相信女性:MAPP 研究网络中来自间质性膀胱炎/膀胱疼痛综合征女性的提供者怀疑和疼痛忽视的定性探索。

Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network.

机构信息

Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA.

Division of Female Pelvic Medicine and Reconstructive Surgery, Department of Obstetrics and Gynecology, Washington University School of Medicine, St. Louis, MO, USA.

出版信息

Int Urogynecol J. 2024 Jan;35(1):139-148. doi: 10.1007/s00192-023-05677-0. Epub 2023 Nov 22.

Abstract

INTRODUCTION AND HYPOTHESIS

Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters.

METHODS

We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters.

RESULTS

Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine.

CONCLUSIONS

The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.

摘要

简介和假设

尽管在间质性膀胱炎/膀胱疼痛综合征(IC/BPS)文献中随处可见提及良好医患关系的重要性,但缺乏对患者对临床接触的看法的定性分析,尤其是在受 IC/BPS 影响最大的女性中。因此,我们采用以患者为中心的体验方法来了解女性患者对临床接触的看法。

方法

我们重新分析了先前从一项关于患者发作体验的定性研究中收集的数据,该研究包括 8 组女性 IC/BPS 患者的焦点小组(n=57,平均每组 7 人)。定性分析应用扎根理论对所有医患互动进行索引,然后对这些互动进行主题编码,以阐明临床接触的常见体验。

结果

IC/BPS 女性患者分享了提供者怀疑和疼痛否认的共同经历。与参与者的讨论表明,这些负面的接触在多大程度上塑造了患者的医疗保健寻求行为、前景和心理社会幸福感。提供者怀疑和否认以多种形式出现,包括默许暗示、明确陈述、沉默、过度简化和不愿倾听和讨论替代治疗。因此,女性患者采用了多种策略,包括:轮流看专科医生;“测试”医生;自我倡导;自我管理;避免慢性疼痛的耻辱感;哭泣;以及选择替代医学而不是生物医学。

结论

IC/BPS 女性中提供者怀疑和疼痛否认的普遍存在表明,需要改善医患沟通,这是由女性慢性疼痛患者在诊断过程中所经历的挣扎、焦虑和性别不平等所决定的。结果表明,可能需要进一步调查临床接触的权力动态。

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