Practical Journal of Organ Transplantation(Electronic Version) ›› 2025, Vol. 13 ›› Issue (6): 546-551.DOI: 10.3969/j.issn.2095-5332.2025.06.011

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Qualitative study on the care experience of parents of children undergoing liver transplantation

Jiang Ying,Wang Jing,Chen Yanyan,Gao Wei.    

  1. Organ Transplantation Center of Tianjin First Central Hospital,Tianjin 300192,China.
  • Online:2025-11-20 Published:2025-11-20

亲体肝移植患儿父母照护体验的质性研究

蒋莹,王靖,陈艳艳,高伟   

  1. 天津市第一中心医院器官移植中心,天津 300192
  • 基金资助:
    天津市护理学会 2022 年科研课题面上项目(tjhlky2022YB04)

Abstract:

Objective To understand the long-term care experience of parents of children underwent living donor liver transplantation,and to explore the problems in the nursing process and propose nursing countermeasures,the aim is to improve the quality of family care for children with liver transplantation. Methods The interview outline was preliminarily formulated by referring to relevant literature and combining the research purpose.. Thefinal interview outline,including 7 questions,was determined after consulting experts.. Using purposive samplingmethod,parents of children with liver transplantation who were hospitalized for re-examination at Tianjin First Central Hospital from May 2021 to February 2022 were selected as the research subjects. Using data saturation as the standard,in-depth interviews were conducted with the parents of 18 children with liver transplantation. The data were analyzed according to Colaizzi phenomenological analysis method,and the interview data were transcribed using Nvivo 12.0 software. Results Four themes were identified :changes in life status,emotional experience,concerns about children,differences in external support,and 11 sub-themes were identified:increased care burden,hindered personal development,damaged marital relationship,increased guilt,passive acceptance before surgery,positive coping after surgery,social interaction,restricted school life,adjusted life planning,family and different socialsupports,and unequal medical resources. Conclusion The family care burden of pediatric liver transplantation is heavy,which brings many troubles to the daily work and life of the caregivers,but the external support system is weak. In the future nursing practice,the nursing staff should pay attention to the psychological needs of the patient's parents,face up to the nursing process and pressure,guide them to timely adjust their living conditions,so as to improve the nursing ability,and finally achieve the purpose of improving the quality of life of children with liver transplantation. 

Key words:

Parental liver transplantation, Children with children, Care, Qualitative study

摘要:

目的 深入了解亲体肝移植患儿父母长期的照护体验,探讨照护过程中存在的问题并提出护理对策,以期提高肝移植患儿家庭照护质量。 方法 结合研究目的,查阅相关文献,初步制订访谈提纲,咨询专家后确定最终访谈提纲,共包括 7 个问题。采用目的抽样法,选取于 2021 年 5 月至 2022 年 2 月在天津市第一中心医院住院复查的亲体肝移植患儿父母作为研究对象,最终对 18 例亲体肝移植患儿的父母进行深入访谈。根据 Colaizzi 现象学分析法对资料进行分析,使用 Nvivo 12.0 软件对访谈资料进行转录。 结果 提炼出 4 个主题,分别为生活状态改变、多种情感体验、患儿成长的担忧和外部支持不同。11 个子主题,分别为照护负担沉重、个人发展受阻、家庭及婚姻关系受创、愧疚感增加、手术前被动接受、手术后积极应对、社会交往谨慎、校园生活受影响、人生规划调整、社会支持差异和医疗资源不均。 结论 儿童肝移植家庭照护负担较重,肝移植患儿父母面临日常工作和生活方面的困扰,并且外部支持系统薄弱。在未来的护理实践中,护理人员应关注患儿父母的心理需求,正视照护过程及压力,指导患儿父母适时调整生活状态,从而提高照护能力,最终实现改善肝移植患儿生活质量的目的。

关键词:

亲体肝移植 , 患儿 , 照护 , 质性研究