平 ,
  • 吴小花 ,
  • 程晓英
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  • 1 浙江大学医学院附属儿童医院新生儿科/儿童少年健康与疾病国家临床医学研究中心 杭州市 310053
    2 浙江大学医学院附属儿童医院护理部/儿童少年健康与疾病国家临床医学研究中心 杭州市 310053
俞君：女，本科，副主任护师，E-mail：yujunzjuch@zju.edu.cn
作者贡献声明

俞君：论文撰写及修改；李建平：病例资料收集、论文修改；吴小花：研究方案设计、论文修改；程晓英：论文审核

*程晓英，E-mail：chengxiaoying@zju.edu.cn

收稿日期: 2026-04-16

  网络出版日期: 2026-08-31

收起

Family support service practice for a neonate with giant omphalocele complicated by pulmonary hypertension during conservative treatment

  • YU Jun ,
  • LI Jianping ,
  • WU Xiaohua ,
  • CHENG Xiaoying
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  • 1 Department of Neonatology， Children’s Hospital，Zhejiang University School of Medicine/National Clinical Research Center for Children and Adolescent’s Health and Diseases， Hangzhou 310053， China
    2 Nursing Department， Children’s Hospital，Zhejiang University School of Medicine/National Clinical Research Center for Children and Adolescent’s Health and Diseases， Hangzhou 310053， China

Received date: 2026-04-16

  Online published: 2026-08-31

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摘要

总结1例新生儿巨型脐膨出合并肺动脉高压保守治疗期实施家庭支持服务的护理体会。该病例保守治疗周期长、居家照护难度大、家庭心理问题突出。护理要点：基于家庭需求评估，由儿童医疗辅导师主导，联合多学科团队实施亲子陪伴、手足支持、绘本疗愈等干预。经过33 d的家庭参与式照护，家长自我效能感提升，焦虑减轻；能独立完成换药、鼻饲、氧疗等照护操作后顺利出院。随访患儿囊膜愈合良好，无并发症，家庭成员焦虑行为减少，回归日常生活。

关键词： 巨型脐膨出; 肺动脉高压; 家庭支持服务; 儿童医疗辅导

本文引用格式

俞君 , 李建平 , 吴小花 , 程晓英 . 新生儿巨型脐膨出合并肺动脉高压保守治疗期的家庭支持服务实践[J]. 中华急危重症护理杂志, 2026 , 7(9) : 1108 -1111 . DOI: 10.3761/j.issn.2096-7446.2026.09.013

Abstract

We summarized nursing experience of family support service for a neonate with giant omphalocele complicated by pulmonary hypertension undergoing conservative treatment，which was characterized by long-term care，high home-care difficulty，and prominent family psychological issues. Key nursing points were as follows. Based on family needs assessment，the certified child life specialists（CCLS） led multidisciplinary team implemented syste-matic interventions including parent-child companionship，sibling support，and picture book healing. After 33 days of family-integrated care，parental self-efficacy improved，anxiety decreased. The dressing changes，nasogastric feeding and oxygen therapy were independently performed，leading to successful discharge. Follow-up showed good healing of the omphalocele sac with no complications，reduced anxiety behavior among family members，and return to daily life.

Key words： Giant Omphalocele; Pulmonary Hypertension; Family Support Services; Child Life Specialist

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