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CIHR-funded打击耻辱和研究social isolation in Ghana

研究支持淋巴丝虫病患者的健康,福祉,社会包容和文化理解,这是一种被忽视和受污名的蚊子传播的疾病

Dr. Alex Kwarteng and a team of research assistants are working with Dr. Kristi Kenyon to reduce stigma and improving community understanding of LF.

When University of Winnipeg Human Rights researcherKristi Kenyon博士heard aboutDr. Alex Kwarteng‘s Lymphatic Filariasis (LF) research, and the challenges of reducing stigma and improving community understanding of the condition, a lightbulb went off.

我们旨在改善淋巴丝虫病患者的健康和福祉。

Kristi Kenyon博士

她说:“我一直在从事艾滋病毒研究,尽管大不相同,但面临类似的问题。”“I asked whether he’d considered collaborating with a social scientist – and from there we began to sketch out a project aimed at meeting a real need in the lives of people living with a highly stigmatized health condition – and a chance to do more by bringing our areas of expertise together.”

LF is one of the world’s leading causes of permanent and long-term disability. It is a neglected and stigmatized mosquito-borne illness that damages the lymphatic system, leading to swollen and disfigured limbs, breasts, and genitals. In addition to its debilitating physical effects, the disease also leads to harmful social isolation and stigmatization.

克里斯蒂·肯尼恩(Kristi Kenyon)

Kristi Kenyon博士。提供的照片。

The project,Combating Stigma and Social Isolation Among People Living with Lymphatic Filariasis in Ghana through Culturally Appropriate Interventions,由于2019年的项目赠款,从CIHR获得了355,725美元的提升,该项目拨款旨在开发一种具有文化敏感的,基于证据的干预措施,以促进LF患者的健康和福祉。由于Covid-19的延迟,数据收集现在正在进行中。

“Without the support of CIHR, this international, interdisciplinary project simply would not be possible,” said Kenyon, who is co-principal investigator along with Kwarteng, a senior lecturer at Kwame Nkrumah University of Science and Technology in Ghana.

人们living with LF typically experience a triple burden; the physical impact of the disease, social stigma, and declining mental health.

“Current literature is treatment-focused and largely neglects the cultural and social context of the illness, with limited attention paid to stigma and few stigma-oriented interventions,” said Kenyon. “Drawing together an interdisciplinary team of researchers from Canada and Ghana, our project addresses five aims focused on health, wellbeing, social inclusion, and cultural understandings of LF with a geographic focus on areas of Ghana particularly hard hit by the disease.”

共同努力减少污名

研究团队包括共同申请人玛丽·阿西里菲(Mary Asirifi)博士,梅斯万大学;Veronica Fynn Bruey博士, Athabasca University;Regiane Garcia博士, affiliated researcher at Global College and Simon Fraser University; andColleen McMillan博士,滑铁卢大学;以及合作者乔纳森·罗伯茨博士,圣文森特山大学。

With their combined expertise in social work, law, science, health, and social sciences, the research team hopes to make a difference in the lives of more than 120 million people in 72 countries worldwide who are living with LF.

野外团队努力从泥泞中取出车辆。

The field team makes their way to villages during Ghana’s rainy season. Photo provided.

Kwarteng notes, “this Interdisciplinary approach to study LF has been eye-opening. I wish I knew some of the things I do now in LF research some 10 years back.”

Nursing scholar Mary Asirifi, agrees, “Working with researchers with various areas of expertise provides me the opportunity to gain new knowledge in research methodologies while sharing my experience and expertise with the team in conducting research with health care workers in Ghana.”

Roberts, a historian of medicine explains, “Only a multi-pronged approach, with a healthy respect for both traditional healing and western medical perspectives, can get to the bottom of the stigma associated with this disease.”

麦克米伦(McMillan)在反思她在社会工作和参与式方法方面的背景时补充说:“这个项目象征着方法论方法的和谐合并,以纪念那些与LF一起生活并体现真正的集体和参与方法的人的生活经验。”

For Fynn Bruey involvement in the project is very personal, “I survived nine years of being a refugee in Ghana. As a pan-Africanist who strongly believes in the African philosophy of Sankofa (returning to my traditional roots) and Ubuntu (I am because we are), being a part of this research offers a unique opportunity to give back to the country and its people in a meaningful way.”

加西亚还说,该项目靠近她的心。她拥有亲眼目睹与艾滋病毒相关的污名对她在法律职业生涯开始时在巴西工作的人的健康和福祉的影响的第一手经验。

This passion and commitment is shared by the data collection team of Emmanuel Kobla Atsu Amewu, Priscilla Kini, Samuel Apoku Asiedu, Ebenezer Asiedu, Efiba Vidda Kwarteng, and Winnipeg-based research assistant Ada Chukwudozie.

塞缪尔·阿波库(Samuel Apoku Asiedu)解释说:“我认为这是一种希望和绝望的感觉,因为我想到的是LF患者在社区中等待我们。”

Developing culturally sensitive interventions

Alex Kwarteng headshot

Dr. Alex Kwarteng. Photo provided.

The way individuals understand and experience LF is varied.

The team’s preliminary research shows, for example, that people living with LF in the study area often do not understand the disease in the same way as their health care practitioners – often attributing it to spiritual causes or cold weather. Gender identity also affects how people experience the disease both physically and socially.

Little is known about how transgender and nonbinary people experience LF. With this in mind, the research team is carrying out a series of focus groups, one-on-one interviews, and employing arts-based methods that create space for people with LF of different gender identities to share their experiences.

通过这项研究,该团队希望更好地了解该疾病的社区看法,解释和文化观点,并最终设计一个框架,用于开发适合文化的和有效亚愽娱乐app的干预措施,这些干预措施可以在LF处于地方性的其他非洲国家中采用。

“我们旨在通过对污名和孤立的根本原因,发展,实施和评估对文化敏感的干预措施的理解,以预防和减轻这些经历以及创造一种对文化敏感的干预措施的了解,以提高LF的健康和福祉。她说:“框架有助于使这种干预适应其他情况。”

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