Health-Related Decision-Making of People with Thyroid Disease

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.

Online Health Communities in Controversy over ME/CFS and Long Covid

“…In structure, these resemble the kinds of OHCs studied by Chen et al (2018): Organisational websites that incorporate discussion spaces for a community beyond the organisation itself. In content, they differ: Discussion spaces maintained by ME/CFS organisations are not infused with professional expertise but with 'crowd-based' knowledge (as in the OHCs studied by Schossböck, 2021). Whether embodying logics of connective or collective action or elements of both, OHCs concerned with ME/CFS share a striking commonality in their adherence to bodies of knowledge produced by patients themselves, much of which contradicts mainstream medical views of their illness.…”

“…A key element of the logic of connective action, as theorised by Bennett and Segerberg, is the personalised action frames that compete with collective actions frames once considered crucial for the success of protest movements. Schossböck (2021) explored how the logic of connective action fostered by social media allows people with thyroid disease (and by implication, any illness) to pursue alternatives to 'expert' knowledge of the disease and more personalised approaches to treatment. Groups like these, for ME/CFS and for other illnesses, are especially important for the study of health controversies, since they create and advance positions reflecting dissent from mainstream medical views (Agergaard et al, 2020;Nguyen & Catalan-Matamoros, 2020;Wilson & Keelan, 2013), dissatisfaction with settled healthcare practice (Lian & Grue, 2017;Lian & Nettleson, 2015;Schossböck, 2021), or conflicts within patient groups (Parsloe & Holton, 2017).…”

“…Schossböck (2021) explored how the logic of connective action fostered by social media allows people with thyroid disease (and by implication, any illness) to pursue alternatives to 'expert' knowledge of the disease and more personalised approaches to treatment. Groups like these, for ME/CFS and for other illnesses, are especially important for the study of health controversies, since they create and advance positions reflecting dissent from mainstream medical views (Agergaard et al, 2020;Nguyen & Catalan-Matamoros, 2020;Wilson & Keelan, 2013), dissatisfaction with settled healthcare practice (Lian & Grue, 2017;Lian & Nettleson, 2015;Schossböck, 2021), or conflicts within patient groups (Parsloe & Holton, 2017). Connective action does not generally aim for consensus on goals and means but often involves small subversive actions taken by many individuals without central coordination.…”