Huijgens Fiorella, Kwakman Pascale, Hillen Marij, van Weert Julia, Jaspers Monique, Smets Ellen, Linn Annemiek
Department of Medical Psychology, Amsterdam University Medical Centers, location Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands.
Quality of Care, Amsterdam Public Health, Amsterdam, Netherlands.
JMIR Infodemiology. 2025 Jan 16;5:e59625. doi: 10.2196/59625.
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.
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.
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.
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.
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.
癌症患者越来越多地通过互联网寻求健康信息。然而,到目前为止,研究对基于网络的健康信息寻求(WHIS)行为的处理方式相当二分法(即接近或回避),未能捕捉到患者在整个疾病轨迹中参与WHIS时所经历的动态性质和不断演变的动机。这些见解可用于支持关于WHIS的有效的医患沟通,并可导致设计出更好的基于网络的健康平台。
本研究通过基于情景的出声思考方法,探索了癌症患者在疾病轨迹不同阶段基于网络的信息寻求背后的动机和情感模式,以及WHIS引发的认知和情感反应。
总共招募了15名模拟患者,代表癌症患者、幸存者和非正式护理人员。让他们想象自己处于三个情景中——诊断前阶段(5/15,33%)、治疗阶段(5/15,33%)和幸存者阶段(5/15,33%)——要求患者在搜索基于网络的健康信息时说出自己的想法。共有2名研究人员对这些会话进行独立编码,将代码归类为更广泛的主题,以理解模拟患者在WHIS期间的经历。
WHIS的总体动机包括减少不确定性、寻求安慰和获得掌控感。在疾病轨迹开始时,患者主要表现出认知需求,而在随后的疾病阶段,这更多地转向情感需求。模拟患者的WHIS方式从探索性到专注性或两者结合不等。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引发了多样的情绪,在搜索过程中波动。复杂、对抗性和意外的信息主要引发负面情绪。
本研究为癌症患者WHIS背后的动机以及疾病轨迹不同阶段所经历的情感提供了有价值的见解。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满足患者的特定需求,并引导患者获取可靠的基于网络的健康信息来源。