Imagining Better Futures of Health and Social Care with and for People with Energy Limiting Chronic Illnesses

与患有慢性疾病的人一起畅想健康和社会关怀的美好未来

• 批准号: AH/X012263/1
• 负责人: Bethan Evans
• 金额: $ 5.22万
• 依托单位: University of Liverpool
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=AH%2FX012263%2F1
• 关键词: Imagining; Better; Futures; Health; Social

This proposed public engagement programme uses creative methods to co-produce speculative scenarios of health and social care with people of marginalised genders with Energy Limiting Chronic Illness (ELCI). ELCIs include conditions in which energy impairment is a key symptom, e.g. neurological, musculoskeletal, auto-immune diseases, ME/CFS, fibromyalgia and Long Covid. Estimates in 2018 suggest 1 in 3 disabled people of working age in the UK experience such symptoms. The covid-19 pandemic has significantly increased this with 2.1 million people in the UK living with Long Covid. This proposed programme of public engagement builds from a research project which analysed around 195,000 words of qualitative survey data collected by Chronic Illness Inclusion that documents the experiences of health and social care, and suggestions for future service improvement, by around 900 people of marginalised gender with ELCI. Of those survey respondents, 75% said they often, or very often, were not listened to in encounters with Health Care Professionals (HCPs). People with ELCI are a large and growing section of the disabled population yet their voices and lived experiences are often overlooked. There is an imperative to consider the needs of people with ELCI in the design of future health and social care. This programme of public engagement work responds to that imperative. Many ELCIs are more common in women, and gender-based discrimination in medicine exacerbates the disbelief and dismissal many people with ELCI experience. In addition to cis-women, gender bias in health care affects people of marginalised genders more broadly, including transgender, nonbinary, gender queer and intersex people. Moreover, LGBTQIA+ people face a variety of barriers when accessing healthcare. Histories of racist discrimination in medical care also lead to inequalities, and institutionalised islamophobia means Muslim people are more likely to be dismissed by medical professionals. People from these groups who have ELCI may therefore be marginalised in multiple ways.The proposed programme of public engagement builds from the previous research project, using the survey analysis as a starting point from which to run a series of creative workshops, facilitated by disabled artists, to co-create speculative scenarios that imagine better health and social care for people with ELCI. People involved in the workshops will be asked to imagine future health and social care in two ways: (1) future improvements for people who will be diagnosed with ELCI in the future; and (2) hopes for future health and social care for themselves as they age with ELCI. The artists involved will utilise a range of creative methods to facilitate the imagination of these speculative scenarios, including drawing, creative writing, zine making, photography, audio recordings and comic creation. In addition to online, synchronous workshops, there will be asynchronous options, allowing people to respond to creative prompts at their own pace and in their own time. In addition to workshops open to anyone of marginalised gender with ELCI, there will be dedicated groups for people with ELCI who identify as (1) LGBTQIA+ and (2) Muslim women. Further workshops will be held with health care professionals. Creative outputs will include: zines collated from the work produced in zine making workshops; an audio narrative in podcast form based on pieces from creative writing workshops; a website showcasing photographs, writing and drawings from the workshops; and a comic book illustrating possibilities for future health and social care. A policy brief targeted at decision makers involved in managing health and social care, and an article for Pulse magazine (which targets GPs) will also be produced, along with a pedagogical toolkit to allow the creative outputs to be used in education for current and future health care professionals. These will be launched via a webinar.

这一拟议的公众参与方案采用创造性的方法，与患有能量限制慢性病（ELCI）的边缘化性别的人共同产生健康和社会护理的推测情景。elci包括以能量损害为主要症状的病症，例如神经系统疾病、肌肉骨骼疾病、自身免疫性疾病、ME/CFS、纤维肌痛和长冠肺炎。2018年的估计显示，英国三分之一的工作年龄残疾人都有这种症状。2019冠状病毒病大流行大大增加了这一数字，英国有210万人长期感染新冠病毒。这一拟议的公众参与方案建立在一个研究项目的基础上，该项目分析了约19.5万字的定性调查数据，这些数据由“慢性病包容”收集，记录了约900名患有ELCI的边缘化性别人士的健康和社会护理经验，以及对未来服务改进的建议。在这些调查受访者中，75%的人表示，在与卫生保健专业人员（HCPs）的接触中，他们经常或经常没有得到倾听。ELCI患者是残障人群中数量庞大且不断增长的一部分，但他们的声音和生活经历往往被忽视。在设计未来的卫生和社会保健时，必须考虑ELCI患者的需求。这项公众参与工作方案回应了这一迫切需要。许多ELCI在女性中更为常见，医学上基于性别的歧视加剧了许多有ELCI经历的人的不信任和解雇。除顺式妇女外，保健中的性别偏见更广泛地影响到边缘化性别的人，包括变性人、非二元性人、性别古怪者和双性人。此外，LGBTQIA+人群在获得医疗保健时面临各种障碍。医疗保健中的种族歧视历史也导致了不平等，而制度化的伊斯兰恐惧症意味着穆斯林更有可能被医疗专业人员忽视。因此，这些群体中患有ELCI的人可能会在多个方面被边缘化。拟议的公众参与方案以先前的研究项目为基础，以调查分析为起点，在残疾艺术家的协助下，开展一系列创意讲习班，共同创造设想为ELCI患者提供更好的健康和社会护理的推测情景。参加讲习班的人将被要求从两个方面设想未来的健康和社会护理：(1)未来将被诊断为ELCI的人的未来改善；(2)希望随着ELCI的发展，他们能够得到未来的健康和社会照顾。参与的艺术家将利用一系列创造性的方法来促进这些推测场景的想象，包括绘画，创意写作，杂志制作，摄影，录音和漫画创作。除了在线、同步的研讨会之外，还有异步的选择，允许人们按照自己的节奏和自己的时间来响应创造性的提示。除了对任何被边缘化的ELCI性别开放的研讨会外，还将有专门的ELCI群体（1)LGBTQIA+和(2)穆斯林女性）。将与保健专业人员举行进一步的讲习班。创意产出将包括：从杂志制作车间制作的作品中整理出来的杂志；基于创意写作工作坊作品的播客形式的音频叙述；一个网站，展示工作坊的照片、文字和绘画；还有一本漫画书，说明了未来健康和社会关怀的可能性。还将编写一份针对参与管理卫生和社会保健的决策者的政策简报，并为《脉动》杂志（以全科医生为目标）撰写一篇文章，同时还将编写一个教学工具包，以便将创造性产出用于当前和未来卫生保健专业人员的教育。这些将通过网络研讨会发布。