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以疾病叙事为例,对更好地理解西班牙被诊断患有乳腺癌的女性的生活体验进行主题分析。

Thematic analysis of illness narratives as an example of an approach to better understand the lived experience of women diagnosed with breast cancer in Spain.

机构信息

Escuela Internacional de doctorado. Facultad de Ciencias de la salud, Universidad Rey Juan Carlos, Madrid, Spain.

Facultad de comunicación, Universidad Rey Juan Carlos, Madrid, Spain.

出版信息

BMJ Open. 2022 Oct 3;12(10):e060935. doi: 10.1136/bmjopen-2022-060935.

Abstract

OBJECTIVE

To explore the lived experience of women diagnosed with breast cancer through the analysis of illness narratives, as an example of a narrative-based medicine approach.

SETTING

Spain.

PARTICIPANTS

Nine narratives stemming from non-fiction books, and six from interviews through online platforms. All participants were cis women and their ages ranged between 34 and 60 years. The inclusion criteria were being a woman and having been diagnosed with and treated for breast cancer in Spain.

RESULTS

The main topics that appeared on the analysis were: secondary effects of treatment, breast loss and scars, breast reconstruction, long-term effect of treatment, positive attitude, illness as learning and use of language. Although the results of this research are preliminary, it can be said that societal expectations quickly became a burden for the patients. Moreover, there was no common behavioural pattern among the participants and how they chose to manage their cancer journey. Choosing whether or not to hide their baldness, go through reconstructive surgery or fulfil the 'patient role' were options they wanted to review based on their own priorities, and not because of external impositions. Even though the women agreed with the benefits of having a positive attitude, they also asked for space to feel rage and sadness, not to be compared with others and to be heard with no haste, as well as to be accompanied beyond the treatment, and for their long-term effects of medications to be validated. The importance of the type of comments and language used is emphasised.

CONCLUSION

A narrative-based medicine approach enables us to incorporate the patient experience into the understanding of breast cancer. We encourage clinicians to be aware of the concepts of normality held by women, and to welcome different choices and different ways to experience illness.

摘要

目的

通过分析疾病叙事,探索被诊断患有乳腺癌的女性的生活体验,这是一种叙事医学方法的示例。

地点

西班牙。

参与者

九个叙事源于非小说书籍,六个来自在线平台的采访。所有参与者均为 cis 女性,年龄在 34 岁至 60 岁之间。纳入标准为女性,在西班牙被诊断出患有并接受过乳腺癌治疗。

结果

分析中出现的主要主题是:治疗的次要影响、乳房缺失和疤痕、乳房重建、治疗的长期影响、积极态度、疾病作为学习和语言的使用。尽管这项研究的结果是初步的,但可以说社会期望很快成为患者的负担。此外,参与者之间没有共同的行为模式,以及他们如何选择管理自己的癌症之旅。选择是否隐藏脱发、进行重建手术或履行“患者角色”是他们根据自己的优先事项想要审查的选项,而不是因为外部强制。尽管这些女性同意积极态度的好处,但她们也要求有空间感到愤怒和悲伤,不与他人比较,不急于倾听,以及在治疗之外得到陪伴,并确认药物的长期影响。强调了评论和使用的语言类型的重要性。

结论

叙事医学方法使我们能够将患者体验纳入对乳腺癌的理解。我们鼓励临床医生意识到女性所持有正常概念,并欢迎不同的选择和不同的体验疾病的方式。

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