‘Being the voice’

365英国上市官网威廉博蒙特医学院的一项研究揭示了当今脊髓灰质炎幸存者的感受，并强调了医生为治疗他们做好准备的必要性.

“脊髓灰质炎后综合症和脊髓灰质炎幸存者传记”由艾米·哈尔德(Amy Halder)领导, a third-year medical student at OUWB. 该海报在OUWB的2021年医学教育周上被评为最佳海报.

Believed to be first-of-a-kind research, 这项研究探讨了小儿麻痹症经历和后小儿麻痹症综合症的结合, 脊髓灰质炎幸存者在生活史上分享的主要经历, and how they manage big disruptions in their lives.

这项工作是与密歇根东南部脊髓灰质炎后支持小组密切合作完成的.

“激励我的是，我想成为一艘船，让脊髓灰质炎幸存者的声音被听到,” says Halder.

Tracey 泰勒, Ph.D.他是基础医学研究系副教授，也是这项研究的合著者. She says there isn’t a lot of money available for such research.

Among the key points of the study, 她说, is that physicians aren’t always prepared to treat polio survivors. 该研究发现，在某些情况下，脊髓灰质炎幸存者实际上不得不教育他们的医生.

“Post-polio affects individuals who had polio as children, 所以这是在疫苗问世之前的一小群人，他们现在已经上了年纪,” 她说. “有一种观点认为，人们不应该了解它，因为他们不必为此担心.”

‘A very educated group’

众议员与密歇根东南部脊髓灰质炎后支持小组之间的联系可以追溯到2010年代初.

泰勒在2014年学校举办的一次“午餐学习”活动后结识了该组织的成员. The topic of the event was polio.

泰勒说，作为一名微生物学家——之前也教过小儿麻痹症——她有兴趣与该组织保持密切联系.

Starting in 2015, 泰勒 made annual visits to talk with polio survivors about polio, 尽管她指出“他们比病毒学家对脊髓灰质炎病毒的了解还要多.”

“They’re a very educated group,” 她说. “And they’re just wonderful, wonderful people.”

泰勒说，她也一直想和乐队一起做更多的事情.

泰勒说:“我想参与更多以社区为基础的教育和研究.

That’s when Halder entered the picture.

‘Being the voice’

Halder想为她在OUWB的Embark项目做一个基于社区的研究. Specifically, 她说, something related to polio.

Embark是OUWB的必修学术集中课程，为研究和奖学金提供指导. 四年制纵向课程包括研究设计和实施方面的结构化课程, compliance training, research communication, and scholarly presentation, 在受保护的时间内，在广泛的社区和健康相关环境中开发受指导的项目.

According to the study, prior to the development of vaccines in 1954 and 1960, polio virus infected more than 55,000 children annually in the U.S., with about 21,000 of the infections leading to paralysis.

Up to 40 years post-recovery from a polio virus infection, many survivors suffer from post-polio syndrome, 先前受脊髓灰质炎影响的肌肉以及最初未受影响的肌肉出现了新的衰弱.

As the study notes, 没有发现其他研究将脊髓灰质炎经验与PPS相结合, 脊髓灰质炎幸存者在生命历程中分享的主要经历, and how they managed to deal with certain disruptions in their lives, such as being taken away from school and separated from family.

Halder和泰勒提出了一个项目的想法，这个项目基本上可以让脊髓灰质炎后支持小组的成员“留下自己的印记”.”

“为一群可能无法发声的人发声一直是我的潜在主题，也是驱使我进入医学院的真正原因,” says Halder.

本研究采用混合方法收集定性和定量数据. Questions for surveys, focus groups, and one-on-one interviews were developed by Halder, 泰勒, and additional co-authors Tracy Wunderlich-Barillas, Ph.D., director of 研究 Training, and Lucas Nelson, M4, OUWB.
哈尔德说，受访者很兴奋，非常渴望分享他们的故事.

Several themes emerged, including isolation and loneliness, struggles to return to “normal life,” and stigma.

“Even long after we had polio and we were, 你知道, 细, 人们说‘哦，孩子们不能来你家玩，因为那是小儿麻痹症之家,’” states one response in the study.

然而,, other themes were related to determination, perseverance, 乐观, and the importance of support from others.

“When asked the titles of their hypothetical autobiographies, one participant responded with ‘Polio as a Springboard, 不是死胡同”，因为“如果没有小儿麻痹症，我的生活就不会如此丰富和充实。,” states the study.

该研究的结论是，医生应该意识到脊髓灰质炎对脊髓灰质炎幸存者的生活有重大影响. 进一步, 研究表明，支持在慢性病患者的健康结果中起着重要作用.

“长期目标是让医生和社会了解如何照顾脊髓灰质炎幸存者以及医生可能不太熟悉的其他慢性疾病/疾病患者,” says the study. “Regardless of a patient’s condition, 拥有良好的倾听技巧是很重要的，病人往往会记住那些愿意自我教育和向病人学习的医生.”

哈尔德说，她从这个项目中得到的最大收获是倾听的重要性.

“这基本上是我们在医学院学到的——倾听你的病人, have an active, open mind to learn, and don’t think 你知道 it all,” 她说.