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先天性巨结肠婴儿家庭反流灌肠管理中照顾者负担体验的定性研究。

A qualitative study on the caregiver burden experience in home reflux enema management of infants with congenital megacolon.

机构信息

Department of Pediatric Surgery, Nurse-in-charge, Fujian Children's Hospital (Fujian Branch of Shanghai Children's Medical Center), College of Clinical Medicine for Obstetrics & Gynecology and Pediatrics, Fujian Medical University, Fuzhou, Fujian, China.

Department of Nursing, Associate professor, Fujian Children's Hospital (Fujian Branch of Shanghai Children's Medical Center), College of Clinical Medicine for Obstetrics & Gynecology and Pediatrics, Fujian Medical University, Fuzhou, Fujian, China.

出版信息

Int J Qual Stud Health Well-being. 2024 Dec;19(1):2289225. doi: 10.1080/17482631.2023.2289225. Epub 2023 Dec 6.

Abstract

OBJECTIVE

This study aims to explore the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema. The findings will provide a basis for developing targeted and effective nursing interventions.

METHODS

A phenomenological research approach was employed. From October 2022 to January 2023, semi-structured in-depth interviews were conducted with 12 caregivers of infants with congenital megacolon undergoing home reflux enema in a tertiary paediatric hospital in Fujian Province. The collected data were analysed and organized using the Colaizzi's 7-step analysis method, leading to the identification of key themes.

RESULTS

The analysis yielded three major themes concerning the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema: inadequate disease-related knowledge, presence of multiple pressures during the caregiving process, and a desire for greater support.

CONCLUSIONS

This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung's disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. It is recommended to implement positive psychological interventions based on the PERMA model and incorporate "Internet + collaborative nursing" to provide caregivers with professional knowledge, address their pressures and needs, and promote their well-being while enhancing nursing abilities.

摘要

目的

本研究旨在探讨先天性巨结肠患儿行家庭反流灌肠时照顾者的负担体验。研究结果将为制定有针对性和有效的护理干预措施提供依据。

方法

采用现象学研究方法,2022 年 10 月至 2023 年 1 月,对福建省某三级儿童医院 12 例先天性巨结肠患儿行家庭反流灌肠的照顾者进行半结构式深入访谈。采用 Colaizzi 的 7 步分析法对收集到的资料进行分析整理,得出关键主题。

结果

分析结果得出照顾者在照顾先天性巨结肠患儿行家庭反流灌肠时的负担体验主要有 3 个主题:疾病相关知识不足、照顾过程中存在多种压力、希望得到更多支持。

结论

本研究通过对 12 例行家庭反流灌肠的先天性巨结肠患儿照顾者进行定性访谈,深入了解了出院后行家庭反流灌肠患儿照顾者的感受。建议实施基于 PERMA 模式的积极心理干预,并结合“互联网+协同护理”,为照顾者提供专业知识,解决其压力和需求,促进其幸福感,同时提高护理能力。

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