“成为声音”

An 365英国上市官网 William Beaumont School of Medicine study sheds light on what it’s like to be a polio survivor today — and highlights the need for physicians to be prepared to treat them.

“Post-Polio Syndrome and Polio Survivor Biographies” was led by Amy Halder, 他是OUWB大学医学院的三年级学生. The poster was recognized as the best during OUWB’s 2021 Medical Education Week.

据信这是一项史无前例的研究, the study explores the combination of the polio experience and condition known as post-polio syndrome, the major experiences that polio survivors share in terms of life history, 以及他们如何处理生活中的重大干扰.

The work was done in close conjunction with the Southeast Michigan Post-Polio Support Group.

“What inspired me was I wanted to be the vessel to allow the polio survivors to have their voices heard,哈尔德说。.

特蕾西·泰勒博士.D., associate professor, Department of Foundational Medical Studies is a co-author of the study. 她说，没有很多资金可用于这类研究.

研究的重点之一, she says, 是医生并不总是准备好治疗脊髓灰质炎幸存者吗. The study found that there have been instances where polio survivors have actually had to educate their physicians.

“脊髓灰质炎后影响的是儿童时期患有脊髓灰质炎的人, so it’s this little bubble population from before the vaccine was available who are now elderly,她说。. “There’s this perception out there that people shouldn’t learn about it because they won’t have to worry about it.”

“受过良好教育的群体”

The association between representatives and the Southeast Michigan Post-Polio Support Group dates to the early 2010s.

Taylor connected with members of the group after one of the school’s “Lunch ‘n Learn” events held in 2014. 这次活动的主题是小儿麻痹症.

As a microbiologist — and having had taught about polio previously — Taylor says she was interested in keeping close ties with the organization.

从2015年开始, 泰勒每年都会访问小儿麻痹症幸存者，与他们谈论小儿麻痹症, though she notes “they know more than a virologist knows about polio virus.”

“他们是一个受过良好教育的群体，”她说. “他们都是非常非常棒的人.”

Taylor says she always wanted to do something more with the group, too.

“I wanted to get involved with more community-based education and research,” says Taylor.

这时霍尔德出现了.

“成为声音”

Halder wanted to do a community-based research for her Embark project at OUWB. 她说，具体来说，是与小儿麻痹症有关的东西.

Embark is a required scholarly concentration program of OUWB that provides a mentored introduction to research and scholarship. The four-year longitudinal curriculum consists of structured coursework in research design and implementation, 合规培训, 研究交流, 学术性的陈述, with protected time to develop mentored projects in a wide-range of community and health-related settings.

根据这项研究, 在1954年和1960年研制出疫苗之前, 脊髓灰质炎病毒感染了55多人,美国每年有1万名儿童死亡.S.美国约有2.1万例感染导致瘫痪.

脊髓灰质炎病毒感染康复后长达40年, 许多幸存者患有脊髓灰质炎后综合症, a new weakening in muscles that were previously affected by polio along with muscles that were not originally affected.

正如研究指出的那样, no other research could be found that explored the combination of polio experience and PPS, major experiences that polio survivors shared in terms of life history, 以及他们如何处理生活中的某些干扰, 比如被带离学校，与家人分离.

Halder and Taylor developed the idea for a project that would essentially allow members of the post-polio support group to “leave their mark.”

“Being the voice for a group of people that may not be able to speak up has always been sort of my underlying theme and really what drove me to medical school,哈尔德说。.

For the study, a mixed-methods approach was used to gather qualitative and quantitative data. 调查问题, 焦点小组, 一对一访谈是由Halder开发的, Taylor, 以及其他共同作者Tracy Wunderlich-Barillas, Ph.D.研究培训主任卢卡斯·纳尔逊，M4, OUWB.
Halder says respondents were excited and very eager to share their stories.

出现了几个主题, 包括孤立和孤独, 努力回归“正常生活”,和耻辱.

“即使在我们患上小儿麻痹症很久之后, you know, fine, people said ‘Oh kids can’t come play at your house because that’s a polio house,’”研究中的一个回应如是说.

Yet, 其他主题与决心有关, 毅力, optimism, 以及来自他人支持的重要性.

当被问及他们假想的自传书名时, 一位参与者的回答是“小儿麻痹症是一个跳板”, Not a Dead-End Street’ because “my life would not have been as rich and full without polio,研究表明.

The study concludes that physicians should be aware that polio had major implications in the lives of polio survivors. Further, the study states that support plays a big role in health outcomes of patients living with chronic conditions.

“The long-term goal is to illuminate physicians and society about caring for polio survivors as well as individuals living with other chronic illness/disease physicians may not be always familiar with,这项研究说。. “不管病人的情况如何, it is important to have good listening skills and patients tend to remember those physicians who are willing to educate themselves and learn from patients.”

Halder says her big takeaway from the project is the importance of listening.

“It’s basically what we are taught in medical school — listen to your patients, 有一个积极的, 虚心学习, 不要以为你无所不知,她说。.