Characterizing the Impact of Stigma From the Perspective of Bipolar Disorder Patients: Results From a Social Listening Study

Abstract Background Bipolar disorder (BP) is a chronic and recurrent psychiatric disorder characterized by manic/hypomanic and depressive episodes with or without mixed features. Despite high levels of functional disability associated with BP, internal and external stigma can create barriers to successful recovery. This retrospective, observational social listening study was conducted to understand how stigma-related terms correlated with discussion of therapeutic interventions and psychosocial domains associated with functional recovery in unprompted, online conversations by self-identified bipolar disorder patients. Methods A comprehensive search was performed for publicly available, online conversations posted on forums, blogs, message boards, and the social media platforms Facebook and YouTube between 1/1/2019 and 9/30/2021. Digital interactions of anonymous self-identified BP-diagnosed patients were analyzed to identify associations between common themes and sentiments related to BP and stigma. An index value (baseline=100) was calculated based on the expected correlation between the rate that a stigma-related concept was used in BP conversation versus general online conversation. An index value >100 indicated higher correlation than statistically expected; index values <100 indicated lower correlation than expected. Results A total of 257,964 conversations from 30,710 patients with BP were identified for analysis (mean, 8.4 BP-I posts per individual/year). The most prevalent stigma-related terms in patient conversations were guilt (6.9%), frustrated/discouraged (1.8%), shame (1.1%), and exhaustion (1.1%). Stigma-related terms over-indexed in conversations attributed to bipolar patients (e.g., guilt=708, denial=563, embarrassment=480); stigma-related terms were also over-indexed in relapse-related conversations (e.g., stressed=184, shame=141, and frustrated/discouraged=124). Social/familial topics (47.2%) were discussed as often as medical/psychological interventions (48.7%) and medication (42.8%). Medical intervention-related conversations were not highly correlated with stigma, except in areas of insurance/disability. Stigma-related terms were over-indexed in conversations related to social/familial relationships (e.g., isolation/loneliness=134, guilt=132), and jobs/school (e.g., embarrassment=190, stigma=184, overwhelmed=154, shame=142, isolation/loneliness=140). Conclusion These analyses describe the pattern by which stigma appears in patient perceptions of psychosocial and medical/therapeutic domains. Stigma significantly associates with psychosocial domains related to functional recovery, but not with patient perceptions of therapeutic interventions. Thus, stigma may act as a barrier between symptomatic remission and functional recovery. The patient-provider therapeutic alliance represents a trusted channel and an opportunity through which patients should be supported in overcoming stigma-related barriers to functional recovery. Funding AbbVie