Sarah Akhtar Baz, Mirembe Woodrow, Donna Clutterbuck, Chao Fang, Jordan Mullard, Amitava Banerjee, Sarah Barley-McMullen, Jd Carpentieri, Anne-Laure Donskoy, Alice Faux-Nightingale, Sasha Lewis-Jackson, Margaret E. O'Hara, Tanvi Rai, Ondine Sherwood, Nina Smyth, Kirsty Stanley, Victoria Welsh, Ghazala Mir, Nisreen A. Alwan
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Alwan","doi":"10.1111/hex.70047","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Introduction</h3>\n \n <p>Organised by the ‘Qualitative Long Covid Network’, a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. 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引用次数: 0
摘要
导言:2023 年 6 月,"定性长期慢性阻塞性肺病网络 "组织召开了一次研讨会,与会者包括长期慢性阻塞性肺病(LC)定性研究人员、长期慢性阻塞性肺病慈善机构代表和长期慢性阻塞性肺病患者,会上分享并讨论了有关影响长期慢性阻塞性肺病患病率、认知和护理的交叉不平等现象的研究:方法:从研讨会期间的发言、讨论和反思中总结出五个关键主题,并在本研究中予以介绍:讨论了以下五个主题:慢性淋巴细胞白血病的不公平、获得护理的困难、对医疗系统的不信任、对慢性淋巴细胞白血病缺乏了解以及遭受羞辱和歧视的经历。研究还发现了扩大或缩小与慢性淋巴细胞白血病相关的不平等的因素:我们呼吁采取行动,通过强有力的慢性阻塞性肺病研究议程来调查和解决不平等问题,让政策制定者和决策者信服。我们认为,需要对研究和循证政策与实践进行大力投资,以减轻该疾病的最坏影响,并解决经验、治疗和支持方面的不平等问题,社会上一些最脆弱和处境最不利的人更经常、更严重地经历这些不平等问题:本文所涉及的项目都有患者和公众参与(PPI)活动为其研究提供信息。CONVALESCENCE PPI 小组的一名成员在 QLC 网络 "Long Covid 与健康不平等 "研讨会上发表了演讲,Long COVID 儿童组织、Long COVID 支持组织和 Long COVID SOS 慈善组织的成员也发表了演讲。他们都受邀成为本文的共同作者。
Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?
Introduction
Organised by the ‘Qualitative Long Covid Network’, a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed.
Methods
Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study.
Results
The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. Factors that widen or narrow inequalities related to LC were identified.
Conclusion
A call to action is proposed to investigate and address inequalities through a robust LC research agenda that speaks with conviction to policy and decision-makers. We argue that there needs to be a strong investment in research and evidence-based policy and practice to mitigate the worst effects of the condition and address the inequalities in experience, treatment and support, which are experienced more often and more acutely by some of society's most vulnerable and disadvantaged individuals.
Patient and Public (PPI) Contribution
Projects included in this article had PPI ongoing activity to inform their research. A member of the CONVALESCENCE PPI group presented at the QLC Network ‘Long Covid and Health Inequalities’ workshop, as did members of Long COVID Kids, Long COVID Support and Long COVID SOS charities. They were all invited to be co-authors of this article.
期刊介绍:
Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including:
• Person-centred care and quality improvement
• Patients'' participation in decisions about disease prevention and management
• Public perceptions of health services
• Citizen involvement in health care policy making and priority-setting
• Methods for monitoring and evaluating participation
• Empowerment and consumerism
• Patients'' role in safety and quality
• Patient and public role in health services research
• Co-production (researchers working with patients and the public) of research, health care and policy
Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.