"There is no one who helps you with it." Experiences of people with long COVID regarding medical care, therapeutic measures, and barriers in the German healthcare system: results of a qualitative study with four focus groups (preprint)

Background Many people experience long-term symptoms such as fatigue, cognitive problems, or shortness of breath after an acute infection with COVID-19. This emerging syndrome, known as long COVID, is new and complex in many aspects. This study aims to collect the experiences of people with long COVID with ambulatory healthcare structures. Methods Four focus groups were conducted with a total of 23 adults with long COVID in June and July 2022. These discussions were audio-recorded, subsequently transcribed, and analyzed using the qualitative content analysis of Mayring and Kuckartz. Results Fourteen out of 19 participants who had a primary care encounter regarding their long COVID symptoms did not perceive it as helpful. Many respondents reported that their general practitioners did not take their long COVID symptoms seriously and did not refer them to specialists or made therapeutic recommendations. However, some participants reported that they were prescribed non-pharmaceutical therapies (e.g., group meetings supported by psychotherapists, occupational therapy, etc.) that improved their condition. 14 of 23 respondentsperceived care barriers such as providers' lack of awareness of long COVID, poor access to specialists, a lack of specialized care (e.g., long COVID clinics), or high bureaucratic hurdles for specific healthcare services. To improve medical care, participants suggested campaigns to raise awareness of long COVID among healthcare providers and the general population, increase research and government investments regarding the development of treatment structures for long COVID, expanding existing therapeutic services, and establishing one-stop shops for integrated specialist healthcare for people with long COVID. Conclusions Several implications for healthcare professionals and policymakers can be derived from this study: (1) general practitioners should take the symptoms of long COVID seriously, assume a care coordinating role, make referrals, and establish contact with long COVID clinics; (2) care planners should focus on developing interprofessional evidence-based care and treatment approaches for long COVID; (3) existing care structures such as long COVID outpatient clinics should be expanded. Trial registration: The study is registered in the German register for clinical trials (DRKS00026007).

Perceptions of state measures and media coverage during the COVID-19 pandemic by people with long COVID - A qualitative interview study in Germany (preprint)

Background Since its outbreak, the COVID-19 pandemic has been discussed in various media channels. In Germany, state measures such as contact restrictions have been implemented to contain the incidence of infection. Nevertheless, there are many people who have been infected with the coronavirus and are affected by persistent symptoms such as fatigue, shortness of breath, or pain. How these people perceive pandemic-related coverage and state measures has not yet been adequately researched. Methods To address this gap, we conducted guided qualitative interviews with 25 adults with long COVID. The interviews were transcribed in terms of content-semantics and analyzed using qualitative content analysis. Results were then compared with other scientific findings. Results The interviews indicated a high approval of restrictive interventions to protect the public from the consequences of the COVID-19 pandemic in this sample. About three-quarters of the participants rated the pandemic containment measures as appropriate. However, twelve of the 25 respondents were dissatisfied with the media coverage of the pandemic and protective measures. Besides inconsistent coverage, the discourse on coronavirus vaccination was specifically criticized. Several participants felt that the coverage of this issue was one-sided or noted a lack of government resolve. Furthermore, respondents criticized the repeal of state measures such as the mask obligation in Germany. Conclusions Overall, a need for more consideration of the concerns of people with long COVID in the public discourse on the pandemic becomes apparent. Part of an adapted communication strategy should be: (1) a transparent and target group-related information transfer on the newest findings and regulations during the COVID-19 pandemic, (2) an increased presence of the topic, long COVID, in society through various media. Additionally, the relevant public bodies should expand their engagement in this field. Moreover, the findings ot this study could be used as a starting point for a debate on the long-term implementation of measures to protect vulnerable populations. Trial registration: The study is registered in the German register for clinical trials (DRKS00026007).