Expanding Cross-Cultural Knowledge of Long-Term COVID-19 Symptoms
Respond Crisis Translation partners with Research Aid Networks to translate shared experiences of “Long COVID” into eight widely spoken languages
At the time of writing, scientific understanding of the SARS-CoV-2 virus has established a set of COVID-19 symptoms that are now well-known: including but not limited to fatigue, shortness of breath, cough, pain in joints and chest, dizziness when standing, fast or pounding heartbeat, and loss of smell or taste.(*1) Recent research has revealed that these symptoms can persist in individuals following the onset of infection. The prevalence of these long-term symptoms is increasingly well-documented in the scientific literature. One study from Sweden’s Karolinska Institute published in JAMA found that eight months after mild COVID-19, one in ten people sampled had at least one moderate to severe symptom perceived as detrimental to their work, social or home life.(*2) In another study, approximately 80% of patients hospitalized with COVID-19 reported at least one persistent symptom at 2 months following acute infection. (*3)
Beneath these concerning statistics are the ongoing experiences of individuals across the globe living with lasting symptoms of COVID-19. With little support available for patients in many countries outside the United States and the United Kingdom, says Dr. Jeremy Rossman, a partner of Respond Crisis Translation at Research Aid Networks, there is a clear and urgent need to raise awareness of “Long COVID” in a myriad of widely spoken languages.
To meet this need, Research Aid Networks enlisted Respond Crisis Translation for the conversion of a concise visual segment profiling the human experience of Long COVID from English into eight languages: Hindi, Italian, Portuguese, Chinese (Mandarin), Japanese, German, Polish, and Dutch.
Project Manager George O’Hara led this translation to completion, coordinating and ensuring the input of translators from across Respond Crisis Translation’s on-call language teams to deliver a resource that can now be disseminated with diversity and breadth.
The importance of this video, in Dr. Rossman’s words, is “that Long COVID patients around the world know that they are not alone, and that together, we can advocate for change”. Together with Respond Crisis Translation, Research Aid Networks is now aiming to help spur change in how long-term COVID-19 is recognized, and, consequently, how it is treated, around the world. Dr. Rossman commented:
“Organizations like Respond Crisis Translation are critical for increasing our reach and providing critical information to countries and people around the world.”
Volunteer Spotlights
Teamwork and collaboration at Respond Crisis Translation has been central to the success of this project. Notably, its goal of raising awareness about Long COVID resonates with several incisive insights from contributing translators about:
The concrete reach and impact of their work
Persistent barriers to accessing information about COVID-19, Long COVID, and vaccination against COVID-19, in diverse language settings
Aleksandra Tutka, who translated the video into Polish:
“The project is very helpful to the community – while a lot of emphasis is put into the current COVID situation and vaccination, long term effects receive very little coverage.”
“Poland, until very recently, was still struggling with lack of hospital beds and vaccination logistics. Due to this, addressing long term effects of COVID is not a priority for the health system at the moment. Also, COVID tests are still not free for all, and this deters many people from getting tested and potentially diagnosed.”
Aakriti Jain, who translated the video into Hindi:
“This project is important because people in India are still reeling under the post-COVID effects which have become a part of their live months after contracting the virus. It has been indeed important to know if “we will ever get better” – personally, I too know people who are still experiencing great fatigue and other residual infections bacterial infections after recovering from the virus.”
“I think that a great barrier to understanding COVID-19 in India is misinformation. This is the misinformation spread through not only the social media, but also as a result of political interests which can often fall short of heeding scientific inquiry! Much was predicted by scientists, but at times, insufficient governance and, therefore, a lack of proper information, has led to a more severe second wave in India. If widespread vaccination does not accelerate soon, we could soon be looking at third and fourth waves of a similar scale.”
Giulia Brugnetti, who translated the video into Italian:
“I'm so glad I took part in it, I really feel like I'm making a difference. Some of my friends and relatives got COVID-19 and some still suffer from long COVID, so it was really useful to discover something more about it, even from a personal perspective.”
“A barrier to understanding Long COVID in the Italian language is the expression itself, because there’s no fixed translation for it.”
Luka Pauwelyn, who translated the video into Dutch:
“The project is definitely a good way of filling the gaps of the crisis response to Covid-19. Not much research, funding or efforts have gone into rehabilitation or recovery of those who were victims of Covid-19, despite not being in emergency hospital beds”
“From the start of the pandemic, I have placed most of my interest and time in supporting those who have been indirect victims of Covid-19. Whether it be children who missed schools, exhausted parents or caregivers of people with disabilities, and anyone who has had to isolate for so long and suffered a decline in their mental health. Some of us might have tended to perceive the effects of Covid-19 on individuals who survived it as unimportant. In some cases, people are angry, frustrated and feel a certain resentment towards those who have Covid-19 in their friend group or household, because it affects their freedoms and daily life. This video is important in reminding us of the true impact of a polarizing virus on individuals’ physical and mental health, and of the possibilities of isolation and exclusion beyond the initial stage of illness.”
“It is interesting to think of languages as different ways of expressing, defining and labelling illness. Despite medicine being universal, there are so many different ways in which individuals, in different cultures and languages, describe their illness. Some might express mental distress as pain in different parts of their body, while others might feel stronger pain from physical harm in their brains. All in all, these can be sometimes wrongly interpreted by others, which can have reductive consequences for a person’s status, their dignity and their experience of illness. Translating someone's symptoms word by word, therefore, cannot not always be simple. Some words in a language are explained by a whole sentence in another, while some concepts simply do not exist in another culture. If we could all explain each other's languages to each other, we would definitely have a stronger empathy for one another's feelings and struggles.”
Lirong Shi, who translated the video into Mandarin:
“At first, I wasn't so sure about the symptoms of COVID-19; then I had a friend who got COVID and told me how he had felt; all the descriptions in this video suddenly became clear to me and that's when I realize how people with this really suffer.”
“I think the subject of the video is to educate people about the situation of Long COVID and also to tell people with Long COVID that they are not alone and they are in need. It is very sad and inspiring and it reveals that there are so many things we need to do.”
Christiane D., who translated the video into German:
“I enjoyed this project with Respond Crisis Translation because it's rare that I get to work on a project in German, and specifically one that directly concerns me.”
“Germany has had really tough COVID restrictions. We believe that science trumps politics, so stores are closed, you can't leave the house at night, you can't meet more than one person at a time. We all want this to be over. We want to live life, look toward the future, go out and meet our friends and families again.”
“The ‘just get on with it’ attitude we tend to have in Germany can make it hard to talk about Long COVID. Who wants to complain about an undefinable "brain fog" when other people are hooked up to respirators? In my case, I had COVID six months ago and fully recovered, though I am still slightly out-of-breath whenever I walk up a hill. But those suffering from Long COVID have symptoms that prevent them from leading their normal, active life with the responsibilities it entails, and on top of that they have to deal with guilt and shame.”
“With this Respond project, we brought awareness to Long COVID and reminded everyone a) why we must continue to follow health guidelines to stop the spread, and b) that your friend who had COVID just might need a helping hand."
(*1) COVID-19 (coronavirus): Long-term effects. Mayo Clinic. https://www.mayoclinic.org/coronavirus-long-term-effects/art-20490351
(*2) Havervall S, Rosell A, Phillipson M, et al. Symptoms and Functional Impairment Assessed 8 Months After Mild COVID-19 Among Health Care Workers. JAMA. 2021;325(19):2015–2016. doi:10.1001/jama.2021.5612
(*3) Carfì A, Bernabei R, Landi F, for the Gemelli Against COVID-19 Post-Acute Care Study Group. Persistent Symptoms in Patients After Acute COVID-19. JAMA. 2020;324(6):603–605. doi:10.1001/jama.2020.12603
