Background When assessing the value of an intervention in bipolar disorder, researchers and clinicians often focus on metrics that quantify improvements to core diagnostic symptoms (e.g., mania). Providers often overlook or misunderstand the impact of treatment on life quality and function. We wanted to better characterize the shared experiences and obstacles of bipolar disorder within the United States from the patient’s perspective. Methods We recruited 24 individuals diagnosed with bipolar disorder and six caretakers supporting someone with the condition. Participants were involved in treatment or support services for bipolar disorder in central Texas. As part of this qualitative study, participants discussed their everyday successes and obstacles related to living with bipolar disorder during personalized, open-ended interviews. Audio files were transcribed, and Nvivo software processed an initial thematic analysis. We then categorized themes into bipolar disorder-related obstacles that limit the patient’s capability (i.e., function), comfort (i.e., relief from suffering) and calm (i.e., life disruption) (Liu et al., FebClin Orthop 475:315–317, 2017; Teisberg et al., MayAcad Med 95:682–685, 2020). We then discuss themes and suggest practical strategies that might improve the value of care for patients and their families. Results Issues regarding capability included the struggle to maintain identity, disruptions to meaningful employment, relationship loss and the unpredictable nature of bipolar disorder. Comfort related themes included the personal perception of diagnosis, social stigma and medication issues. Calm themes included managing dismissive doctors, finding the right psychotherapist and navigating financial burdens. Conclusions Qualitative data from patients with bipolar disorder helps identify gaps in care or practical limitations to treatment. When we listen to these individuals, it is clear that treatments must also address the unmet psychosocial impacts of the condition to improve patient care, capability and calm.
Background: Bipolar disorder impacts every domain of living, but treatment is often focused only on core diagnostic symptoms. Care and quality of life can be improved by understanding the experience of people with the condition. Direct interviews with affected individuals offers a unique window into the lived experience of bipolar disorder.Methods: Thirty individuals participated in Experience Group sessions. Researchers conducted individual interviews (n=12) and group sessions (n=18). Audio files were transcribed and NVivo software processed initial thematic analysis. Data was analyzed using the Capability, Comfort, and Calm (CCC) framework of outcomes that matter most to people developed by Teisberg and Wallace (Liu et al. 2017; Teisberg et al. 2020).Results: Themes identified in the CCC framework included the struggle to maintain identity, employment disruptions, relationship loss, unpredictable nature of bipolar disorder, personal perception of diagnosis, social stigma, identifying appropriate medication medication, managing dismissive doctors, finding the right psychotherapist and navigating financial burden. Limitations: Limitations of our study include a small sample size and length of interview time. Researchers also had limited information about participants’ diagnoses and comorbidities. Conclusions: Qualitative data about bipolar disorder helps identify aspects of care and quality of life that are overlooked when focusing only on core diagnostic symptoms. Improved outcomes could be achieved by implementing care based on the lived experiences of people with bipolar disorder.
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