[1]胡佳裔,唐春燕,严谨,等.巨膀胱-小结肠-肠蠕动不良综合征学龄期儿童患病体验的质性研究[J].解放军护理杂志,2021,38(12):42-45.[doi:10.3969/j.issn.1008-9993.2021.12.011]
　HU jiayi,TANG chunyan,YAN jin,et al.Lived Experience of School-age Children During Treatment of Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome:A Phenomenological Inquiry[J].Nursing Journal Of Chinese People’s Laberation Army,2021,38(12):42-45.[doi:10.3969/j.issn.1008-9993.2021.12.011]
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巨膀胱-小结肠-肠蠕动不良综合征学龄期儿童患病体验的质性研究()
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《解放军护理杂志》[ISSN:2097-1826/CN:31-3186/R]

卷:
38
期数:
2021年12期
页码:
42-45
栏目:
研究荟萃
出版日期:
2021-12-15

文章信息/Info

Title:
Lived Experience of School-age Children During Treatment of Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome:A Phenomenological Inquiry
文章编号:
1008-9993(2021)12-0042-04
作者:
胡佳裔1; 唐春燕2; 严谨1; 贺晨1; 巩树梅1
1.上海交通大学医学院附属新华医院 儿消化营养科,上海 200092; 2.上海交通大学医学院附属新华医院 儿普外科
Author(s):
HU jiayi1; TANG chunyan2; YAN jin1;  HE chen1; GONG shumei1
1.Pediatric Gastroenterology & Nutrition Ward,Xin Hua Hospital Affiliated to Shang Hai Jiao Tong University School of Medicine,Shanghai 200092,China; 2.Pediatric Surgery,Xin Hua Hospital Affiliated to Shang Hai Jiao Tong University School of Medicine
关键词:
巨膀胱-小结肠-肠蠕动不良综合征;  学龄期;  管饲喂养;  肠外营养
Keywords:
megacystis-microcolon-intestinal hypoperistalsis syndrome;  school-age;  tube feeding;  parenteral nutrition
分类号:
R473.72
DOI:
10.3969/j.issn.1008-9993.2021.12.011
文献标志码:
A
摘要:
目的 探讨巨膀胱-小结肠-肠蠕动不良综合征(megacystis-microcolon-intestinal hypoperistalsis syndrome,MMIHS)学龄期儿童的患病体验,以期为此类患者提供个性化心理护理或干预提供指导。方法 2020年5-8月,采用目的抽样法选取上海市某三级甲等综合性医院儿消化营养科收治的MMIHS学龄期患儿为研究对象。采用半结构式深度访谈法,访谈了4名具同质性患儿,并依据诠释现象学资料分析法予以分析。结果 MMIHS学龄期患儿的患病体验包括3大主题:难以承受生活受限的压力、多样的负性情绪及渴望正常社会交往。结论 医护人员通过了解MMIHS学龄期患儿的心理体验,评估其身心反应及护理需求等,给予以家庭为中心的喂养模式,提高出院准备度,回归正常生活; 给予陪伴关爱,提高治疗护理技术,改善其不良情绪; 加强科普宣传,提升社会接受度,进而促进患儿疾病及其社会功能的康复。
Abstract:
Objective To explore the live experience of school-age children during treatment of megacystis-microcolon-intestinal hypoperistalsis syndrome(MMIHS)and to provide reference for the tailored nursing plan of the patients.Methods From May to August 2020,school-age MMIHS children admitted to the Department of Pediatric Digestive Nutrition in tertiary A hospital in Shanghai was selected by convenience sampling method.Qualitative,semi-structured,in-depth interviews were conducted on four children with homogeneous disease condition.The interview transcripts were analyzed by interpretative phenomenological analysis method.Results After data analysis and comparison,school-age children with MMIHS had experienced three main situations,such as unbearable pressure from lived constraints,diverse negative emotions,and desire for normal social life.Conclusions This information is important for health care givers that they can assess children’s physical problems and nursing needs,and then can provide a form of family-centered feeding,improve readiness for discharge,and encourage them to return to normal life.Constructive companionship from parents or caregivers,and improvement of treatment and nursing techniques,which would improve children emotions.Better public education of the disease can improve the social acceptance of children with MMIHS.These efforts would support children with MMIHS and enhance their opportunity to become inclusive in the society easily.

参考文献/References:

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备注/Memo

备注/Memo:
【 收稿日期 】 2021-08-30 【 修回日期 】 2021-11-09
【 基金项目 】 上海市教委护理高原学科项目(Hlgy1815kyx); 新华医院护理学科建设项目(HLXKRC2021003)
【 作者简介 】 胡佳裔,本科,护师,从事儿消化营养科护理工作
【 通信作者 】 巩树梅,电话:021-25078379
更新日期/Last Update: 2021-12-20