How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study.

IF 3.5 Q1 HEALTH CARE SCIENCES & SERVICES JMIR infodemiology Pub Date : 2025-01-16 DOI:10.2196/59625
Fiorella Huijgens, Pascale Kwakman, Marij Hillen, Julia van Weert, Monique Jaspers, Ellen Smets, Annemiek Linn
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Abstract

Background: Patients with cancer increasingly use the internet to seek health information. However, thus far, research treats web-based health information seeking (WHIS) behavior in a rather dichotomous manner (ie, approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in WHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about WHIS and can lead to better designed web-based health platforms.

Objective: This study explored patterns of motivations and emotions behind the web-based information seeking of patients with cancer at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by WHIS via a scenario-based, think-aloud approach.

Methods: In total, 15 analog patients were recruited, representing patients with cancer, survivors, and informal caregivers. Imagining themselves in 3 scenarios-prediagnosis phase (5/15, 33%), treatment phase (5/15, 33%), and survivor phase (5/15, 33%)-patients were asked to search for web-based health information while being prompted to verbalize their thoughts. In total, 2 researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analog patients' experiences during WHIS.

Results: Overarching motives for WHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, whereas this shifted more toward affective needs in the subsequent disease stages. Analog patients' WHIS approaches varied from exploratory to focused or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. WHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions.

Conclusions: This study provides valuable insights into the motivations of patients with cancer underlying WHIS and the emotions experienced at various stages of the disease trajectory. Understanding patients' search patterns is pivotal in optimizing web-based health platforms to cater to specific needs. In addition, these findings can guide clinicians in accommodating patients' specific needs and directing patients toward reliable sources of web-based health information.

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癌症患者如何使用互联网搜索健康信息:基于场景的有声思考研究。
背景:癌症患者越来越多地使用互联网寻求健康信息。然而,到目前为止,研究以相当二分的方式对待基于网络的健康信息寻求(WHIS)行为(即接近或避免),并且未能捕捉患者在整个疾病轨迹中参与WHIS时所经历的动态性质和演变动机。洞察可用于支持患者与提供者就卫生信息系统进行有效的沟通,并可导致更好地设计基于web的健康平台。目的:本研究探讨癌症患者在其疾病轨迹的不同阶段的网络信息寻求背后的动机和情绪模式,以及通过基于场景的、有声思考的方法,WHIS所引发的认知和情绪反应。方法:共招募了15名模拟患者,分别代表癌症患者、幸存者和非正式护理人员。想象自己处于3种情景——诊断前阶段(5/ 15,33 %)、治疗阶段(5/ 15,33 %)和幸存者阶段(5/ 15,33 %)——患者被要求搜索基于网络的健康信息,同时被提示用语言表达他们的想法。总共有2名研究人员独立编码会议,将代码分类为更广泛的主题,以理解模拟患者在WHIS期间的经历。结果:WHIS的主要动机包括减少不确定性、寻求安慰和获得授权。在疾病发展初期,患者主要表现为认知需求,而在随后的疾病阶段,这种需求更多地转向情感需求。模拟患者的WHIS方法从探索性到集中性或两者的结合各不相同。当面对具有挑战性的认知或情感内容时,他们会调整搜索策略。WHIS引发了各种各样的情绪,在整个搜索过程中波动不定。复杂的、对抗性的和意外的信息主要引起负面情绪。结论:本研究提供了有价值的见解,以了解癌症患者潜在的WHIS动机和在疾病轨迹的各个阶段所经历的情绪。了解患者的搜索模式对于优化基于网络的健康平台以满足特定需求至关重要。此外,这些发现可以指导临床医生适应患者的特定需求,并引导患者获得基于网络的可靠健康信息来源。
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