Information need themes and their dynamics among people living with HIV/AIDS: an illness journey perspective
DOI:
https://doi.org/10.47989/ir31356029Keywords:
illness journey, information needs, topic identification, dynamic changes, HIV/AIDSAbstract
Introduction. It is crucial to identify the thematic information needs expressed by people living with HIV/AIDS across media platforms, and to analyse their dynamic evolution through different disease stages to facilitate targeted informational provision.
Method. Information need statements from people living with HIV/AIDS were collected (2022–2024) from Little Red Book, Baidu Knows, Haodf.com, and the Zhi Ai Jiayuan forum.
Analysis. BERTopic and dynamic topic modelling were used to identify themes, compare platform differences, and trace longitudinal changes over time.
Results. Information need themes differed significantly across platforms. On Little Red Book, individuals tended to emphasise information needs related to emotional support and social relationship adjustment; on Baidu Knows, they focused on disease management and maintaining life balance; on Haodf.com, they prioritised professional medical advice, and on the Zhi Ai Jiayuan forum, they sought comprehensive HIV-related information together with social support. The study also found dynamic changes in thematic information needs. During the early stage of HIV infection (stage I), individuals sought emotional support and foundational disease information. During the middle stage (stage II), their information needs diversified to include treatment strategies and family support. During the Advancing to AIDS (stage III), information needs became more specialised, emphasising treatment outcomes and complication management.
Conclusion. Both platform context and disease stage shape the expression of individuals’ information needs. The findings underscore the value of platform- and stage-tailored information services that evolve from psychosocial reassurance to complex clinical guidance.
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