Expression of patient and caregiver uncertainty in view of decision-making in online health communities

IF 3.1 2区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Patient Education and Counseling Pub Date : 2025-01-26 DOI:10.1016/j.pec.2025.108659
Sarah Bigi , Vittorio Ganfi , Sibilla Parlato , Valentina Piunno , Maria Grazia Rossi
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Abstract

Objectives

On the backdrop of the current debate on shared-decision making in healthcare, we are interested in understanding how uncertainty is managed when patients and/or their caregivers resort to online health communities (OHCs) for advice regarding decisions on aspects of the disease they are not fully sure of. More specifically, we present initial results concerning the expression of uncertainty in OHCs regarding decisions that have to be made about a specific illness. Our goal is to observe how patients and/or their caregivers express uncertainty regarding information they received from specialists. This can help us understand how non-experts try to cope with information they do not fully understand.

Methods

Based on a collection of interactional data taken from two Italian OHCs, our analysis focuses on the sequences in which someone asks for advice on a certain line of action and obtains an answer. We follow a mainly qualitative approach, which includes case-based qualitative analyses. More specifically, we observe uses and functions of some lexical items (evidentemente (lit., evidently), teoricamente (lit., theoretically)) and syntactic structures (specifically clauses containing the verb dire (to say)) that convey a sense of uncertainty in relation to information provided by others.

Results

Our results show different types of uncertainty, providing insights into the effort non-experts make in dealing with expert knowledge and unclear situations determined by the illness and its management.

Implications for clinical practice

Our results can be used to improve healthcare professionals’ training regarding their role as mediators between specialized and everyday knowledge.
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患者和护理人员对在线健康社区决策的不确定性表达。
目的:在当前关于医疗保健共同决策的辩论的背景下,我们感兴趣的是了解当患者和/或他们的护理人员就他们不完全确定的疾病方面的决策求助于在线健康社区(ohc)时如何管理不确定性。更具体地说,我们提出了关于OHCs中关于必须对特定疾病做出决定的不确定性表达的初步结果。我们的目标是观察患者和/或他们的护理人员如何表达他们从专家那里得到的信息的不确定性。这可以帮助我们理解非专家如何处理他们不完全理解的信息。方法:基于来自两家意大利ohc的交互数据集合,我们的分析侧重于某人就某条行动线征求意见并获得答案的序列。我们主要采用定性方法,其中包括基于案例的定性分析。更具体地说,我们观察了一些词汇项目(evidence(显然),teoricamente(理论上))和句法结构(特别是包含动词dire(说)的从句)的使用和功能,这些词汇项目传达了与他人提供的信息相关的不确定感。结果:我们的结果显示了不同类型的不确定性,为非专家在处理由疾病及其管理决定的专家知识和不明确情况时所做的努力提供了见解。对临床实践的启示:我们的研究结果可用于改善医疗保健专业人员在专业知识和日常知识之间的中介作用方面的培训。
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来源期刊
Patient Education and Counseling
Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生
CiteScore
5.60
自引率
11.40%
发文量
384
审稿时长
46 days
期刊介绍: Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.
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