Long Covid: Online patient narratives, public health communication and vaccine hesitancy

Miyake, Esperanza; Martin, Sam

doi:10.1177/20552076211059649

Cited by 40 publications

(20 citation statements)

References 34 publications

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“…We observed that the tweets analyzed in this study were slightly positive with words like 'research,' 'support,' 'health,' 'recovery,' and 'hope.' This is different from the study by Miyake et al who reported that the sentiment towards long COVID, particularly in the first wave, was overwhelmingly negative (22%) compared to positive (7%) [ 28 ]. However, our research was conducted during the third wave, not the first wave, and may be reflective of the increasing knowledge and acceptance of long COVID, increased availability or support and research (as exemplified by the keywords of positive sentiments - 'research,' 'support,' 'health,' 'recovery,' and ' hope' ) into long COVID over the ensuing two years.…”

Section: Discussioncontrasting

confidence: 92%

Twitter Sentiment Analysis of Long COVID Syndrome

Awoyemi¹,

Ebili²,

Olusanya³

et al. 2022

Cureus

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Background Long COVID syndrome originated as a patient phrased terminology which was initially used to describe a group of vague symptoms that persisted after recovering from COVID-19. However, it has moved from a patient lingo to a recognized pathological entity which refers to a group of symptoms that lasts weeks or months after the COVID-19 illness. The novelty of this condition, the inadequacy of research on long COVID syndrome, and its origin as a patient-coined terminology necessitated exploring the disease's sentiments and conversations by analyzing publicly available tweets. Method Tweets were extracted using the Twarc2 tool for tweets in the English language with the keywords ( long COVID syndrome, long COVID, post-COVID syndrome, post-acute sequelae of SARS-CoV-2, long-term COVID, long haulers, and chronic COVID syndrome ) between March 25, 2022, and April 1, 2022. The analyses included frequency of the keywords, sentiment analysis, and topic modeling to identify and explore discussion topics over time. A natural language approach and the latent Dirichlet allocation algorithm were used to determine the most shared tweet topics, categorize clusters, and identify themes based on keyword analysis. Results The search yielded 62,232 tweets. The tweets were reduced to 10,670 tweets after removing the duplicates. The vast majority of the tweets originated from the United States of America (38%), United Kingdom (30%), and Canada (13%), with the most common hashtags being #longcovid (36%) and #covid (6.36%), and the most frequently used word being people (1.05%). The top three emotions detected by our analysis were trust (11.68%), fear (11.26%), and sadness (9.76%). The sentiment analysis results showed that people have comparable levels of positivity (19.90%) and negativity (18.39%) towards long COVID. Conclusions Our analysis revealed comparable sentiments about long COVID syndrome, albeit slightly positive. Most tweets connoted trust (positive), fear (negative), and sadness (negative). These emotions were linked with concerns about the infection, pandemic, chronic disability , and governmental policies . We believe this study would be important in guiding information dissemination and governmental policy implementation necessary in tackling long COVID syndrome.

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Section: Discussioncontrasting

confidence: 92%

Twitter Sentiment Analysis of Long COVID Syndrome

Awoyemi¹,

Ebili²,

Olusanya³

et al. 2022

Cureus

View full text Add to dashboard Cite

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“…Existing studies on Long Covid patients have shed light on the importance of online spaces that help patient communities come together around their shared illness. Social media groups, in particular, help facilitate the exchange of knowledge and experience between patients, and raise awareness of their plight ( Callard & Perego, 2021 ; Miyake & Martin, 2021 ; Rushforth et al, 2021 ). Existing research has also contrasted the difference between dominant narratives of Covid-19, which focus on the acute phase of infection rather than the prolonged struggle that Long Covid patients face, which leads to the invisibility of Long Covid patient narratives in the public sphere.…”

Section: Contested Illnesses and Long Covid In The United Statesmentioning

confidence: 99%

“…Long Covid comprises a wide range of ailments ranging from brain fog, fatigue, and prolonged weakness to severe and debilitating conditions causing memory loss, impairment in concentration, and degraded mobility ( Lopez-Leon et al, 2021 ). In a quest to understand better their illness, educate other long-haulers, and gain public recognition for their symptoms, Long Covid patients have turned to each other online to share information and collectively define the condition ( Callard & Perego, 2021 ; Miyake & Martin, 2021 ; Rushforth et al, 2021 ). Even when post-Covid care centers were established to provide integrative care for Long Covid patients, patients continued to play an active role in referring each other to such centers, working with physicians there, and participating in patient-led research to better characterize the condition (e.g., Davis et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment

Au¹,

Capotescu²,

Eyal³

et al. 2022

SSM - Qualitative Research in Health

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“…1 Possible vaccine hesitancy among people with long covid symptoms has been identified through social media discourse. 22 …”

Section: Introductionmentioning

confidence: 99%

Trajectory of long covid symptoms after covid-19 vaccination: community based cohort study

Ayoubkhani

Bermingham

Pouwels

et al. 2022

BMJ

294

244

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Objective To estimate associations between covid-19 vaccination and long covid symptoms in adults with SARS-CoV-2 infection before vaccination. Design Observational cohort study. Setting Community dwelling population, UK. Participants 28 356 participants in the Office for National Statistics COVID-19 Infection Survey aged 18-69 years who received at least one dose of an adenovirus vector or mRNA covid-19 vaccine after testing positive for SARS-CoV-2 infection. Main outcome measure Presence of long covid symptoms at least 12 weeks after infection over the follow-up period 3 February to 5 September 2021. Results Mean age of participants was 46 years, 55.6% (n=15 760) were women, and 88.7% (n=25 141) were of white ethnicity. Median follow-up was 141 days from first vaccination (among all participants) and 67 days from second vaccination (83.8% of participants). 6729 participants (23.7%) reported long covid symptoms of any severity at least once during follow-up. A first vaccine dose was associated with an initial 12.8% decrease (95% confidence interval −18.6% to −6.6%, P<0.001) in the odds of long covid, with subsequent data compatible with both increases and decreases in the trajectory (0.3% per week, 95% confidence interval −0.6% to 1.2% per week, P=0.51). A second dose was associated with an initial 8.8% decrease (95% confidence interval −14.1% to −3.1%, P=0.003) in the odds of long covid, with a subsequent decrease by 0.8% per week (−1.2% to −0.4% per week, P<0.001). Heterogeneity was not found in associations between vaccination and long covid by sociodemographic characteristics, health status, hospital admission with acute covid-19, vaccine type (adenovirus vector or mRNA), or duration from SARS-CoV-2 infection to vaccination. Conclusions The likelihood of long covid symptoms was observed to decrease after covid-19 vaccination and evidence suggested sustained improvement after a second dose, at least over the median follow-up of 67 days. Vaccination may contribute to a reduction in the population health burden of long covid, although longer follow-up is needed.

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Long Covid: Online patient narratives, public health communication and vaccine hesitancy

Cited by 40 publications

References 34 publications

Twitter Sentiment Analysis of Long COVID Syndrome

Twitter Sentiment Analysis of Long COVID Syndrome

Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment

Trajectory of long covid symptoms after covid-19 vaccination: community based cohort study

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