Suppr超能文献

[特应性皮炎患者的信息需求——一项定性研究]

[Information needs of patients with atopic eczema-a qualitative study].

作者信息

Wahl Josepha, Jost Marion, Apfelbacher Christian

机构信息

Kinder- und Jugendzentrum Coburg, Dr. med. R. Frank und M. Zimmer, Bahnhofstr. 10, 96450, Coburg, Deutschland.

Klinik für Dermatologie, Venerologie und Allergologie, Universitätsklinikum Schleswig-Holstein, Kiel, Campus Kiel, Deutschland.

出版信息

Dermatologie (Heidelb). 2023 Nov;74(11):875-884. doi: 10.1007/s00105-023-05211-9. Epub 2023 Aug 29.

Abstract

INTRODUCTION

Often patient information in atopic eczema (AE) does not meet the criteria of evidence-based patient information. What are the information needs of affected patients?

OBJECTIVE

The aim of the study was to analyze opinions and experiences of AE patients regarding their personal information needs.

METHODS

In all, 16 semi-structured interviews were conducted with patients with AE based on an interview guide. Subsequently the audio-taped interviews were transcribed and analyzed using deductive-inductive methods. Standards of qualitative research were ensured using the consolidated criteria for reporting qualitative research (COREQ).

RESULTS

In all, 21 persons participated in the 16 interviews, including patients and relatives. Gender ratio was 2 : 1 (female/male); age varied between 19 and 75 years. The interviews revealed a gap in care for patient information about AE. Especially the lack of time in the physician-patients encounter was criticized. Many of the affected felt left alone and forced to take a more active role in the search for information and therapy itself. Depending on stage and duration of the disease, some persons had the impression that their search for information was too time-consuming in relation to the possible benefits.

CONCLUSION

Patients perceived their doctor to be the most important contact person during the information seeking process. Within our study group, feeling a lack of a caring contact person as well as a lack of knowledge often led to not complying with a standardized, guideline-orientated therapy and of self-treatment. Filling this care gap seems to be an important approach to optimized patient care.

摘要

引言

特应性皮炎(AE)患者的信息通常不符合循证患者信息的标准。受影响患者的信息需求是什么?

目的

本研究旨在分析AE患者关于其个人信息需求的意见和经历。

方法

基于访谈指南,对AE患者进行了16次半结构化访谈。随后,对录音访谈进行转录,并采用演绎-归纳法进行分析。使用定性研究报告综合标准(COREQ)确保定性研究的标准。

结果

共有21人参与了这16次访谈,包括患者及其亲属。性别比为2∶1(女性/男性);年龄在19岁至75岁之间。访谈揭示了在提供AE患者信息方面存在护理差距。特别是医患会面中时间不足受到了批评。许多患者感到孤立无援,被迫在信息搜索和治疗过程中发挥更积极的作用。根据疾病的阶段和持续时间,一些人觉得相对于可能的益处,他们的信息搜索耗时过长。

结论

患者认为医生是信息寻求过程中最重要的联系人。在我们的研究组中,感到缺乏关心的联系人以及知识不足常常导致不遵守标准化的、以指南为导向的治疗和自我治疗。填补这一护理差距似乎是优化患者护理的重要途径。

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验