讲述乳腺癌患者不为人知的经历:从患者-公众参与讲故事活动中汲取的经验教训。

IF 1.5 Q3 PHARMACOLOGY & PHARMACY
Margaret R Cunningham, Nicholas J W Rattray, Yvonne McFadden, Domenica Berardi, Karim Daramy, Patricia E Kelly, Allison Galbraith, Isobel Lochiel, Lorraine Mills, Yvonne Scott, Susan Chalmers, Alison Lannigan, Zahra Rattray
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引用次数: 0

摘要

目的:乳腺癌仍然是全球妇女的常见病。虽然乳腺癌治疗方面的进步提高了患者的生存率,但乳腺癌诊断和随后的干预措施对患者在这一流行病期间的生活经历有着持久的影响:方法:我们以社区-学术合作的形式介绍了患者参与系列研讨会的合作学习过程。我们使用了叙事医学工具来描述患者确诊后的生活经历,患者和研究人员在每次研讨会上都分享了他们的癌症研究活动,并讨论了多学科医疗团队的作用:主要研究结果:我们采用了迭代的方法来建立群组、发展叙事,并使用多种媒体形式来捕捉故事。20 多名乳腺癌患者在确诊后首次与更多人分享了他们的故事。在此,我们将介绍此次活动的学习过程和注意事项:了解患者的亲身经历可以帮助研究人员和医疗保健专业人员在制定共同医疗保健决策时采用移情方法。此外,了解患者的生活经历对于解决医疗保健中的不平等问题至关重要。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Recounting the untold stories of breast cancer patient experiences: lessons learned from a patient-public involvement and engagement storytelling event.

Objectives: Breast cancer remains a prevalent disease in women worldwide. Though advancements in breast cancer care have improved patient survival, a breast cancer diagnosis, and subsequent interventions have a lasting impact on patients' lived experiences during the pandemic.

Methods: We present the collaborative learning process from this patient engagement workshop series as a community-academic partnership. Narrative medicine tools were used to recount patients' lived experiences following diagnosis, where both patients and researchers shared their cancer research activities in each workshop, and the role of the multidisciplinary healthcare team was discussed.

Key findings: We used an iterative approach to cohort building, narrative development, and the use of multiple media formats to capture stories. Over 20 patients with breast cancer shared their stories for the first time since their diagnosis with a wider audience. Here, we present the learning process and considerations from this event.

Conclusions: Understanding patients' lived experiences can support researchers and healthcare professionals in developing an empathetic approach to shared healthcare decision making. Moreover, understanding the lived experiences of patients is critical to addressing disparities in healthcare.

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来源期刊
CiteScore
2.90
自引率
5.60%
发文量
146
期刊介绍: The International Journal of Pharmacy Practice (IJPP) is a Medline-indexed, peer reviewed, international journal. It is one of the leading journals publishing health services research in the context of pharmacy, pharmaceutical care, medicines and medicines management. Regular sections in the journal include, editorials, literature reviews, original research, personal opinion and short communications. Topics covered include: medicines utilisation, medicine management, medicines distribution, supply and administration, pharmaceutical services, professional and patient/lay perspectives, public health (including, e.g. health promotion, needs assessment, health protection) evidence based practice, pharmacy education. Methods include both evaluative and exploratory work including, randomised controlled trials, surveys, epidemiological approaches, case studies, observational studies, and qualitative methods such as interviews and focus groups. Application of methods drawn from other disciplines e.g. psychology, health economics, morbidity are especially welcome as are developments of new methodologies.
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