胆道闭锁患儿住院期间父母照护体验的质性研究
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女,硕士,护师

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国家卫生健康委医药卫生科技发展研究中心国家重点研发计划(2021YFC2701004);上海市科技创新行动计划长三角科技创新共同体领域项目(21002411900);复旦大学-复星护理科研基金项目(FNF202147)


Caregiving experiences of parents of children with biliary atresia during hospitalization:a qualitative study
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    目的 基于慢性病轨迹模式,探讨胆道闭锁患儿住院期间父母的照护体验,为制定针对性的护理支持方案提供参考。 方法 采用现象学研究方法,对19名胆道闭锁住院患儿父母进行半结构式访谈,采用Colaizzi 7步分析法分析访谈资料。 结果 胆道闭锁患儿住院期间不同阶段父母的照护体验可归纳为3 个主题 ,即诊断阶段:疾病认知与自我概念缺乏,情绪反应强烈;术后阶段:支持需求突出,照护负担沉重;出院阶段:希望与压力并存。 结论 胆道闭锁患儿父母在其住院期间不同阶段有着不断变化的复杂照护体验,医护人员应给予针对性的照护支持与指导,以提高患儿健康水平及减轻父母的照护负担。

    Abstract:

    Objective To investigate the caregiving experiences of parents of children with biliary atresia during hospitalization based on the chronic disease trajectory model. Methods Phenomenological method was used in this study, with 19 parents of children with biliary atresia in hospital participating in non-structured interviews.Data were analyzed by using the Colaizzi′s phenomenological methodology. Results The caregiving experiences of parents of children with biliary atresia during hospitalization could be summarized into 3 themes: at diagnosis stage, parents were devoid of disease-related knowledge and self-concept,but had strong emotional response; during postoperative stage, parents had prominent support needs and heavy caregiving burden; at discharge stage, parents fostered hope and stress at the same time. Conclusion The caregiving experiences of parents of children with biliary atresia are complex and ever-changing at different stages of hospitalization, and medical staff should provide targeted care support and guidance to improve the health of the children, and to lessen caregiving burden of parents.

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张成璐,胡晓静,吴颖,鲍莹,蒋文怡.胆道闭锁患儿住院期间父母照护体验的质性研究[J].护理学杂志,2023,38(15):39-43

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  • 收稿日期:2023-03-31
  • 最后修改日期:2023-05-15
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  • 在线发布日期: 2023-12-29