J E Siegel-Ramsay, S J Sharp, C J Ulack, K S Chiang, T Lanza di Scalea, S O'Hara, K Carberry, S M Strakowski, J Suarez, E Teisberg, S Wallace, J R C Almeida
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引用次数: 0
摘要
背景:当评估双相情感障碍干预的价值时，研究人员和临床医生通常关注量化核心诊断症状(如躁狂)改善的指标。提供者经常忽视或误解治疗对生活质量和功能的影响。我们希望从患者的角度更好地描述美国双相情感障碍的共同经历和障碍。方法:我们招募了24名诊断为双相情感障碍的个体和6名支持患者的护理人员。参与者参与了德克萨斯州中部双相情感障碍的治疗或支持服务。作为这项定性研究的一部分，参与者在个性化的开放式访谈中讨论了他们与双相情感障碍患者生活相关的日常成功和障碍。音频文件被转录，Nvivo软件处理了一个初步的主题分析。然后，我们将主题分类为双相情感障碍相关障碍，这些障碍限制了患者的能力(即功能)，舒适(即减轻痛苦)和平静(即生活中断)(Liu等人，febclino Orthop 475:315- 317,2017;Teisberg et al.， MayAcad Med 95:682-685, 2020)。然后，我们讨论主题，并提出切实可行的策略，可能提高护理的价值，为病人和他们的家庭。结果:与能力有关的问题包括维持身份的斗争，有意义的工作的中断，关系的丧失以及双相情感障碍的不可预测性。与安慰相关的主题包括个人对诊断的看法、社会耻辱和药物问题。平静的主题包括管理轻蔑的医生，寻找合适的心理治疗师以及应对经济负担。结论:来自双相情感障碍患者的定性数据有助于确定护理差距或治疗的实际限制。当我们听取这些人的意见时，很明显，治疗还必须解决这种疾病未得到满足的心理社会影响，以改善患者的护理、能力和平静。
Experiences that matter in bipolar disorder: a qualitative study using the capability, comfort and calm framework.
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.
期刊介绍：
The International Journal of Bipolar Disorders is a peer-reviewed, open access online journal published under the SpringerOpen brand. It publishes contributions from the broad range of clinical, psychological and biological research in bipolar disorders. It is the official journal of the ECNP-ENBREC (European Network of Bipolar Research Expert Centres ) Bipolar Disorders Network, the International Group for the study of Lithium Treated Patients (IGSLi) and the Deutsche Gesellschaft für Bipolare Störungen (DGBS) and invites clinicians and researchers from around the globe to submit original research papers, short research communications, reviews, guidelines, case reports and letters to the editor that help to enhance understanding of bipolar disorders.
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