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当前位置：国际护理学研究 > 2026年 8卷 (6)期

Open Access Article

International Journal of Nursing Research. 2026; 8: (6) ; 34-40 ; DOI: 10.12208/j.ijnr.20260287.

A phenomenological study of the caregiving experience of caregivers for children receiving home-based enteral tube feeding
家庭肠内营养管饲患儿照护者照护体验的现象学研究

作者： 邹瑜 *, 李晓玉, 左婧, 徐甜, 刘绍勇, 曾慧琳, 占楚仪, 余卓文

深圳市儿童医院消化内科深圳

*通讯作者：邹瑜,单位：深圳市儿童医院消化内科深圳；

发布时间: 2026-06-29 总浏览量: 132

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摘要

目的探讨家庭肠内营养管饲患儿照护者的照护体验与需求，为护理人员制定个性化的出院准备服务及延续护理计划提供参考依据。方法描述性现象学研究，采用目的抽样法，选取深圳市儿童医院的家庭肠内营养管饲患儿照护者作为研究对象，进行面对面半结构式深度访谈。运用Colaizzi七步分析法对访谈内容录音资料进行资料分析。结果基于马斯洛的需求层次理论，归纳为5个主题：身心耗竭与个人生活让位、居家照顾知识与技能缺乏、家庭支持的照顾、渴望被正常看待的尊严诉求、于负重中实现自我价值。结论家庭成员应提升对照护者的家庭支持度，提高其生活质量；在患儿出院前医院应基于互联网+服务平台优化居家管饲患儿出院准备内涵及实施清单；出院后医院可拓展人工智能前景，利用其在医学领域的强大功能，消除照护者居家照护的多种不确定感；建议组织照护者群体患教会，加强照护者心理建设，利用大众传播媒介，提升社会认知水平；鼓励照护者分享照护经历，提高其自我获得感，实现以患儿及照护者需求为中心的医疗服务一体化，提高患儿的生存质量及照护者的体验感。

关键词： 肠内营养；管饲；照护者；质性研究

Abstract

Objective To explore the caregiving experiences and needs of caregivers for children receiving home-based enteral tube feeding (HETF), in order to provide a reference for developing personalized discharge planning and continuing care programs.
Methods A descriptive phenomenological study was conducted. Using purposive sampling, caregivers of HETF children from Shenzhen Children's Hospital were recruited as participants. Face-to-face, semi-structured, in-depth interviews were carried out. The interview data were analyzed using Colaizzi’s seven-step analysis method.
Results Based on Maslow's hierarchy of needs, five themes were identified: 1) physical exhaustion and life disruption; 2) uncertainty and a lack of security in home care; 3) insufficiency of family support and emotional ventilation; 4) experience of social scrutiny and stigma; and 5) finding meaning and self-actualization through caregiving.
Conclusion Family members should enhance support for caregivers to improve their quality of life. Prior to discharge, hospitals should optimize the content and implementation checklist for discharge planning based on “Internet+” service platforms. Post-discharge, the potential of artificial intelligence should be leveraged to mitigate caregivers' uncertainties. Organizing support group meetings for caregivers is recommended to strengthen their psychological resilience, while public media campaigns could be utilized to raise societal awareness. Encouraging caregivers to share experiences can enhance their sense of accomplishment. Ultimately, an integrated patient- and caregiver-centered healthcare service model should be established to improve the quality of life for both the children and their caregivers.

Key words： Enteral nutrition; Tube feeding; Caregivers; Qualitative research

参考文献 References

[1] 中华医学会肠外肠内营养学分会儿科协作组. 中国儿科肠内肠外营养支持临床应用指南[J]. 中华儿科杂志, 2010, 48(6)[2026-01-11].

[2] Olveira G, Ángel Martínez-Olmos M, De Bobadilla B F, Ferrer M, Virgili N, Vega B, Blanco M, Layola M, Lizán L, Gozalbo I. Patients’ and professionals’ preferences in terms of the attributes of home enteral nutrition products in Spain. A discrete choice experiment[J]. European Journal of Clinical Nutrition, 2018, 72(2): 272～280.

[3] Van Den Berg F F, Boermeester M A. Update on the management of acute pancreatitis[J]. Current Opinion in Critical Care, 2023, 29(2): 145～151.

[4] Puntis J W L. Recent advances: Nutritional support at home and in the community[J]. Archives of Disease in Childhood, 2001, 84(4): 295～298.

[5] 石磊, 龚杰, 柳园, 母东煜, 廖欣怡, 曾小庆, 喻佳洁, 胡雯. 我国家庭肠内营养研究文献的计量学分析[J]. 中华临床营养杂志, 2019, 27(2): 76～83.

[6] Thomas A, Sowerbutts A M, Burden S T. The impact of home enteral feeding on the daily lives of people with head and neck cancer: a metasynthesis of qualitative studies[J]. Journal of Human Nutrition and Dietetics: The Official Journal of the British Dietetic Association, 2020, 33(4): 538～549.

[7] Lin C J, Yang H C, Chien A C, Guo W Y, Wu C C, Hung S C, Chen K K, Wu H M, Luo C B, Chu W F, Hong J S, Wu C S F. In-room assessment of intravascular velocity from time-resolved rotational angiography in patients with arteriovenous malformation: a pilot study[J]. Journal of NeuroInterventional Surgery, 2018, 10(6): 580～586.

[8] 陈晓飞, 陈朔晖, 徐建仙. 经皮内镜下胃造瘘患儿家庭肠内营养的护理[J]. 中华护理杂志, 2015, 50(3): 381～383.

[9] 刘明. Colaizzi七个步骤在现象学研究资料分析中的应用[J]. 护理学杂志, 2019, 34(11): 90～92.

[10] 李新, 袁越, 韩月皎, 刘峰, 王亚菲, 柳云, 潘宁. 住院新生儿父亲参与照护需求的Meta整合[J]. 中国护理管理, 2023, 23(8): 1175～1181.

[11] 方玉, 辛晓伟, 王艳莉, 刘妮, 龚丽青, 张小田, 李子禹, 孙艳, 栾春娜, 杨月欣, 石汉平. 肿瘤患者家庭肠内营养治疗的规范化管理[J]. 肿瘤代谢与营养电子杂志, 2017, 4(1): 97～103.

[12] Jukic P N, Gagliardi C, Fagnani D, Venturini C, Orlandoni P. Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients[J]. Clinical Nutrition, 2017, 36(4): 1062～1067.

[13] 胡娇娇, 王建宁, 龚翠颖, 梁慧, 黄秋霞, 张艺. 哮喘患儿家庭照护者照护体验的Meta整合[J]. 中国护理管理, 2023, 23(1): 79～86.

[14] Leo D G, Islam U, Lotto R R, Lotto A, Lane D A. Psychological interventions for depression in adolescent and adult congenital heart disease[J]. Cochrane Database of Systematic Reviews, 2023, 2023(10)[2024-09-25].

[15] 田林, 任绪泽, 涂峥程. 人工智能、机器学习和深度学习在医学诊断中的应用进展[J]. 现代医学, 2024, 52(9): 1480～1484.

[16] 夏雨, 安晓, 薛雅婷, 王红. 智慧医疗在日间化疗患者延续性护理中的应用进展[J]. 中国护理管理, 2022, 22(11): 1743～1746.

[17] 康祎陈, 刘文琳, 丁玎, 王君俏, 赵倩华, 王静. 年轻型痴呆症患者及其照护者疾病体验的质性研究[J]. 中华护理杂志, 2022, 57(13): 1591～1598.

[18] 薛敏, 韩景, 翟晓媛, 周敏. 家庭管饲患者带管生活真实体验的Meta整合[J]. 中国护理管理, 2021, 21(7): 1031～1037.

[19] 孙晋洁, 王银梅, 何伯圣. 炎症性肠病亲属照护者照护体验的质性研究[J]. 全科护理, 2023, 21(27): 3856～3860.

[20] 赵庆华, 黄欢欢, 彭颖, 欧洋利, 蒋思琪, 王春妮, 罗欣, 肖明朝. 住院患者及其家属参与患者安全的体验[J]. 中国护理管理, 2023, 23(7): 964～968.

[21] Green S M, Townsend K, Jarrett N, Westoby C, Fader M. People with enteral tubes and their carers’ views of living with a tube and managing associated problems: A qualitative interview study[J]. Journal of Clinical Nursing, 2019, 28(19～20): 3710～3720.

[22] Mooi N M, Ncama B P. Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study[J]. PLOS ONE, 2020, 15(2): e0228924.

[23] 梅伶俐, 陈朔晖, 胡艳, 翁冬芳, 周金燕. 社会生态系统理论视角下短肠综合征患儿照护者负担体验的质性研究[J]. 中华护理杂志, 2022, 57(6): 718～723.

[24] 史雨, 柳龚堡, 沈国妹, 徐婕, 曹迪, 翟晓文. 儿童专科互联网医院慢病管理服务模式的构建及探索[J]. 复旦学报（医学版）, 2021, 48(4): 527～531.

[25] Rabanal L I, Chatwin J, Walker A, O’Sullivan M, Williamson T. Understanding the needs and experiences of people with young onset dementia: a qualitative study[J]. BMJ Open, 2018, 8(10): e021166.

引用本文

邹瑜, 李晓玉, 左婧, 徐甜, 刘绍勇, 曾慧琳, 占楚仪, 余卓文, 家庭肠内营养管饲患儿照护者照护体验的现象学研究[J]. 国际护理学研究, 2026; 8: (6) : 34-40.

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