Contesting illness: communicative (dis)enfranchisement in patient–provider conversations about chronic overlapping pain conditions

Abstract

Guided by the theory of communicative (dis)enfranchisement (TCD), this study analyzes 738 narratives describing negative (n = 381) and positive (n = 357) patient–provider interactions recounted by 399 female-identifying patients residing in 22 countries who are living with poorly understood chronic overlapping pain conditions (COPCs) such as fibromyalgia, vulvodynia, and endometriosis. Using thematic co-occurrence analysis (TCA), a novel method that builds on the identification of themes to map and visualize conceptual interrelationships, we identify nine enactments of (dis)enfranchising talk (DT) across three functions (discrediting, silencing, and stereotyping), four domains of consequences of DT (perceptual, emotional, physical, and material), and two patterns of co-occurrence between functions and consequences of DT (discrediting and physical, silencing and emotional). We illustrate how three MAXQDA software features can facilitate multi-coder TCA in large qualitative datasets. We offer theoretical implications and practical implications for communication researchers, patients, and medical providers toward improving difficult conversations concerning chronic pain.

“Being Sick Does Not Define You”: Communicated Narrative Sense-Making of Autoimmune Disease in Emerging Adult Women in the U.S.

“…As a result, this study offers further avenues to explore narrative-based resilience scholarship in the face of disruptive life events (Betts et al, 2022), like chronic illness (Venetis et al, 2020). Finally, this study contributes to a growing body of communication scholarship on autoimmune disease (Castle & Koenig Kellas, 2019; Gunning, 2022; Thompson, Pulido, et al, 2022) and dismissive and disenfranchising experiences for individuals with chronic illness and pain (Gunning & Taladay-Carter, 2023; Hildenbrand et al, 2022; Hintz & Tucker, 2023), notably women (Hintz, 2022; Thompson, Babu, & Makos, 2022, 2023).…”

“…In making sense and meaning of what illness looks like them, participant narratives challenged these ideologies. These findings highlight the need for counter-narratives in resisting hegemonic and ableist ideologies in healthcare contexts (Basinger et al, 2022;Hintz & Tucker, 2023).…”