Making the invisible, visible: co-creating novel approaches to endometriosis pain communication

子宫内膜异位症是一种衰弱的妇科疾病，在子宫外发现类似子宫内膜的组织。在英国，从青春期到更年期，十分之一的女性受到影响，相当于曼彻斯特市约有1.7万人，大曼彻斯特约有7万人。症状包括痛经、慢性盆腔疼痛、肠道和膀胱问题以及怀孕困难。平均诊断需要8年，在此期间经常有多次误诊。与疼痛相关的两个关键问题已被确定为导致延误/误诊：(1)在早期咨询中有效描述疼痛症状的沟通感知缺陷；(2)对疼痛正常化的感知和医疗保健专业人员的解雇。我们之前的研究发现，患有子宫内膜异位症的人倾向于用生动的形象和隐喻来表达他们的痛苦，比如“被一千个小人刺伤”和“像铁丝网缠在我的子宫上”的感觉，这对理解这种经历很有用。然而，我们的研究也发现，患有子宫内膜异位症的人并不总是感到自信，也没有足够的身体资源来支持他们对自己的痛苦进行有效的对话。该项目将健康心理学、语言学、艺术和设计结合起来，让患有子宫内膜异位症的公众共同创造新的方法来交流疼痛，并整理成一个疼痛交流工具包。该工具包可用于克服有效沟通疼痛的已确定障碍，并支持有助于加强沟通和了解子宫内膜异位症的对话，同时减少诊断延迟。该项目将涉及曼彻斯特城市大学心理学系和艺术学院、社区康复艺术（ARC）、子宫内膜异位症英国、子宫内膜异位症语言、海伦·马瑟（有子宫内膜异位症生活经验的艺术家和教育家）以及曼彻斯特和索尔福德疼痛中心的合作。患有子宫内膜异位症的公众人士将参加在Arc中心举办的研讨会，在那里他们将共同制作代表他们子宫内膜异位症疼痛的视觉文物，这些文物可以整理成一个疼痛交流工具包，该工具包还整合了健康心理学理论和行为科学，以鼓励有效的沟通行为。然后，工具包草案将与最初的研讨会参与者以及来自曼彻斯特和索尔福德疼痛中心的医疗保健专业人员在Arc中心的进一步研讨会上共享，以支持对资源如何在医患场景中支持双向沟通的更广泛理解的发展。这将产生一个共同创建的传播计划，以确保工具包能够到达子宫内膜异位症患者认为需要使用它的群体，并且能够改变他们的经历。整理后的反馈将集成到疼痛沟通工具包的最终版本中。在项目结束时，最初的研讨会参与者，以及他们的朋友和家人，将被邀请参加一个启动活动，在那里最终的疼痛沟通工具包将被分享。这个启动活动也标志着在Arc中心为期六周的实物展览的开始，任何公众人士都可以参观以了解更多关于子宫内膜异位症的知识。一个专门的网页将记录项目的生命，一个短片将记录开发工具包的过程。然后，该工具包将进行进一步的评估工作，并将与任何对子宫内膜异位症疼痛交流感兴趣的人分享。

Endometriosis is a debilitating gynaecological condition in which tissue similar to the uterine lining is found outside the uterus. It affects one in ten women from puberty to menopause in the UK equating to around 17,000 people in Manchester city, and around 70,000 in Greater Manchester. Symptoms include painful periods, chronic pelvic pain, bowel and bladder problems, and difficulty getting pregnant. The average diagnosis takes 8 years and there are often multiple misdiagnoses during this time. Two key issues relating to pain have been identified as contributing to delayed/misdiagnosis: (1) perceived deficiencies in communication to effectively describe pain symptoms in early consultations and (2) perceptions of pain normalisation and dismissal from healthcare professionals. Our previous work has identified that people with endometriosis tend to use vivid imagery and metaphor to communication their pain, such as feelings of 'being stabbed by a thousand tiny men' and 'like barbed wire wrapped around my womb', which can be useful in making sense of the experience. However, our work has also identified that people with endometriosis do not always feel confident or have the physical resources to support them in having effective conversations about their pain. This project brings together health psychology, linguistics, and art and design to engage members of the public living with endometriosis in the co-creation of novel approaches to communicating pain, collated into a pain communication toolkit. This toolkit can be used to overcome the identified barriers to effective pain communication and to support conversations that can contribute to enhanced communication and understanding of endometriosis, along with reduced diagnosis delay.This project will involve collaborations between Manchester Metropolitan University's Department of Psychology and School of Art, Arts for Recovery in the Community (ARC), Endometriosis UK, The Language of Endometriosis, Helen Mather (artist and educator with lived experience of endometriosis), and Manchester & Salford Pain Centre. Members of the public with endometriosis will participate in workshops hosted at the Arc Centre where they will co-create visual artefacts representative of their endometriosis pain which can be collated into a pain communication toolkit that also integrates health psychology theory and behavioural science to encourage effective communication behaviours. The draft toolkit will then be shared with the original workshop participants along with healthcare professionals from Manchester & Salford Pain Centre in further workshops at the Arc Centre to support the development of a broader understanding of how the resource can support two-way communication in a doctor-patient scenario. This will result in a co-created dissemination plan to ensure the toolkit will reach the groups that those with endometriosis feel need to use it and who can make a difference to their experiences. Feedback collated will be integrated into a final version of the pain communication toolkit. At the conclusion of the project, original workshop participants, along with their friends and family members, will be invited to a launch event, where the final pain communication toolkit will be shared. This launch event will also mark the start of a 6-week exhibition of the physical artefacts at the Arc Centre, which any member of the public may visit to learn more about endometriosis. A dedicated webpage will document the life of the project, and a short film will document the process of developing the toolkit. The toolkit will then undergo further evaluation work and will be shared with anyone with an interest in endometriosis pain communication.