Rivas Carol, Anand Kusha, Wu Alison Fang-Wei, Goff Louise, Dobson Ruth, Eccles Jessica, Ball Elizabeth, Kumar Sarabajaya, Camaradou Jenny, Redclift Victoria, Nasim Bilal, Aksoy Ozan
Social Research Institute, University College London, London, United Kingdom.
Department of Nutritional Sciences, King's College London, London, United Kingdom.
JMIR Res Protoc. 2022 Jul 1;11(7):e38361. doi: 10.2196/38361.
The COVID-19 pandemic has inequitably impacted the experiences of people living with ill health/impairments or from minoritized ethnic groups across all areas of life. Given possible parallels in inequities for disabled people and people from minoritized ethnic backgrounds, their existence before the pandemic and increase since, and the discriminations that each group faces, our interest is in understanding the interplay between being disabled AND being from a minoritized ethnic group.
The overarching aim of the Coronavirus Chronic Conditions and Disabilities Awareness (CICADA) project, building on this understanding, is to improve pandemic and longer-term support networks, and access to and experiences of care, services, and resources for these underserved groups, both during the pandemic and longer term, thereby reducing inequities and enhancing social, health, and well-being outcomes.
This mixed methods study involves three "sweeps" of a new UK survey; secondary analyses of existing cohort and panel surveys; a rapid scoping review; a more granular review; and qualitative insights from over 200 semistructured interviews, including social network/map/photo elicitation methods and two subsequent sets of remote participatory research workshops. Separate stakeholder cocreation meetings, running throughout the study, will develop analyses and outputs. Our longitudinal study design enables the exploration of significant relationships between variables in the survey data collected and to the assessment of changes in variables over time, including consideration of varying pandemic contexts. The qualitative data will provide more granular detail. We will take a strengths and assets-based approach, underpinned by the social model of disability and by intersectional considerations to challenge discrimination. Our exploration of the social determinants of health and well-being is framed by the social ecological model.
The CICADA project was funded by the Health and Social Care Delivery Research (HSDR) Programme of the United Kingdom (UK) National Institute for Health and Care Research (NIHR) in March 2021 and began in May 2021. Further work within the project (84 interviews) was commissioned in March 2022, a substudy focusing on mental health, specifically in Northeast England, Greater Manchester, and the Northwest Coast of the United Kingdom. Data collection began in August 2021, with the last participants due to be recruited in September 2022. As of January 2022, 5792 survey respondents and 227 interviewees had provided data. From April 2022, the time of article submission, we will recruit participants for the substudy and wave 2 of the surveys and qualitative work. We expect results to be published by winter 2022.
In studying the experiences of disabled people with impairments and those living with chronic conditions who come from certain minoritized ethnic groups, we are aiming for transformative research to improve their health and well-being.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38361.
新冠疫情对健康状况不佳/有残疾的人群或少数族裔群体在生活各方面的经历产生了不公平影响。鉴于残疾人群体和少数族裔背景人群在不公平现象方面可能存在相似之处,这些现象在疫情之前就已存在且自疫情以来有所增加,以及每个群体所面临的歧视,我们感兴趣的是了解残疾与少数族裔身份之间的相互作用。
基于这一认识,冠状病毒慢性病与残疾认知(CICADA)项目的总体目标是改善疫情期间及长期的支持网络,以及这些服务不足群体获得护理、服务和资源的机会及体验,从而减少不公平现象,提升社会、健康和福祉成果。
这项混合方法研究包括对一项新的英国调查进行三次“全面调查”;对现有队列研究和面板调查进行二次分析;一次快速范围审查;一次更细致入微的审查;以及来自200多次半结构化访谈的定性见解,包括社交网络/地图/照片引出法以及随后的两组远程参与式研究研讨会。在整个研究过程中举行的单独利益相关者共同创造会议将开展分析并产出成果。我们的纵向研究设计能够探索所收集调查数据中变量之间的重要关系,并评估变量随时间的变化,包括考虑不同的疫情背景。定性数据将提供更细致的细节。我们将采用基于优势和资产的方法,以残疾社会模型和交叉性考量为支撑,以挑战歧视。我们对健康和福祉的社会决定因素的探索以社会生态模型为框架。
CICADA项目于2021年3月由英国国家卫生与保健研究机构(NIHR)的卫生与社会保健交付研究(HSDR)项目资助,并于2021年5月启动。2022年3月委托开展了该项目内的进一步工作(84次访谈),这是一项聚焦心理健康的子研究,具体涉及英格兰东北部、大曼彻斯特和英国西北海岸。数据收集于2021年8月开始,最后一批参与者预计于2022年9月招募。截至2022年1月,已有5792名调查受访者和227名受访者提供了数据。从2022年4月文章提交之时起,我们将为子研究以及调查和定性工作的第二轮招募参与者。我们预计结果将于2022年冬季公布。
在研究有残疾的残疾人群体以及来自某些少数族裔群体的慢性病患者的经历时,我们旨在进行变革性研究以改善他们的健康和福祉。
国际注册报告识别码(IRRID):DERR1-10.2196/38361。