Shouts from the Void: A Mixed-Method Analysis Surrounding the Online Chronic Illness Community, NEISVoid

ABSTRACT

Chronic illness affects millions worldwide, rendering the life of those affected complex to manage. Extant research points to the need for effective and supportive care for the successful treatment, yet health care encounters for this population are often filled with negative experiences, ranging from discontinuity of care to disenfranchisement from providers. One such group dedicated to sharing struggles is the NEISVoid (No End In Sight) community on Twitter. Through the use of the hashtag, #NEISVoid, they come together to share what experiences living with chronic illness look like, in vulnerable and potentially unfiltered ways. The present study analyzes the discourse surrounding the hashtag #NEISVoid in tweets published from January 1 2020, until September 1 2022 (N = 450,914 tweets) using the mixed-method analysis of topic model network (ANTMN) approach. We identify and discuss four broad discursive themes: community experiences, symptom management, efficacy solutions, and biomedical health. We analyze this discourse through the chronic care model (CCM) and in light of research on hashtag activism. We discuss practical and theoretical implications for health communicators.

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Funding

The author(s) reported there is no funding associated with the work featured in this article.