IntroductionMany people experience persistent or new-onset symptoms such as fatigue or cognitive problems after an acute infection with COVID-19. This phenomenon, known as long COVID, impacts physical and mental wellbeing, and may affect perceived quality of life and occupational perspectives likewise. The aim of this study is to gain a deeper understanding of how people with long COVID experience health-related restrictions in their daily life and their occupational situation, and to identify key challenges they face.MethodsGuided qualitative interviews were conducted with 25 people with long COVID. The interviews were transcribed according to Dresing/Pehl and Kuckartz and analyzed using qualitative content analysis. Afterward, a systematic comparison of the data and a reflection under consideration of lifeworld-theoretical approaches (Berger and Luckmann) were carried out.ResultsThe interviews revealed that many participants have severe symptoms which strongly impair them in perform daily and work-related activities, and in their personal interests. Many interviewees already reach their stress limit during routine household activities or childcare. Of the 25 participants, 19 experienced limitations in pursuing leisure activities, and 10 of the 23 interviewees with jobs reported being on sick leave for several months. Several respondents who had vocational reintegration are still affected by ongoing symptoms that affect their work performance considerably. This leads to uncertainty, role conflicts, a decline in social contacts, and decreased incomes, which contribute to an impairment in their quality of life.ConclusionsThis study shows the huge need for specific support for people with long COVID in different areas of life. To prevent people with long COVID from finding themselves in social and economic precarity, decision-makers should develop strategies to systematically support them in their sustainable reintegration into the workforce. The focus should be on creating long COVID-sensitive workplaces, compensating for decreased incomes, and improving access to relief services such as vocational reintegration. We argue, that a shift of perspectives is necessary and that long COVID should be considered rather as a “social disease” with considerably impairments in the social life of those affected.Trial registrationThe study is registered in the German register for clinical trials (DRKS00026007).
Background With population-wide vaccination availability, the global COVID-19 pandemic entered a new phase. Despite vaccination status, some people who were infected with SARS-CoV-2 experience long-term symptoms. Objective In this study, we aim to characterize the long-term effects of SARS-CoV-2 infection and the pandemic. We also aim to build symptom clusters and determine risk factors for developing long COVID symptoms. Furthermore, we assess social participation and health-related quality of life in patients with long COVID and in the general population during a global pandemic. Methods With a mixed-methods, web-based approach, we aim to recruit 2000 people in Germany who are older than 18 years and can provide informed consent. In the quantitative arm of the study, we identify symptoms of and predictive factors for long COVID manifestations with cluster analysis and assess social participation during the pandemic with standardized questionnaires. The qualitative arm of the study uses individual interviews and focus group discussions to better understand the illness experience of persons who experience long COVID. Results Recruitment started in September 2021. Up until July 2022, we recruited approximately 4500 participants via our web-based database. Conclusions This study aims to build an innovative, patient-centered, web-based research platform appropriate for the pandemic by minimizing physical contact between study personnel and participants. All study activities are designed to better understand the long COVID syndrome, social participation during the pandemic, and the illness experiences of persons affected by long COVID. Trial Registration German Clinical Trial Registry DRKS00026007; https://tinyurl.com/yh282fkt International Registered Report Identifier (IRRID) DERR1-10.2196/38718
Background Immunocompromised people (ICP) and elderly individuals (older than 80 years) are at increased risk for severe coronavirus infections. To protect against serious infection with SARS-CoV-2, ICP are taking precautions that may include a reduction of social contacts and participation in activities which they normally enjoy. Furthermore, for these people, there is an uncertainty regarding the effectiveness of the vaccination. The COVID-19 Contact (CoCo) Immune study strives to characterize the immune response to COVID-19 vaccination in immunocompromised, elderly people, and patients with hematological or oncological diseases. The study uses blood-based screenings to monitor the humoral and cellular immune response in these groups after vaccination. Questionnaires and qualitative interviews are used to describe the level of social participation. Methods The CoCo Immune Study is a mixed methods prospective, longitudinal, observational study at two large university hospitals in Northern Germany. Starting in March 2021, it monitors anti-SARS-CoV-2 immune responses and collects information on social participation in more than 600 participants, at least 18 years old. Inclusion criteria and subcohorts: Participants with (1) regularly intake of immunosuppressive medication (ICP-cohort) or (2) age ≥ 80 years (80 + -cohort). Additionally, patients with current or former (3) myeloid, (4) lymphatic disease or (5) solid tumor under checkpoint inhibition (3–5: HO-cohort). Exclusion criteria: (1) refusal to give informed consent, (2) contraindication to blood testing, (3) inability to declare consent. Participants complete a questionnaire at four different time points: prior to full vaccination, and 1, 6 and 12 months after completed vaccination. In addition, participants draw blood samples themselves or through a local health care provider and send them with their questionnaires per post at the respective time points after vaccination. Patients of the HO cohort dispense additional blood samples at week 3 to 12 and at month 6 to 9 after 2nd vaccination to gain additional knowledge in B and T cell responses. Selected participants are invited to qualitative interviews about social participation. Discussion This observational study is designed to gain insight into the immune response of people with weakened immune systems and to find out how social participation is affected after COVID-19 vaccination. Trial registration: This study was registered with German Clinical Trial Registry (registration number: DRKS00023972) on 30th December 2020.
Zusammenfassung Ziel der Studie Cochlea-Implantate können Menschen mit einer erworbenen, progredient verlaufenden Ertaubung helfen, ihr Hörvermögen wiederzuerlangen. Die betroffenen Personen durchleben allerdings auch einen jahrelangen Prozess der Adaptation, in dem sie ein neues, technisch unterstütztes Hören lernen müssen. Die Studie zeigt, wie Betroffene diesen Prozess erleben und ob ihre Erwartungen an das Implantat erfüllt werden. Methodik Im Rahmen einer qualitativen Studie wurden 50 Cochlea-Implantat-Träger*innen in einem Leitfaden-gestützten Interview befragt. 30 Personen wurden über den Kontakt zu Selbsthilfegruppen rekrutiert, weitere 20 Personen über ein Hörzentrum nach Vermittlung durch einen leitenden Audiologen. Die Interviewten gaben Auskunft über ihre persönlichen Erfahrungen mit den operierenden Kliniken, über das Erleben der sozialen, kulturellen und beruflichen Teilhabe sowie über die auch nach der CI-Versorgung bestehenden Hörbarrieren im Alltag. Die Befragten trugen die Hörprothese maximal drei Jahre, ein Zeitrahmen, innerhalb dessen die meisten der Folgetherapien beendet sind und der initiale Lernprozess mit dem CI als abgeschlossen gilt. Ergebnisse Auch mit einem Cochlea-Implantat bleiben Kommunikationshindernisse bestehen. Erwartungen eines vollen Hörverstehens im Freundes- und Bekanntenkreis werden nur bedingt erfüllt. Schwierigkeiten im Umgang mit einer hochtechnisierten Hörprothese sowie das Erleben als „Fremdkörper“ erschweren die Akzeptanz eines CIs. Schlussfolgerung Die Beratung in der Versorgung mit Cochlea-Implantaten sollte sich an realistischen Zielen und Erwartungen orientieren. Die Versorgung mit einem CI lässt sich verbessern, wenn angeleitete Hörtrainings und Kommunikationsangebote ausgeweitet werden. Auch können ortsnahe Versorgungsstrukturen wie zum Beispiel über zertifizierte Hörakustiker einbezogen werden und dabei helfen, Unsicherheiten abzubauen.
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