Exploring online discussions for those living with cutaneous T cell lymphoma: a qualitative study

Cutaneous T cell lymphoma (CTCL) significantly impacts emotional well-being and quality of life. The role of social media for individuals affected by CTCL has not been thoroughly explored. This study aims to examine the themes and sentiments expressed within a CTCL-specific online support group.

A retrospective qualitative analysis was conducted on posts and comments from a CTCL-specific Facebook group over 1 year (6/14/2022-6/19/2023), collected at 1-week intervals every 28 days. NVivo software was used for inductive coding and thematic analysis, followed by deductive refinement. Content was evaluated for the prevalence of unsupported medical advice, and sentiment analysis was performed using NVivo's Lexalytics Salience Engine.

Of 1984 members of the group, 396 engaged in 192 posts and 1736 comments over the study period. Main themes were "seeking and sharing experiences" (29%) and "navigating uncertainty" (25%), particularly around treatments. The majority (60%) of medical advice shared in the group was unsupported, mainly personal anecdotes and speculations. Negative sentiments were predominant, especially around personal experience and disease progression discussions.

The content and predominant themes suggest that this social media group may function as a medium for sharing treatment experiences and discussing emotional or diagnostic uncertainties among those living with CTCL. The predominance of negative sentiment, despite the supportive nature of the group, suggests it may also serve as a platform for emotional release and venting. The emphasis on treatment discussions highlights potential opportunities for developing tailored educational interventions.