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青少年炎症性肠病患者照顾者的照顾经历:一项定性元分析

Caregiving Experiences of Caregivers of Adolescents With Inflammatory Bowel Disease: A Qualitative Meta-Synthesis.

作者信息

Xu Huan, Wu Chao, Chen Changchang, Yan Bo, Zha Ning, Zhang Kai, Liu Fang, Lang Hongjuan

机构信息

School of Nursing, Shaanxi University of Chinese Medicine, Xianyang, China.

Department of Nursing, Air Force Medical University School of Nursing, Xi'an, China.

出版信息

Nurs Open. 2025 Jul;12(7):e70267. doi: 10.1002/nop2.70267.

Abstract

BACKGROUND

Inflammatory Bowel Disease (IBD) is a chronic condition that significantly affects the physical and mental health of adolescents. Caregivers are crucial in the treatment process, offering both physical care and emotional support. Caring for adolescents with IBD can significantly affect caregivers' physical, psychological and daily lives, presenting a range of emotional, financial and practical challenges.

AIMS

To explore and integrate the caregiving experiences of caregivers of adolescents with IBD, in order to inform future caregiving support and intervention strategies.

DESIGN

A systematic evaluation and synthesis of qualitative studies was conducted based on ENTREQ guidelines.

METHODS

A systematic search was performed in PubMed, Embase, Cochrane Library, Web of Science, CINAHL, PsyINFO, CNKI, Wangfang and VIP for qualitative studies on the caregiving experiences of caregivers of adolescents with IBD, from the start of the research until March 14 2025. The quality of the literature was assessed using the Joanna Briggs Institute's quality assessment criteria for qualitative research, and included studies were integrated using a pooled approach.

RESULTS

In total, nine studies were included, from which 69 themes were extracted. The findings were grouped into five main themes and 12 subthemes: Psychological and emotional challenges; Heavy caregiving burden; Multiple challenges; Indispensable external support; Positive progress.

CONCLUSIONS

Caregivers of adolescents with IBD face numerous challenges. Healthcare professionals should recognise the varied needs of these caregivers and develop tailored support programmes to help alleviate psychological stress and enhance caregiving quality. Additionally, the Internet and community platforms can be utilised to establish a family support system, ensuring the well-being of both caregivers and adolescents.

NO PATIENT OR PUBLIC CONTRIBUTION

This study is a meta-synthesis and does not require relevant contributions from patients or the public.

TRIAL REGISTRATION

PROSPERO number: CRD 420250654435.

摘要

背景

炎症性肠病(IBD)是一种慢性疾病,严重影响青少年的身心健康。照顾者在治疗过程中至关重要,既要提供身体护理,也要给予情感支持。照顾患有IBD的青少年会对照顾者的身体、心理和日常生活产生重大影响,带来一系列情感、经济和实际挑战。

目的

探索并整合患有IBD的青少年照顾者的照顾经历,以便为未来的照顾支持和干预策略提供参考。

设计

基于ENTREQ指南对定性研究进行系统评价和综合分析。

方法

在PubMed、Embase、Cochrane图书馆、科学网、CINAHL、PsyINFO、中国知网、万方和维普上进行系统检索,以查找自研究开始至2025年3月14日关于患有IBD的青少年照顾者照顾经历的定性研究。使用乔安娜·布里格斯研究所的定性研究质量评估标准对文献质量进行评估,并采用汇总方法对纳入的研究进行整合。

结果

共纳入9项研究,从中提取了69个主题。研究结果分为五个主要主题和12个子主题:心理和情感挑战;沉重的照顾负担;多重挑战;不可或缺的外部支持;积极进展。

结论

患有IBD的青少年照顾者面临诸多挑战。医疗保健专业人员应认识到这些照顾者的不同需求,并制定量身定制的支持计划,以帮助减轻心理压力并提高照顾质量。此外,可以利用互联网和社区平台建立家庭支持系统,确保照顾者和青少年的福祉。

无患者或公众参与

本研究是一项元综合分析,不需要患者或公众的相关贡献。

试验注册

PROSPERO编号:CRD 420250654435。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4a1b/12204846/b3cf50c889d5/NOP2-12-e70267-g001.jpg

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