International Journal of Nursing Research
International Journal of Nursing Research. 2026; 8: (6) ; 10.12208/j.ijnr.20260287 .
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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; ；
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。
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.
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