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社区参与巴西、埃塞俄比亚和斯里兰卡的皮肤利什曼病研究：全球健康的去殖民化方法。

Community Engagement in Cutaneous Leishmaniasis Research in Brazil, Ethiopia, and Sri Lanka: A Decolonial Approach for Global Health.

机构信息

School of Medicine, Keele University, Newcastle-under-Lyme, United Kingdom.

Department of Community Medicine, Rajarata University of Sri Lanka, Saliyapura, Sri Lanka.

出版信息

Front Public Health. 2022 Feb 15;10:823844. doi: 10.3389/fpubh.2022.823844. eCollection 2022.

DOI:10.3389/fpubh.2022.823844
PMID:35242734
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8885625/
Abstract

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often "neglected" public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil ( = 4), Ethiopia ( = 6), and Sri Lanka ( = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being "disempowered"), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of "doing engagement" in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.

摘要

皮肤利什曼病（CL）是一种寄生虫引起的皮肤疾病，至少在 88 个国家流行，这是一个紧迫的、但往往被“忽视”的公共卫生问题。在本文中，我们讨论了我们在 ECLIPSE 全球健康研究计划中的去殖民社区参与模式，该计划旨在改善 CL 患者的身心健康结果。ECLIPSE 计划有四个相互关联的阶段，每个阶段都有持续和强大的社区参与和投入，指导和告知 ECLIPSE 的所有活动。我们的去殖民方法意味着在巴西、埃塞俄比亚和斯里兰卡，社区参与模式将有所不同。事实上，我们采用批判性人类学方法与社区成员接触，正是这种方法我们在本文中进行了评估。我们所借鉴的数据和材料是通过社区参与活动中的定性研究方法收集的。我们成立了 13 个社区咨询小组（CAG）：巴西（=4）、埃塞俄比亚（=6）和斯里兰卡（=3）。我们通过对数据集的主题分析确定了四个总体主题：（1）建立社区咨询小组，（2）CAG 成员和社区代表性，（3）文化上合适和背景独特的参与，以及（4）研究人员和社区成员之间的关系。在 ECLIPSE 社区参与的第一个阶段，我们揭穿了一些神话（例如关于社区被“剥夺权力”的神话），批评了我们自己的做法（改变了召集 CAG 成员的方法），并庆祝了成功（特别是在充满挑战的 COVID-19 大流行背景下，富有成效的在线参与）。我们的评估揭示了文献中提供的模范社区参与框架与在社区中实际工作的混乱、日常现实之间的差距。在 ECLIPSE 计划中，我们将此类社区参与指导原则中的理想主义原则转化为在资源匮乏的社区中“开展参与”的实际现实。我们的社区参与是基于这些理想原则的，但也适应了当地的社会文化背景，在对研究人员施加的某些资金和监管限制范围内运作。最后，我们总结了一些经验教训，并为全球健康研究中的去殖民社区参与提出了建议。

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本文引用的文献

[1]
The impact of war on the health system of the Tigray region in Ethiopia: an assessment.

BMJ Glob Health. 2021-11

[2]
Reform of research funding processes could pave the way for progress in global health.

Lancet Glob Health. 2021-8

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JMIR Public Health Surveill. 2021-5-14

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Adaptation and performance of a mobile application for early detection of cutaneous leishmaniasis.

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Building a collaborative research community of practice and supporting research engagement in speech-language pathology: identification of stakeholder priorities.

JBI Evid Implement. 2020-12

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Decolonising Global (Public) Health: from Western universalism to Global pluriversalities.

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