“be persistent and be your own advocate:” a qualitative analysis of #pelvic pain on instagram

Abstract

To explore patient experiences with pelvic pain on Instagram via qualitative analysis. This was a cross-sectional observational study conducted using “#pelvicpain” on Instagram. Images, captions, and hashtags were collected from each of the posts. Posts were included in final analysis if they contained content regarding personal experiences of pelvic pain. Exclusion criteria included non-English language posts and posts advertising medical services from healthcare professionals. The posts were initially screened to identify common themes with which a code book was created. Following this, all posts were coded by three separate authors with a quarter double-coded by an additional author. Cohen’s kappa statistic was calculated to ensure interrater reliability. Two-hundred Instagram posts were included in our final analysis. Our code book contained seven distinct themes: community building, words of affirmation, intersection with other chronic conditions, advice-seeking, everyday life, and descriptions of symptoms (Table 1). Interrater reliability was strong (kappa > 0.8). The majority of the posts pertained to aspects of everyday life (62%, N=124/200) followed by community building (59%, N=118/200), interactions with the healthcare system (N=83/200, 41.5%), words of self-affirmation (41.5%, N=83/200), description of symptoms (41%, N=82/200), intersection with other chronic conditions (29.5%, N=59/200), and advice-seeking (17%, N=34/200). From these posts, we observed that there is a vibrant community of people with chronic pain conditions using Instagram to communicate with others. Conflicting narratives of feeling misunderstood by healthcare professionals juxtaposed with an empowerment for self and for others in the pelvic pain community were noted. Many users utilized their posts to showcase the way chronic pain symptoms manifest and affect their other day-to-day activities. Social media is an important platform through which healthcare professionals can connect with and better understand patients living with pelvic pain. Through this study, we identified a strong community rooted in advocacy for self and others that provides important narratives to an otherwise invisible and stigmatized condition.