Department of Psychology, Institute of Psychiatry, King's College London, Psychology & Neuroscience, London, UK.
South London & Maudsley NHS Foundation Trust, London, UK.
BMC Psychiatry. 2024 Nov 15;24(1):807. doi: 10.1186/s12888-024-06268-z.
This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers. During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo.
本文描述了一项在一项针对痛苦声音的谈话疗法(AVATAR2)临床试验中进行的以患者和公众参与(PPI)为主导的创意工作坊空间。PPI 为临床研究增添了重要价值,并确保工作对患者及其支持者有意义。然而,已知的问题包括形式主义,PPI 同事和研究人员之间普遍存在权力失衡,以及 PPI 缺乏塑造研究的机会。PPI 在 AVATAR2 试验的所有阶段都发挥了关键作用,包括设计、招募工作人员和参与者、数据收集、分析和传播。一个积极而富有创意的团队成立了,有 30 多名成员在所有四个地点灵活参与。PPI 小组成员背景多样,有心理健康状况和康复方面的生活经验,包括照顾者。在这项工作中,PPI 同事们表示,他们希望有一个创意空间,可以帮助宣传研究,但不仅仅局限于专注于试验交付成果。建立了一个定期的创意工作坊,以支持 PPI 同事的创意工作,包括诗歌、博客、艺术和播客等材料。PPI 同事和试验工作人员共同撰写了一篇反思性文章,分享他们在创意工作坊的经验,分为四个主题。我们发现,这些工作坊是在试验工作人员和 PPI 同事之间建立关系的有力工具,同时也促进了个人发展。我们反思了工作坊如何增强与会者的信心,并支持公开演讲等要求苛刻的试验活动。最后,我们讨论了工作坊对更广泛的试验文化的影响,通过坚持团队的价值观和挑战现状。