Abstract

Social networking sites have become increasingly important for self-diagnosis and obtaining health information, which are particularly relevant in the context of a lack of care. Their structures can further encourage the politicisation of health topics, as they offer a space for the production of crowdsourced knowledge and the amplification of activist content. Hence, it is important to examine how online discourse shapes the decision-making of specific patient groups. This article uses the conceptual lenses of health activism, connective action, and politicised illness identity to investigate health-related decision-making of people with thyroid disease. Drawing on a participatory netnography within activist spaces and 33 in-depth interviews, the study identifies contemporary decision-making paradigms and discusses the role of connective action and politicisation in this context. A typology based on salient strategic themes of decision-making is proposed. The results provide valuable input for researchers of illness identities, as well as practitioners who need to consider different patient types. They contribute to the study of socio-political dimensions of health and an increasingly important discourse that has so far been under-investigated by health communication research.

Highlights

  • Social networking sites have become increasingly important for self-diagnosis and obtaining health information, which are relevant in the context of a lack of care

  • This study aims to offer a socio-political perspective to the study of online health-seeking behaviour by answering the following research questions: RQ1: How do people with thyroid disease who are active on social media make healthrelated decisions? What strategic themes of decision-making can be derived?

  • This study provided insights into the context of politicisation, pointed to the existence of politicised illness identities for people with thyroid disease who are active on social media, and identified several emerging practices related to crowdsourced knowledge

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Summary

Introduction

Social networking sites have become increasingly important for self-diagnosis and obtaining health information, which are relevant in the context of a lack of care Their structures can further encourage the politicisation of health topics, as they offer a space for the production of crowdsourced knowledge and the amplification of activist content. This article uses the conceptual lenses of health activism, connective action, and politicised illness identity to investigate health-related decision-making of people with thyroid disease. The results provide valuable input for researchers of illness identities, as well as practitioners who need to consider different patient types They contribute to the study of socio-political dimensions of health and an increasingly important discourse that has so far been under-investigated by health communication research. This article uses the conceptual lenses of health activism, connective action, and politicised illness identity for analysing different socio-political dimensions of decision-making. This paper contributes to the study of the online health behaviour of a patient group that has been understudied from a socio-political perspective (Winterich, 2011)

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