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与英国中风幸存者共同创作数字故事,旨在从与医疗专业人员互动的个人经历中总结集体经验教训。

Co-creating Digital Stories With UK-Based Stroke Survivors With the Aim of Synthesizing Collective Lessons From Individual Experiences of Interacting With Healthcare Professionals.

作者信息

Hall Joseph, Kroll Thilo, van Wijck Frederike, Bassil-Morozow Helena

机构信息

Department of Media and Journalism, Glasgow School for Business and Society, Glasgow Caledonian University, Glasgow, United Kingdom.

UCD Centre for Education, Research and Innovation in Health Systems (UCD IRIS), School of Nursing, Midwifery and Health Systems, University College Dublin (UCD), Dublin, Ireland.

出版信息

Front Rehabil Sci. 2022 May 30;3:877442. doi: 10.3389/fresc.2022.877442. eCollection 2022.

Abstract

BACKGROUND

Stroke survivor narratives can provide valuable insight into experiences of healthcare and beyond. There is need to further understand collective lessons from stroke survivor narratives, yet prior studies utilizing digital storytelling tend to not synthesize lessons from individual experiences. This study aims to develop a novel method to co-create digital stories with stroke survivors that will aim to synthesize and portray important collective lessons from individual stroke survivors' experiences of interacting with healthcare professionals.

METHODS

This study follows-up a qualitative study conducted with 30 stroke survivors exploring factors that help or hinder survivors to positively reconfigure their identity post-stroke. Five co-creation workshops were conducted with a subset of UK-based stroke survivors from this previous study. Participants were invited to join through: online workshops, an online bulletin board, and as an advisor. A four-stage workshop framework was developed through the integration of UK Design Council's Double Diamond method, digital storytelling strategies and the Behavior Change Wheel (BCW) framework for developing behavioral change interventions.

FINDINGS

Six online workshop participants (three male, three female; aged 33-63; time since stroke 2-16 years) co-created digital stories that share six collective lessons aimed at increasing empathy and encouraging behavior change in healthcare professionals (HCPs) working with stroke survivors. Online bulletin board participants ( = 1) and advisors ( = 5) supported the co-creation process. Collective lessons identified were: (1) Stroke has a variety of symptoms that must all be considered; (2) Stroke can affect anyone of any age and not just the elderly; (3) Assumptions should not be made about a survivor's lifestyle or habits; (4) It is important to acknowledge the person behind the stroke and ensure that they are communicated with and listened to; (5) Stroke survivors can often feel unprepared for the reality of life after stroke; (6) Adapting to life after stroke is a long-term process requiring long-term support.

CONCLUSION

Stroke survivor stories highlighted preconceptions, attitudes and behaviors embedded within healthcare that negatively impacted their experiences and recovery. The novel methodology employed in this study enabled these stories to be synthesized into collective lessons to bring about improvements in these behaviors in future.

摘要

背景

中风幸存者的叙述能够为了解医疗保健及其他方面的经历提供宝贵的见解。有必要进一步理解从中风幸存者叙述中获得的共同经验教训,然而以往利用数字故事讲述的研究往往没有综合个体经历中的经验教训。本研究旨在开发一种与中风幸存者共同创作数字故事的新方法,该方法旨在综合并描绘从中风幸存者与医疗保健专业人员互动的个体经历中获得的重要共同经验教训。

方法

本研究对一项针对30名中风幸存者进行的定性研究进行了跟进,该定性研究探讨了有助于或阻碍幸存者在中风后积极重新塑造其身份的因素。与来自先前这项研究的一部分英国中风幸存者举办了五次共同创作工作坊。通过在线工作坊、在线公告板以及作为顾问邀请参与者加入。通过整合英国设计委员会的双钻石方法、数字故事讲述策略以及用于制定行为改变干预措施的行为改变轮(BCW)框架,开发了一个四阶段工作坊框架。

结果

六名在线工作坊参与者(三名男性,三名女性;年龄在33 - 63岁之间;中风后时间为2 - 16年)共同创作了数字故事,这些故事分享了六个共同经验教训,旨在增强与中风幸存者打交道的医疗保健专业人员(HCPs)的同理心并鼓励其行为改变。在线公告板参与者( = 1)和顾问( = 5)支持了共同创作过程。确定的共同经验教训为:(1)中风有多种症状,必须全部予以考虑;(2)中风可能影响任何年龄段的任何人,而不仅仅是老年人;(3)不应就幸存者的生活方式或习惯做出假设;(4)认识到中风患者背后的人并确保与他们沟通并倾听他们的意见很重要;(5)中风幸存者通常对中风后的现实生活毫无准备;(6)适应中风后的生活是一个需要长期支持的长期过程。

结论

中风幸存者的故事突出了医疗保健中存在的先入之见、态度和行为,这些对他们的经历和康复产生了负面影响。本研究采用的新方法使这些故事能够被综合成共同经验教训,以便在未来改善这些行为。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/67ec/9397888/eb4071e7c09f/fresc-03-877442-g0001.jpg

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