身体是障碍和 "他人"。慢性炎症性肠病患者如何看待自己的身体、自我和美好生活。

IF 3 1区 哲学 Q1 ETHICS BMC Medical Ethics Pub Date : 2024-07-24 DOI:10.1186/s12910-024-01076-2
Anke Erdmann, Christoph Rehmann-Sutter, Florian Schrinner, Claudia Bozzaro
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引用次数: 0

摘要

背景:慢性炎症性肠病(IBD)的治疗旨在改善患者的生活质量,治疗成功的程度通过患者报告结果(PROs)来衡量。然而,用于收集 PROs 的调查问卷通常包含一些并非专门针对 IBD 的量表。改进这些量表需要更深入地了解患者的生活经历。通过这项研究,我们首次深入了解了 IBD 患者如何体验自己的身体和自我,以及他们如何在精准医疗(PM)的背景下调整自己的生活计划,并提出了相关假设。指导性问题是了解他们在面对疾病的同时,需要什么来实现美好生活:我们借鉴 Philippa Foot 的 "自然化 "方法,提出了 "美好生活 "的概念,并区分了与美好生活相关的六个不同维度。在这一概念的指导下,我们对精准医学临床研究环境中的 IBD 患者进行了 10 次定性访谈。访谈的目的是为了回答我们的研究问题:身体体验如何影响 IBD 患者的美好生活?我们采用解释现象学分析法(IPA)对访谈进行了分析:结果:出现了五个群体体验主题:(i) 生活选择和计划,(ii) 其他人的反应,(iii) 应对他人反应的策略,(iv) 对身体和自我的感知,以及 (v) 尽管遭受痛苦,但仍认为生活是美好的。我们在此报告其中的三个方面(i、iv 和 v),它们主要与评估 PM 护理的结果相关。在 "生活选择和计划(i)"方面,我们的研究主要证实了以往的研究,而在 "对身体和自我的感知(iv)"方面,我们发现一些患者改变了他们与身体和自身的关系。他们将身体或疾病视为 "他者",自我似乎与自己的身体相分离。虽然这可能是患者用来将自身病情及其 "恶心 "症状的责任归咎于 "他人 "的一种回避策略,但将其纳入患者报告结果(PRO)评估非常重要:我们的结论是,基于 Foot 美好生活概念的多维方法非常适合作为调查 IBD 患者生活质量的基础。基于这一概念的访谈结果超越了对健康相关生活质量(HRQoL)的理解。此外,我们还就患者实现美好生活的机会提出了一些思考,并就进一步开发患者报告结果量表提出了建议。
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The body as an obstacle and the "other". How patients with chronic inflammatory bowel diseases view their body, self and the good life.

Background: Treatment of chronic inflammatory bowel disease (IBD) aims to improve patients' quality of life and the extent of treatment success is measured via patient reported outcomes (PROs). However, questionnaires used to collect PROs often include scales that are not specific to IBDs. Improving these scales requires a deeper understanding of patients' lived experience. With this study we give first insights and develop hypotheses on how patients with IBDs experience their body and self and how they adjust their life plans in the context of precision medicine (PM). The guiding question is to understand what they need to achieve a good life, while facing their disease.

Methods: We developed a conception of the "good life" that draws on Philippa Foot's "naturalized" approach and distinguishes six different dimensions that are relevant for a good life. This conception guided us as we conducted 10 qualitative interviews with patients suffering from IBD who were in precision medicine clinical research settings. The interviews aimed to gain insights for answering our research question: How do body experiences affect the good life of patients with IBD? We analyzed the interviews with interpretative phenomenological analysis (IPA).

Results: Five group experiential themes emerged: (i) Life options and plans, (ii) other people's responses, (iii) strategies to deal with others' responses, (iv) perception of the body and self, and (v) perception of life as good despite suffering. We report here on three of them (i, iv and v), which are primarily relevant for evaluating the outcomes of PM care. Whereas with "life options and plans (i)," our study predominantly confirmed previous research, with "perception of the body and self (iv)," we found that some of the patients changed their relationship to their body and themselves. They perceived the body or the disease as the "other" and their self appears divorced from their own body. Although this might be an avoidance strategy patients use to assign responsibility for their condition and its "disgusting" symptoms to the "other," it is important to include it in patient reported outcome (PRO) assessments.

Conclusions: We conclude with the insight that the multi-dimensional approach based on Foot's concept of a good life is well-suited as a basis for investigating the quality of life of people with IBD. Interviews based on this concept produced results that go beyond the understanding of health-related quality of life (HRQoL). Additionally, we offer some considerations about patients' opportunities for achieving a good life and suggestions for further developing patient reported outcome scales.

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来源期刊
BMC Medical Ethics
BMC Medical Ethics MEDICAL ETHICS-
CiteScore
5.20
自引率
7.40%
发文量
108
审稿时长
>12 weeks
期刊介绍: BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.
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