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.

该拟议的公共参与计划使用创造性方法与具有能量限制的慢性病（ELCI）的人与边缘化性别的人共同生产了健康和社会护理的投机性情况。 Elcis包括能量障碍是关键症状的条件，例如神经系统，肌肉骨骼，自身免疫性疾病，ME/CFS，纤维肌痛和长肌。 2018年的估计表明，英国有3名残疾人妇人中有1个经历了这种症状。与远古时期的210万人相处，共同的19日大流行大大增加了这一点。这项提出的公众参与计划是根据一个研究项目建立的，该计划分析了约195,000个定性调查数据，这些调查数据由慢性疾病包容收集，记录了健康和社会护理的经验，以及对未来服务改善的建议，约有900名与ELCI边缘化性别的人。在这些调查受访者中，有75％的人表示，他们经常或经常在与医疗保健专业人员（HCP）的相遇中听过。 ELCI的人是残疾人的大部分地区，但他们的声音和生活经历经常被忽略。必须考虑ELCI的人们在未来健康和社会护理的设计中的需求。这项公共参与工作的计划应对这一势在必行。许多ELCI在女性中更为普遍，基于性别的歧视会加剧难以置信的怀疑，并驳斥许多具有ELCI经验的人。除顺式女主人外，医疗保健中的性别偏见还会更广泛地影响着边缘化的性别，包括变性人，非二进制，性别酷儿和双性恋者。此外，LGBTQIA+人们在获得医疗保健时面临各种障碍。种族主义歧视的历史也导致不平等，制度化的伊斯兰恐惧症意味着穆斯林人民更有可能被医疗专业人员驳回。因此，来自这些具有ELCI的人的人可能会以多种方式被边缘化。拟议的公众参与计划是从先前的研究项目中建立的，使用调查分析作为开端的起点，可以在其中开展一系列由残疾人艺术家提供的创意研讨会，以共同创造ELCI患者的健康和社会护理，以协助他们提供更好的健康和社会保健。参与研讨会的人将被要求通过两种方式来想象未来的健康和社会护理：（1）未来将被诊断出患有ELCI的人的未来改善； （2）希望随着ELCI年龄的增长，希望自己能够为自己的健康和社会关怀。参与的艺术家将利用一系列创造性的方法来促进这些投机情景的想象，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，同步研讨会外，还会有异步选择，使人们可以按照自己的节奏和自己的时间来回应创意提示。除了向ELCI边缘化性别开放的讲习班外，还将为ELCI的人提供专门的团体，他们确定为（1）LGBTQIA+和（2）穆斯林妇女。进一步的讲习班将与医疗保健专业人员举行。创意输出将包括：从Zine制作研讨会中制作的作品中整理的杂志；基于创意写作研讨会的作品的播客形式的音频叙事；一个网站展示了车间的照片，写作和图纸；以及一本漫画书，说明了未来健康和社会护理的可能性。针对管理健康和社会护理的决策者的政策摘要，以及Pulse Magazine（针对GPS）的文章，以及一个教学工具包，以允许在当前和未来的医疗保健专业人员的教育中使用创意输出。这些将通过网络研讨会启动。