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Article(id=1322924457437835377, tenantId=1146029695717560320, journalId=1220038315760373764, issueId=1322924415817757501, articleNumber=null, orderNo=null, doi=10.12102/j.issn.1009-6493.2026.17.020, pmid=null, cstr=null, oa=null, hot=null, price=null, onlineType=0, articleFormat=0, articleType=null, articleTypeStr=null, receivedDate=1767628800000, receivedDateStr=2026-01-06, revisedDate=1783958400000, revisedDateStr=2026-07-14, acceptedDate=null, acceptedDateStr=null, onlineDate=1793339369401, onlineDateStr=2026-10-30, pubDate=1788969600000, pubDateStr=2026-09-10, doiRegisterDate=null, doiRegisterDateStr=null, onlineIssueDate=1793339369401, onlineIssueDateStr=2026-10-30, onlineJustAcceptDate=null, onlineJustAcceptDateStr=null, onlineFirstDate=null, onlineFirstDateStr=null, sourceXml=null, magXml=null, createTime=1793339369401, creator=13701087609, updateTime=1793339369401, updator=13701087609, issue=Issue{id=1322924415817757501, tenantId=1146029695717560320, journalId=1220038315760373764, year='2026', volume='40', issue='17', pageStart='2961', pageEnd='3152', issueExtLink='null', onlineDate='null', pubDate='1788969600000', pubDateStr='2026-09-10', beforeIssueId=null, nextIssueId=null, price=null, status=1, issueComplete=1, articleOrder=1, issueType=-1, specialIssue=null, createTime=1793339359478, creator='13701087609', updateTime=1793343089343, updator='13701087609', preIssue=null, nextIssue=null, articleTotal=null, ext={EN=IssueExt(id=1322940060072542250, tenantId=1146029695717560320, journalId=1220038315760373764, issueId=1322924415817757501, language=EN, specialIssueTitle=, coverIllustrator=null, specialIssueEditor=, specialIssueAbout=), CN=IssueExt(id=1322940060072542251, tenantId=1146029695717560320, journalId=1220038315760373764, issueId=1322924415817757501, language=CN, specialIssueTitle=, coverIllustrator=null, specialIssueEditor=, specialIssueAbout=)}, issueFiles=null, downloadFileDto=null}, startPage=3092, endPage=3097, ext={EN=ArticleExt(id=1322924457651744882, articleId=1322924457437835377, tenantId=1146029695717560320, journalId=1220038315760373764, language=EN, title=Development of a home health management journey map and nursing strategies for patients with tracheoesophageal fistula after "three-tube" interventional procedure, columnId=1220689488284668633, journalTitle=Chinese Nursing Research, columnName=Comprehensive Study, runingTitle=null, highlight=null, articleAbstract=
Objective

To develop a journey map of home health management for patients with tracheoesophageal fistula after "three-tube" interventional procedure,systematically analyze their core experiences and needs at different stages,and propose targeted nursing strategies accordingly.

Methods

From March to August 2025,patients who underwent "three-tube" procedure for tracheoesophageal fistula and their caregivers were selected from the interventional radiology department of a tertiary general hospital in Zhengzhou city for readmission follow-up as study subjects.Semi-structured in-depth interviews were conducted,and the interview data were analyzed using Colaizzi's seven-step analysis method to develop a patient journey map.

Results

A total of 26 sub-themes were summarized from tasks,emotions,pain points dimensions,forming a journey map covering the early discharge period,transitional adaptation period,long-term tube-living period,and rehabilitation sprint period.

Conclusion

The home health management needs of patients with tracheoesophageal fistula after "three-tube" interventional procedure present stage-specific and multidimensional characteristics,with prominent needs for caregiving skill support,psychosocial adaptation,and swallowing safety reconstruction.In the future,phased and systematic transitional nursing strategies can be developed and implemented based on the constructed health management journey map.

, authors=Jingjing CHEN, Yang WANG, Jimei ZHOU, Ximeng LI, Chen CHEN, Kewei REN, authorsList=Jingjing CHEN, Yang WANG, Jimei ZHOU, Ximeng LI, Chen CHEN, Kewei REN, authorCompany=null, correspAuthors=Jingjing CHEN, authorNote=null, correspAuthorsNote=null, copyrightStatement=null, copyrightOwner=null, extLink=null, articleAbsUrl=null, sourceXml=null, magXml=null, pdfUrl=null, pdf=null, pdfFileSize=null, pdfExtLink=null, richHtmlUrl=null, mobilePdfUrl=null, reviewReport=null, pdfFirstPage=null, abstractGraph=null, abstractGraphContent=null, abstractVideo=null, citation=null, cebUrl=null, magXmlContent=null, mapNumber=null, fund=null), CN=ArticleExt(id=1322924459744702581, articleId=1322924457437835377, tenantId=1146029695717560320, journalId=1220038315760373764, language=CN, title=气管食管瘘“三管”介入术后病人居家健康管理旅程地图的绘制及护理对策, columnId=1220689488938980091, journalTitle=护理研究, columnName=综合研究, runingTitle=null, highlight=null, articleAbstract=
目的

绘制气管食管瘘经鼻腔留置营养管、胃肠减压管与脓腔引流管的“三管”介入术后病人居家健康管理的旅程地图，系统分析其在不同阶段的核心体验与需求，并据此提出针对性护理对策。

方法

于2025年3月—8月选取郑州市某三级甲等医院介入科住院复诊的气管食管瘘“三管”术后病人及照顾者作为研究对象，进行半结构式深入访谈，运用Colaizzi 7步分析法对访谈资料进行分析，并绘制病人旅程地图。

结果

从任务、情绪、痛点等维度归纳出26条子主题，并形成涉及出院初期、过渡适应期、长期带管期及康复冲刺期的旅程地图。

结论

气管食管瘘“三管”介入术后病人的居家健康管理需求呈现阶段性、多维度特征，其照护技能支持、心理社会适应及吞咽安全重建需求突出。未来可依据绘制的健康管理旅程地图，制订并实施分阶段、系统性的延续性护理策略。

, authors=陈静静, 王洋, 周纪妹, 李喜朦, 陈晨, 任克伟, authorsList=陈静静, 王洋, 周纪妹, 李喜朦, 陈晨, 任克伟, authorCompany=null, correspAuthors=陈静静, authorNote=null, correspAuthorsNote=
CHEN Jingjing, E-mail:
陈静静，主管护师，硕士研究生，E-mail：
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journalId=1220038315760373764, articleId=1322924457437835377, language=CN, orderNo=4, keyword=旅程地图), Keyword(id=1322924462248702114, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, language=CN, orderNo=5, keyword=质性研究), Keyword(id=1322924462320005283, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, language=CN, orderNo=6, keyword=护理)], refs=[Reference(id=1322924464454906024, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, doi=null, pmid=null, pmcid=null, year=2022, volume=10, issue=2, pageStart=150, pageEnd=153, url=null, language=null, rfNumber=1, rfOrder=0, authorNames=徐璐, 葛冬, 杨卓, journalName=创伤与急危重病医学, refType=null, unstructuredReference=徐璐,葛冬,杨卓.食管瘘内镜治疗研究进展[J].创伤与急危重病医学,2022,10(2):150-153;157., articleTitle=食管瘘内镜治疗研究进展, refAbstract=null), Reference(id=1322924464538792105, tenantId=1146029695717560320, journalId=1220038315760373764, 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authorNames=屈玉洁, 常陆, 屈玉清, journalName=中华现代护理杂志, refType=null, unstructuredReference=屈玉洁,常陆,屈玉清,等.家庭支持护理对老年慢性病患者自我感受及结局事件的影响[J].中华现代护理杂志,2022,28(11):1494-1499., articleTitle=家庭支持护理对老年慢性病患者自我感受及结局事件的影响, refAbstract=null), Reference(id=1322924465885163706, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, doi=null, pmid=null, pmcid=null, year=2022, volume=41, issue=5, pageStart=1283, pageEnd=1292, url=null, language=null, rfNumber=19, rfOrder=18, authorNames=Liao Y H, Ku LE, Liu L F, journalName=Journal of Applied Gerontology, refType=null, unstructuredReference=Liao Y H,Ku LE,Liu L F,et al.The effects of in-home respite care on the burden of caregivers in Taiwan[J].Journal of Applied Gerontology,2022,41(5):1283-1292., articleTitle=The effects of in-home respite care on the burden of caregivers in Taiwan, refAbstract=null), Reference(id=1322924465948078267, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, doi=null, pmid=null, pmcid=null, year=2023, volume=20, issue=12, pageStart=87, pageEnd=93, url=null, language=null, rfNumber=20, rfOrder=19, authorNames=陶朝云, 汤华萍, 卓银霞, journalName=保健医学研究与实践, refType=null, unstructuredReference=陶朝云,汤华萍,卓银霞,等.基于微信小组的同伴教育在老年慢性病患者中的应用效果[J].保健医学研究与实践,2023,20(12):87-93., articleTitle=基于微信小组的同伴教育在老年慢性病患者中的应用效果, refAbstract=null), Reference(id=1322924466031964348, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, doi=null, pmid=null, pmcid=null, year=2025, volume=24, issue=3, pageStart=134, pageEnd=136, url=null, language=null, rfNumber=21, rfOrder=20, authorNames=朱婷婷, 李蒙蒙, journalName=安徽医专学报, refType=null, unstructuredReference=朱婷婷,李蒙蒙.早期吞咽功能训练在食管癌患者术后康复中的应用分析[J].安徽医专学报,2025,24(3):134-136., articleTitle=早期吞咽功能训练在食管癌患者术后康复中的应用分析, refAbstract=null), Reference(id=1322924466128433341, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, doi=null, pmid=null, pmcid=null, year=2024, volume=18, issue=15, pageStart=140, pageEnd=143, url=null, language=null, rfNumber=22, rfOrder=21, authorNames=涂娟, 吴玉萍, 占春丽, journalName=中国现代药物应用, refType=null, unstructuredReference=涂娟,吴玉萍,占春丽.正念减压联合分阶段康复护理对喉癌喉部分切除术后患者吞咽功能及负性情绪的影响[J].中国现代药物应用,2024,18(15):140-143., articleTitle=正念减压联合分阶段康复护理对喉癌喉部分切除术后患者吞咽功能及负性情绪的影响, refAbstract=null)], funds=null, companyList=[AuthorCompany(id=1322924459987972214, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, xref=1, ext=[AuthorCompanyExt(id=1322924460000555127, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, companyId=1322924459987972214, language=EN, country=null, province=null, city=null, postcode=null, companyName=null, departmentName=null, remark=1The First Affiliated Hospital of Zhengzhou University, Henan 450018 China), AuthorCompanyExt(id=1322924460013138040, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, companyId=1322924459987972214, language=CN, country=null, province=null, city=null, postcode=null, companyName=null, departmentName=null, remark=1郑州大学第一附属医院，河南 450018)])], figs=[ArticleFig(id=1322924462437445796, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, language=EN, label=Figure 1, caption=Journey map of home health management for patients with TEF after "three-tube" interventional procedure, figureFileSmall=rVy2hMUa6SDwTEk7H7gEuw==, figureFileBig=+piPBhXxzstSZOagwGwtcQ==, tableContent=null), ArticleFig(id=1322924462500360357, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, language=CN, label=图1, caption=TEF“三管”介入术后病人居家健康管理的旅程地图, figureFileSmall=rVy2hMUa6SDwTEk7H7gEuw==, figureFileBig=+piPBhXxzstSZOagwGwtcQ==, tableContent=null), ArticleFig(id=1322924464270356646, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, language=EN, label=Table 1, caption=

General characteristics of the study participants

, figureFileSmall=null, figureFileBig=null, tableContent=
病人照顾者
编号性别年龄（岁）文化程度居住地工作状态病因带管时长（个月）总复查（次）编号年龄（岁）与病人关系文化程度居住地工作状态每天照顾时间（h）
P1男45高中城市请假外伤8.06C150配偶高中城市无业>8
P2女60初中农村退休肿瘤8.57C235子女本科城市请假4~6
P3男38本科城市请假医源性7.06C358配偶初中城市无业>8
P4女55小学城市无业肿瘤2.01C440子女专科城市请假4~6
P5男62初中城市退休外伤3.01C545配偶专科城市请假6~8
P6男48高中农村请假肿瘤4.03C662配偶小学农村无业>8
P7男35本科城市在职外伤6.55C738子女专科农村在职4~6
P8女67小学农村无业医源性2.01C855配偶初中农村无业>8
P9男42高中城市在职肿瘤4.53C942配偶本科城市在职4~6
P10女58中专城市退休肿瘤5.03C1060父母小学农村无业>8
P11女50初中城市无业外伤2.51C1148子女高中城市在职4~6
P12男65小学农村无业肿瘤3.01C1252配偶初中农村无业>8
P13男47专科城市请假肿瘤1.51
P14女52初中农村无业医源性2.01
P15男40专科城市在职外伤6.54
), ArticleFig(id=1322924464345854119, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322924457437835377, language=CN, label=表1, caption=

研究对象一般资料

, figureFileSmall=null, figureFileBig=null, tableContent=
病人照顾者
编号性别年龄（岁）文化程度居住地工作状态病因带管时长（个月）总复查（次）编号年龄（岁）与病人关系文化程度居住地工作状态每天照顾时间（h）
P1男45高中城市请假外伤8.06C150配偶高中城市无业>8
P2女60初中农村退休肿瘤8.57C235子女本科城市请假4~6
P3男38本科城市请假医源性7.06C358配偶初中城市无业>8
P4女55小学城市无业肿瘤2.01C440子女专科城市请假4~6
P5男62初中城市退休外伤3.01C545配偶专科城市请假6~8
P6男48高中农村请假肿瘤4.03C662配偶小学农村无业>8
P7男35本科城市在职外伤6.55C738子女专科农村在职4~6
P8女67小学农村无业医源性2.01C855配偶初中农村无业>8
P9男42高中城市在职肿瘤4.53C942配偶本科城市在职4~6
P10女58中专城市退休肿瘤5.03C1060父母小学农村无业>8
P11女50初中城市无业外伤2.51C1148子女高中城市在职4~6
P12男65小学农村无业肿瘤3.01C1252配偶初中农村无业>8
P13男47专科城市请假肿瘤1.51
P14女52初中农村无业医源性2.01
P15男40专科城市在职外伤6.54
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气管食管瘘“三管”介入术后病人居家健康管理旅程地图的绘制及护理对策
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陈静静 , 王洋 , 周纪妹 , 李喜朦 , 陈晨 , 任克伟
护理研究 | 综合研究 2026,40(17): 3092-3097
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护理研究 |综合研究 2026 , 40 (17) : 3092 -3097
气管食管瘘“三管”介入术后病人居家健康管理旅程地图的绘制及护理对策
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陈静静 , 王洋, 周纪妹, 李喜朦, 陈晨, 任克伟
作者信息
  • 1郑州大学第一附属医院，河南 450018
通讯作者:
CHEN Jingjing, E-mail:
陈静静，主管护师，硕士研究生，E-mail：
Development of a home health management journey map and nursing strategies for patients with tracheoesophageal fistula after "three-tube" interventional procedure
Jingjing CHEN , Yang WANG, Jimei ZHOU, Ximeng LI, Chen CHEN, Kewei REN
Affiliations
  • 1The First Affiliated Hospital of Zhengzhou University, Henan 450018 China
出版时间: 2026-09-10 doi: 10.12102/j.issn.1009-6493.2026.17.020
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摘要
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目的

绘制气管食管瘘经鼻腔留置营养管、胃肠减压管与脓腔引流管的“三管”介入术后病人居家健康管理的旅程地图，系统分析其在不同阶段的核心体验与需求，并据此提出针对性护理对策。

方法

于2025年3月—8月选取郑州市某三级甲等医院介入科住院复诊的气管食管瘘“三管”术后病人及照顾者作为研究对象，进行半结构式深入访谈，运用Colaizzi 7步分析法对访谈资料进行分析，并绘制病人旅程地图。

结果

从任务、情绪、痛点等维度归纳出26条子主题，并形成涉及出院初期、过渡适应期、长期带管期及康复冲刺期的旅程地图。

结论

气管食管瘘“三管”介入术后病人的居家健康管理需求呈现阶段性、多维度特征，其照护技能支持、心理社会适应及吞咽安全重建需求突出。未来可依据绘制的健康管理旅程地图，制订并实施分阶段、系统性的延续性护理策略。

气管食管瘘  /  居家护理  /  健康管理  /  旅程地图  /  质性研究  /  护理
Objective

To develop a journey map of home health management for patients with tracheoesophageal fistula after "three-tube" interventional procedure,systematically analyze their core experiences and needs at different stages,and propose targeted nursing strategies accordingly.

Methods

From March to August 2025,patients who underwent "three-tube" procedure for tracheoesophageal fistula and their caregivers were selected from the interventional radiology department of a tertiary general hospital in Zhengzhou city for readmission follow-up as study subjects.Semi-structured in-depth interviews were conducted,and the interview data were analyzed using Colaizzi's seven-step analysis method to develop a patient journey map.

Results

A total of 26 sub-themes were summarized from tasks,emotions,pain points dimensions,forming a journey map covering the early discharge period,transitional adaptation period,long-term tube-living period,and rehabilitation sprint period.

Conclusion

The home health management needs of patients with tracheoesophageal fistula after "three-tube" interventional procedure present stage-specific and multidimensional characteristics,with prominent needs for caregiving skill support,psychosocial adaptation,and swallowing safety reconstruction.In the future,phased and systematic transitional nursing strategies can be developed and implemented based on the constructed health management journey map.

tracheoesophageal fistula,TEF  /  home care  /  health management  /  journey map  /  qualitative research  /  nursing
陈静静, 王洋, 周纪妹, 李喜朦, 陈晨, 任克伟. 气管食管瘘“三管”介入术后病人居家健康管理旅程地图的绘制及护理对策. 护理研究, 2026 , 40 (17) : 3092 -3097 . DOI: 10.12102/j.issn.1009-6493.2026.17.020
Jingjing CHEN, Yang WANG, Jimei ZHOU, Ximeng LI, Chen CHEN, Kewei REN. Development of a home health management journey map and nursing strategies for patients with tracheoesophageal fistula after "three-tube" interventional procedure[J]. Chinese Nursing Research, 2026 , 40 (17) : 3092 -3097 . DOI: 10.12102/j.issn.1009-6493.2026.17.020
正文
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气管食管瘘（tracheoesophageal fistula,TEF）是食管与相邻器官间的异常通道，可导致进食饮水呛咳、反复呼吸道及肺部感染[1-2]，严重威胁病人健康。局部麻醉下经鼻腔留置营养管、胃肠减压管与脓腔引流管的“三管”介入技术，因操作简便、能改善营养并促进瘘口愈合，已成为临床广泛应用的治疗方法[3-4]。但因瘘口愈合缓慢，病人术后需长期带管（常持续数月甚至数年），需反复入院复查瘘口并调整管道，健康管理重心逐步由医院转向家庭。居家期间，病人及照顾者面临管道护理、并发症应对、生理不适、心理社会压力及经济负担等多重交织的挑战[5]，非计划再入院风险高，生活质量明显下降。然而，国内外研究多聚焦“三管”治疗及院内护理，对病人出院后漫长而艰辛的居家管理历程缺乏系统关注，其真实体验、动态需求与核心挑战尚未被深入揭示。病人旅程地图（patient journey map）是一种以用户为中心的可视化工具[6-7]，能系统呈现病人在特定历程中的行为、情绪与痛点。因此，本研究采用质性研究方法，深入描绘TEF“三管”术后病人居家健康管理的完整图景，绘制其动态旅程地图，以期为构建精准、连贯的延续性护理支持体系提供关键实证依据。
1　对象与方法
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1.1　研究对象
采用目的抽样法，根据TEF病人的性别、年龄、文化程度、病因、瘘口位置、病程等选择具有代表性的研究对象。于2025年3月—8月选取郑州市某三级甲等医院介入科住院复诊的TEF“三管”术后病人及照顾者为研究对象。病人纳入标准：年龄≥18岁；带管出院时长≥1个月；意识清楚，沟通良好。排除标准：合并严重疾病或终末期病人（预计生存期≤6周）。照顾者纳入标准：年龄≥18岁，为主要家庭照顾者；照顾时间≥1个月且每日>4 h。排除标准：与病人存在雇佣关系。样本量以访谈资料信息饱和为原则，最终纳入病人15例（编号P1~P15）、照顾者12人（编号C1~C12）。本研究经医院伦理委员会批准（审批号：2023-KY-1326-001），所有参与者均知情同意。
1.2　方法
1.2.1　拟定访谈提纲
基于研究目的，通过文献回顾、专家咨询及小组讨论形成初步提纲。为确保提纲的适用性与有效性，对2例符合条件的病人及2名照顾者进行预访谈（预访谈资料不纳入最终分析）。依据预访谈反馈，经研究小组讨论修订，形成正式访谈提纲。病人访谈提纲主要包括：1）您带管生活多长时间了？2）刚出院回到家时，最困难的是什么？3）护理这些管道，您每天需要做什么？遇到过哪些问题？4）带管生活对您有什么影响？5）什么时候让您觉得最难熬、情绪最低落？什么事让您觉得有盼头，看到了希望？6）您希望得到哪些方面的帮助？照护者访谈提纲主要包括：1）您主要帮忙负责哪些事情？怎么安排每天的照顾和生活？2）照护过程中有什么担心和压力？3）为了帮助家人恢复，您每天需要关注病人哪些状况？4）有没有遇到过一些紧急情况？您当时是怎么判断和处理的？5）长期照顾病人对您有什么影响？6）遇到问题不知如何处理时，有人帮您分担吗？7）您最希望医护人员可以给予哪些帮助？
1.2.2　资料收集与质量控制方法
严格遵循质性研究规范，访谈前对研究者进行统一培训。采用一对一半结构式深度访谈，在安静、私密环境进行，时长20~40 min，全程录音并记录非语言信息。在病人住院复查时，经知情同意后进行访谈。访谈中灵活运用追问、复述和澄清等技巧，动态调整提问以深入挖掘真实体验。样本量以访谈信息饱和为原则，直至访谈不再出现新主题为止。
1.2.3　资料分析方法
访谈完成后由2名研究者独立反复听取录音，并在24 h内转录和整理。采用Colaizzi 7步分析法[8]分析访谈内容。
1.3　构建病人旅程地图
根据病人旅程地图构建通用步骤[9-10]，整合前期理论梳理和文献回顾形成初步框架，系统分析质性访谈中获取的病人及照顾者的行为、情绪、需求与痛点等具体信息，梳理居家康复中动态变化的健康管理经历与核心挑战。将质性结果与框架融合并进行可视化设计，绘制初步旅程地图。为保障地图真实性与完整性，邀请1名介入科医生、2名临床护士、1例病人及1名照顾者代表，共同回顾讨论初步地图与提炼主题，结合多方视角修订完善，最终形成结构清晰、能真实反映病人体验的居家健康管理旅程地图。
2　结果
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2.1　研究对象一般资料
最终纳入15例病人及12名主要照顾者。研究对象一般资料见表1。
2.2　访谈结果
访谈共从任务、情绪、痛点等维度归纳出26条子主题。
2.2.1　出院初期
出院后2周内，此阶段参与者从高度依赖医院的专业环境，骤然回归到家庭照护场景。
2.2.1.1　任务
1）学习与护理流程的繁琐：参与者很难掌握并执行每日的管道护理流程。C10：“我要记住哪根是打营养的，哪根是减压的，哪根是引流的，流程复杂，生怕一步做错。”C12：“护士教的时候我在旁边看着，觉得步骤好多，记不住。”P5：“每天光冲洗管子就要好几遍，太麻烦了。”2）照护环境的重新规划。几乎所有家庭都需要重新规划家庭照护环境。P4：“家里一下子变成了小病房，桌上摆满了消毒用品、蛋白粉、营养液和记录本。”P11：“家里到处都放着棉签、纱布、胶带、消毒液，家里像个临时病房。”C4：“为了放营养泵，我特意买了个小推车，把所有的护理用品都归置在一起”。
2.2.1.2　情绪
1）焦虑：面对陌生的照护任务，大部分参与者充满对未知的焦虑。P14：“我们其实不想出院，大夫说可以回家养了，回去时心里空落落的，没有安全感。”C10：“刚回到家那会儿，心里总是不踏实，担心会出啥事，晚上也睡不安稳。”2）紧张。大部分参与者处于持续的压力状态下，对病人的任何不适易反应过度。C12：“他晚上翻个身，我都能醒，赶紧看看他，怕压到、扯到管子。”P8：“老伴给我换鼻贴，我大气都不敢出，他手也抖，我也紧张”。
2.2.1.3　痛点
1）知识与技能的匮乏：尽管出院时有护士指导操作，但实际操作时仍感生疏，面对突发情况无所适从。C4：“护士教的时候好像会了，回家自己一上手，发现全是问题。”C10：“医生说这根减压管要保持负压，我怎么弄都弄不好。”C12：“第一次遇到引流管堵了，我们全家人都慌了，不知道咋办。”2）管道持续不适与活动受限。几乎所有病人均承受着管道带来的鼻腔压迫、疼痛和异物感，以及活动受限。P13：“一边鼻子堵着3根管子，呼吸不畅，头总是晕乎乎的。”P12：“自己洗不成澡，这3根管都没法儿放，生怕弄湿了引起感染。”3）信息支持断层。参与者在居家环境中遇到问题难以获得即时、专业的解答。C10：“晚上发现引流液颜色有点不对，不知道该问谁，只能熬到天亮再打电话去医院。”P12：“我们住的离大医院远，有点小问题也不能总往城里跑，只能自己上网查查瞎琢磨”。
2.2.2　过渡适应期
出院后2周至首次复查前，基础的照护技能已初步掌握，家庭开始尝试建立日常的护理常规。
2.2.2.1　任务
1）固化日常照护流程：大部分照顾者无法掌握固定的日常照护流程。C10：“日常照护还是手忙脚乱，没有固定的流程。”C4：“日常要干很多事儿，不知道咋规划干这些事儿，能不能帮我们做一个类似照护流程的册子。”2）应对日常问题。部分参与者无法应对带管引起的日常问题。C10：“出院后回来自己打饭，自己搭配食物打碎，经常一打就腹泻，不知道啥问题。”C2：“营养管和胃肠减压管各堵了一回，给医生联系后还没有解决问题，最后大老远又跑到医院”。
2.2.2.2　情绪
1）挫败：大部分照顾者遇到问题时挫败感强烈。C10：“出院后一直是我照顾他，没过几天就感染发烧，心情一下子掉到谷底。”C12：“她出院后想让她吃点好的，用破壁机给她做好吃的，结果刚打完饭她立马肚子不舒服，觉得自己好失败呀。”2）无助。有些病人首次出现急性并发症，给病人及照顾者带来强烈的生命威胁感和无助感。C7：“刚出院回来胃肠减压管堵了，看着爸爸痛苦的样子，我们却什么都做不了，那种无助感，这辈子都忘不了。”P11：“得这个病我都没那么怕过，前几天并发感染高烧不退，我是真怕了”。
2.2.2.3　痛点
1）感染风险威胁：部分参与者对感染的害怕贯穿日常。C12：“最怕他发烧，一发烧就怀疑是管道感染了。”P4：“前几天引流液变得有点浑浊，还有异味，我们吓坏了，赶紧就来医院了。”2）自我形象紊乱与社交回避。病人因外露的管道感到自卑，开始主动回避社交活动。P13：“我以前的同事朋友想来看我，我都找理由推掉了。”P4：“这3根管子杵在鼻子里，又胀又痛，说话鼻音也重，感觉自己像个怪物。”P5：“出门必须戴口罩还穿个高领子的衣服把管子藏到里面，要不然就不出去”。
2.2.3　长期带管期
首次复查后至少1根关键管道要拔除，带管生活持续数月甚至更长时间。
2.2.3.1　任务
1）持续的健康监测：大部分照护者日常照护成为重复性劳动，出现健康监测疲乏，对指标变化的敏感度因习惯而下降。C1：“开始还每天记引流液多少，后来慢慢就疲了，只要没有明显不对劲就算了。”C8：“每天就是看看管子还在不在，引流通畅不通畅，久了也就那样了。”2）长期而精细的营养管理。为促进瘘口愈合、维持身体抵抗力，参与者长期致力于确保充足、均衡的营养摄入，并应对由此带来的胃肠道反应等挑战。P10：“吃不了饭，只能‘打饭’，体重一直上不来，不知道咋调整营养配置，愁死人。”P15：“帮我们想想办法吧，营养跟不上，伤口就难长好。”C8：“便秘和腹泻轮流来，肠胃变得特别娇气，不知道怎么办才好，人都瘦脱相了。”
2.2.3.2　情绪
1）身心耗竭感：大部分参与者感到极度疲惫，情感趋于麻木，对生活失去热情。P6：“已经习惯了，但也烦透了。感觉生活被这几根管子绑架了，看不到尽头。”C5：“又要上班，又要照顾他，感觉自己被撕成了两半，快要被拖垮了。”2）角色缺失与无价值感。病人因长期无法履行家庭与社会角色，产生强烈的自我否定与负罪感。P15：“我是家里顶梁柱，现在什么事都做不了，还要拖累家人，觉得自己是个累赘。”P10：“不能给儿女带孩子，不能帮家里干活，反而要他们费心照顾我，我心里过意不去啊”。
2.2.3.3　痛点
1）沉重的照护负担：长期的照护责任对照顾者造成不可逆的损耗。C8：“我自己的老毛病都没时间看，长时间没出过远门，朋友也越来越少。”C9：“从生病到现在已经花了十几万了，后续还有反复的复查，经济压力真的很大。”2）循环的复查应对。参与者期望简单化复查流程。C1：“我家住得远，每次复查天不亮就得起床赶车，路上颠簸几个小时，到医院排队住院、检查，一趟下来，病没好，人先累趴下了。”C9：“上次折腾了一圈去住院复查瘘口，第2天做了个造影，瘘口没有长好就让出院回家继续带管。这一趟真的太折腾了，可是不去又不行。现在有没有什么好的仪器或软件不用住院就能在家远程复查”？
2.2.4　康复冲刺期
1根管道拔除至全部管道拔除后，本阶段是病人从依赖管道生存向完全经口进食与正常生活过渡的最终阶段。
2.2.4.1　任务
1）吞咽功能重建：病人拟拔除营养管之前半个月可先试验经口进食，大部分病人出现对经口进食的恐惧，进食的习惯也有所改变。P3：“喉咙好像有‘记忆’，一到要咽东西就自动紧张、收缩。”P7：“我不是不想吃，食物到我嘴巴里后，就是吞不下去。”2）胃肠道功能再适应。试验经口进食后，病人常遭受胃肠道不耐受情况。P2：“肠胃好像不习惯了，吃一点东西就觉得胀，有时候还会腹泻。”C11：“她消化功能不太好，食物吃下去没多久就开始拉肚子，整个人都拉虚脱了”。
2.2.4.2　情绪
1）隐忧：尽管康复在望，参与者内心仍潜藏着对远期效果及生活能否真正回归正常的怀疑与不安。C6：“既盼着他多吃点好的，又怕他吃了出问题再把之前拔了的管子再插上。”C3：“有时会想，这次是熬过来了，以后瘘口会不会又裂开？”2）恐惧。长期禁食和既往进食、饮水呛咳的痛苦记忆，使部分病人在尝试进食时产生显著的心理障碍。P2：“医生让试着从喝水、喝米汤开始，看着水真不敢咽。”P1：“好久没正经吃饭，有点不敢吃了，怕再呛着。”3）警觉。几乎所有病人担心再瘘再复发，行为上趋于过度警觉。P3：“每次吞咽都特别小心，怕再呛着再瘘了。”C11：“他咳嗽一声，我们全家心都一揪”。
2.2.4.3　痛点
1）个体化饮食方案缺乏：参与者迫切需要针对“试进食阶段”的个体化饮食方案。P1：“医生只说‘慢慢吃，从流质开始’，但‘慢慢’是多慢？我们需要详细的‘说明书’。”C3：“不太清楚都能吃点啥，只敢喝清汤。”2）实时症状反馈渠道缺失。参与者在居家环境中缺乏实时症状反馈渠道。C6：“医生太忙了，有问题时我给他们打电话，他们也接不到。”C3：“最希望医院能有个快速通道或者联系人，在我们拿不准他咳嗽是不是正常、该不该进食的时候，能随时问一下”。
2.3　构建的病人旅程地图
通过回顾气管食管瘘“三管”术后相关文献[5]，结合临床实践、疾病康复特点、多学科专家小组讨论及前期质性访谈结果，将TEF病人居家健康管理旅程划分为4个阶段：出院初期、过渡适应期、长期带管期及康复冲刺期。在此基础上，通过系统分析本研究所获得的质性资料，将不同阶段病人在“任务”“情绪”“痛点”等维度的具体体验与关键挑战进行提炼、整合与视觉转化，最终绘制形成“TEF‘三管’介入术后病人居家健康管理旅程地图”，见图1。该地图直观、动态地呈现了病人在漫长居家康复历程的核心经历与需求演变。
3　讨论
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3.1　构建“三管”专项技能阶梯式培训与即时支持体系，破解居家照护技能壁垒
本研究结果显示，在居家早期与过渡适应期，病人及照顾者普遍面临“知识与技能的匮乏”及“信息支持断层”的困境，直接导致焦虑加剧和非计划性再入院。系统化、可及性强的技能训练与持续支持是提升居家照护安全与质量的关键［11-12］。因此，需建立贯穿院内至居家的技能支持体系。具体而言，在出院准备期，应开发结构化、可视化培训材料并配套可扫码的居家专用管道标识，为居家操作时扫码即可准确获取可视化指引；拟出院前，通过模拟训练、回授法与“笑脸评价法”相结合，形成“教学-反馈-改进”的闭环培训模式，提升技能转化质量与人文关怀；出院后，则需建立由专科护士主导的线上支持网络，提供7 d×24 h应急响应及体系化知识推送，实现专业支持的持续可及。国内外研究表明，远程护理支持能有效缓解居家病人的焦虑，并提高问题处理的及时性［13-14］。当前，病人家庭常依赖过载且良莠不齐的网络信息进行决策，存在较大风险［15-16］。未来可基于此支持体系，整合形成规范、权威且形式多样的“三管”居家照护信息资源库，从而将专业护理能力有效延伸至家庭场景。
3.2　搭建心理社会支持与照护负担缓冲网络，应对长期带管的身心耗竭与社会隔离
本研究显示，从过渡适应期至长期带管期，病人普遍经历“自我形象紊乱与社交回避”，并产生“角色缺失与无价值感”；同时，照顾者面临“沉重的照护负担”，双方均出现“身心耗竭感”。这种长期的身心压力与社交退缩，不仅严重影响病人的生活质量和康复信心，还可能导致照顾者出现抑郁、焦虑及自身健康问题。研究表明，慢性病病人的心理社会适应与其生理康复同等重要，而照顾者负担是预测病人再入院和不良预后的关键因素[17-18]。因此，亟需构建多层次、主动式的心理社会支持与照护负担缓解体系。首先，在院内外衔接环节，应引入基于积极心理学和认知行为疗法的结构化干预，如开展带管生活适应工作坊，帮助病人及家属正视并接纳疾病状态，重构自我价值感。其次，建立“医院-社区-家庭”联动的社会支持网络，可借鉴国内外“喘息服务”[19]和同伴支持模式[20]，招募康复良好的病人作为志愿者提供经验分享与情感支持，同时链接社区资源为照顾者提供短期替代照护，减轻持续照护压力。再者，优化复查流程，利用远程医疗技术探索“云端门诊”，经专业团队初步评估后决定是否来院，减少非必要奔波与等候。最终，通过专业心理支持、同伴互助与社会服务资源的有机整合，为病人家庭构建缓冲压力、促进社会再融入的支持性环境。
3.3　实施基于分期的个体化营养与康复训练方案，助力吞咽功能安全重建
研究结果发现，在康复冲刺期，病人面临“吞咽功能重建”与“胃肠道功能再适应”的核心任务，却普遍缺乏“个体化饮食方案”，并伴随“对经口进食的恐惧”和“警觉”。这种“知信行”障碍易致试进食失败、营养不良持续或发生误吸、再瘘等严重并发症。国内外研究强调，吞咽康复需精准评估、循序渐进，且心理与生理并重，标准化指导远不能满足个体化需求[21-22]。因此，应建立贯穿长期带管期至康复冲刺期的阶梯式个体化营养与吞咽康复管理方案。首先，在拔除营养管前，即应启动吞咽肌群的间接训练（如口腔操、Shaker训练等）和营养状况的精细化调整，为后续经口进食储备生理基础。其次，试进食启动期，由多学科团队基于内镜或造影评估，共同制定“一人一策”方案，详细规定食物性状、进食量、速度、体位及观察要点，形成可执行的“饮食处方”。同时，强化心理行为干预，采用系统脱敏疗法结合正念进食训练，逐步消除吞咽恐惧。建立便捷线上咨询平台（如专科护士管理的专用微信群），确保病人居家试进食过程中遇见呛咳、消化不良等问题时能获得即时专业指导，避免盲目处理或中断进程。通过上述结构化、支持性康复路径，可系统性降低再瘘风险，提升脱管成功率与康复信心。
4　小结
收起
本研究通过病人旅程地图，从任务、情绪、痛点、机会点四维度呈现了TEF“三管”术后病人出院初期、过渡适应期、长期带管期及康复冲刺期的居家管理全貌与核心困境。提示医护人员应针对不同阶段的照护技能匮乏、身心耗竭与社会隔离、吞咽重建困难等共性挑战，构建阶梯式技能培训与即时支持体系、多层次心理社会支持网络及分阶段个体化康复方案。但受样本量与区域限制，结论普适性有待验证。未来可扩大样本量开展多中心纵向研究，形成标准化、可推广的临床护理路径，以全面提升此类病人的康复质量与生活品质。

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2026年第40卷第17期
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doi: 10.12102/j.issn.1009-6493.2026.17.020
  • 接收时间：2026-01-06
  • 首发时间：2026-10-30
  • 出版时间：2026-09-10
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  • 收稿日期：2026-01-06
  • 修回日期：2026-07-14
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    1郑州大学第一附属医院，河南 450018

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CHEN Jingjing, E-mail:
陈静静，主管护师，硕士研究生，E-mail：
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https://castjournals.cast.org.cn/joweb/hlyj/CN/10.12102/j.issn.1009-6493.2026.17.020
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2种不同金属材料的力学参数
科
Family		 属数
Number of
genus		 种数
Number of
species		 占总种数比例
Percentage of
total species (%)		 属
Genus		 种数
Number of
species		 占总种数比例
Percentage of total
species (%)
鹅膏菌科Amanitaceae 2 11 5.26 鹅膏菌属 Amanita 10 4.78
小菇科 Mycenaceae 2 12 5.74 丝盖伞属 Inocybe 5 2.39
多孔菌科 Polyporaceae 8 14 6.70 蜡蘑属 Laccaria 5 2.39
红菇科 Russulaceae 3 23 11.00 小皮伞属 Marasmius 6 2.87
小菇属 Mycena 11 5.26
光柄菇属 Pluteus 5 2.39
红菇属 Russula 17 8.13
栓菌属 Trametes 5 2.39
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