How do people with long COVID utilize COVID-19 vaccination and rehabilitation services and what are their experiences with these services? results of a qualitative study with 48 participants from Germany.

BACKGROUND: Studies estimate that at least 7.5% of adults are affected by long-term symptoms such as fatigue or cognitive impairment after the acute phase of COVID-19. COVID-19 vaccination may reduce the risk of long COVID. Rehabilitation can have a positive impact on recovery. This study aims to present the experiences of people with long COVID with COVID-19 vaccination and rehabilitation. Such research is important because perceptions of these measures can impact healthcare utilization and health status. METHODS: 48 adults with long COVID participated in this qualitative study, 25 of them in one-on-one interviews and 23 in focus groups. Participants were recruited via calls for participation on the websites and social media channels of two university hospitals and with the help of respondents' networks. The conversations were audio-recorded, transcribed, and analyzed using qualitative content analysis. Subsequently, the results were compared, interpreted, and discussed by scientific literature. RESULTS: 35 study participants reported that they had received a COVID-19 vaccination and 16 of them stated that they had utilized a rehabilitation service. These participants had varying experiences with COVID-19 vaccination and rehabilitation. Nine of them stated that they developed long COVID despite vaccination before COVID-19. Ten participants reported vaccine reactions, and two participants reported severe side effects. Two participants reported persistent deterioration of their long COVID symptoms after vaccination. This led to uncertainty about the safety, benefits, and handling of COVID-19 vaccination. However, most participants perceived the vaccine as effective regarding milder COVID-19 sequelae. Four participants felt their rehabilitation was helpful and four participants felt it was unhelpful. Two persons found the combination of inpatient rehabilitation and rehabilitation sport helpful. CONCLUSIONS: Several implications can be derived from this study: (1) researchers should explore the effects of COVID-19 vaccination on long COVID symptoms; (2) vaccination campaigns should be more responsive to the perspectives of people with long COVID on vaccination; (3) care planners should build rehabilitation facilities specialized in long COVID; (4) rehabilitation providers should train their professionals regarding long COVID and develop rehabilitation programs tailored to different clinical pictures. TRIAL REGISTRATION: German register for clinical trials DRKS00026007, 09 September 2021.

"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.

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 respondents perceived 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. The overarching goal must be to develop consistent guidelines for long COVID diagnosis, care, and treatment. TRIAL REGISTRATION: The study is registered in the German register for clinical trials (DRKS00026007, first registration on 09/09/2021).

[Improving Social Participation through Cochlear Implants for Hearing Impaired Persons? On the Ambivalence of Human-Machine-Interaction and the Importance of Psycho-Social Support]. / Mehr soziale Teilhabe für Hörgeschädigte durch Cochlea-Implantate? Zur Ambivalenz der Mensch-Maschine-Interaktion und zum Stellenwert psycho-sozialer Begleitung.

AIM OF THE STUDY: Cochlea implants help persons that suffer from deafness over time to regain hearing capacity. However, persons with CI implants experience year-long processes of adapting to technology-assisted hearing. The study highlights how people experience those processes and how they deal with changing expectations. METHODS: Within this qualitative study, 50 cochlear implant recipients were interviewed about their personal experiences with the supplying clinics. 30 persons were recruited through self-help groups; another 20 persons were recruited through a learning center for hearing-impaired persons. They were asked about their experiences in social, cultural and professional participation as well as hearing barriers they still face in everyday life after their CI fitting. Participants had been wearing CI devices for a maximum of three years. This is a timeframe when most subsequent therapies have ended. Also, the initial phase of learning to handle the CI is supposed to be over. RESULTS: The study shows that even with a cochlear implant communication barriers remain. People's expectations are not met when complete comprehension of listening during conversations is not achieved. Difficulties in dealing with a high-tech hearing prosthesis and experiencing a "foreign body" are obstacles that lower acceptance of CI. CONCLUSION: Counselling and support preparing the use of cochlea implants should be guided by realistic goals and expectations. Guided training and communication courses can help, including local care such as certified hearing aid acousticians. Those elements can increase quality and reduce uncertainty.

SARS-CoV-2-specific immune responses in elderly and immunosuppressed participants and patients with hematologic disease or checkpoint inhibition in solid tumors: study protocol of the prospective, observational CoCo immune study.

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.

[Improving Social Participation through Cochlear Implants for Hearing Impaired Persons? On the Ambivalence of Human-Machine-Interaction and the Importance of Psycho-Social Support]. / Mehr soziale Teilhabe für Hörgeschädigte durch Cochlea-Implantate? Zur Ambivalenz der Mensch-Maschine-Interaktion und zum Stellenwert psycho-sozialer Begleitung.

AIM OF THE STUDY: Cochlea implants help persons that suffer from deafness over time to regain hearing capacity. However, persons with CI implants experience year-long processes of adapting to technology-assisted hearing. The study highlights how people experience those processes and how they deal with changing expectations. METHODS: Within this qualitative study, 50 cochlear implant recipients were interviewed about their personal experiences with the supplying clinics. 30 persons were recruited through self-help groups; another 20 persons were recruited through a learning center for hearing-impaired persons. They were asked about their experiences in social, cultural and professional participation as well as hearing barriers they still face in everyday life after their CI fitting. Participants had been wearing CI devices for a maximum of three years. This is a timeframe when most subsequent therapies have ended. Also, the initial phase of learning to handle the CI is supposed to be over. RESULTS: The study shows that even with a cochlear implant communication barriers remain. People's expectations are not met when complete comprehension of listening during conversations is not achieved. Difficulties in dealing with a high-tech hearing prosthesis and experiencing a "foreign body" are obstacles that lower acceptance of CI. CONCLUSION: Counselling and support preparing the use of cochlea implants should be guided by realistic goals and expectations. Guided training and communication courses can help, including local care such as certified hearing aid acousticians. Those elements can increase quality and reduce uncertainty.

[Experiences of people with Long COVID in their medical accompaniment and in the social environment]. / Erfahrungen von Menschen mit Long COVID bei ihrer ärztlichen Begleitung und im sozialen Umfeld.

BACKGROUND: Permanent health impairments after a COVID-19 infection can lead to a lack of social participation and pronounced emotional stress. The aim of this study was to find out how Long COVID affects the social activities of those affected and understand the role that medical support and the immediate social environment play in this. METHODS: Between January and May 2022, 25 participants with long COVID were interviewed about their health situation, their perception of health care in Germany, and their social and professional context. The interviews, which were mainly conducted online, were analyzed for content, and the results were assessed using lifeworld-theoretical approaches. RESULTS: The participants reported a variety of health symptoms such as fatigue, shortness of breath, and cognitive impairments. The majority of respondents had a pessimistic attitude toward a timely recovery. Most participants perceived the medical support for long COVID as inadequate. Long waiting times for specialist appointments and the lack of acceptance of the health impairment by some doctors lead to an increase in existing uncertainties. Long COVID also had a major impact on respondents' social life. Many participants referred to a burdensome decline in the number of meetings with family and friends. Many respondents avoided physical contact with friends and family members due to a high level of fear of infection. Some participants explained that they separated themselves from people in their environment because they did not take their precarious situation seriously. However, an important resource was the close circle of family and friends from whom the majority of the interviewees received support. DISCUSSION: While other research studies particularly emphasize the comprehensive psychological and emotional consequences of long COVID, such as identity conflicts, existential angst, or depression, the present study shows that a lack of understanding from medical professionals as well as heavily delayed treatment leave the interviewees in a state of emotional void. CONCLUSIONS: The findings show a considerable need for support among people with health impairments after a COVID-19 infection. Empathic and empirically based counseling and support by general practitioners as well as improvement of access to rehabilitative services can provide substantial support for people with long COVID.

Parenting and Gender as Impact Factors for Social Participation, Quality of Life, and Mental Health in Long COVID.

OBJECTIVES: This study aims to investigate the impact of gender and parental tasks on social participation, health-related quality of life (hrQoL), and mental health in persons with long COVID. METHODS: A mixed-methods approach was followed including a cross-sectional web-based survey and semi-structured interviews. Multivariable linear regressions were used to quantify the effect of gender and parenting tasks on social participation, hrQoL, and mental health. Qualitative data from interviews with participants experiencing long COVID symptoms was analyzed using content analysis. RESULTS: Data from 920 participants in the quantitative study and 25 participants in the qualitative study was analyzed. Parenting tasks were associated with increased impairments in family and domestic responsibilities in persons with long COVID compared to lower impairments in persons without long COVID (P = .02). The qualitative data indicate that coping with long COVID and pursuing parenting tasks limit participants' ability to perform leisure activities and attend social gatherings. In long COVID, men had higher anxiety symptoms than women, and in those without long COVID, the opposite was observed (P < .001). In the qualitative study, participants expressed feelings of dejection and pessimism about their future private, occupational, and health situations. No differences between the genders could be observed. CONCLUSIONS: Long COVID is associated with impairments in family and domestic responsibilities in individuals who have parenting tasks. Among participants with long COVID, anxiety symptoms are higher in men than women.

How do long COVID patients perceive their current life situation and occupational perspective? Results of a qualitative interview study in Germany.

Introduction: Many 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. Methods: Guided 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. Results: The 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. Conclusions: This 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 registration: The study is registered in the German register for clinical trials (DRKS00026007).

How do immunocompromised people experience the changes in their working lives during the COVID-19 pandemic? Results from a mixed-methods study in Germany.

Background and aims: The COVID-19 pandemic has a major impact on many areas of life, including many people's job situations. Not everyone is affected in the same way - people with chronic conditions may experience increased mental stress and social problems. In this study, we focus on immunocompromised people (ICP), who are at high risk for a severe course of COVID-19. Our aim was to investigate the level of social participation during the pandemic, focusing on how ICPs perceive changes in their working lives. Methods: We applied a mixed-methods concurrent triangulation design with qualitative interviews (N = 13) and a quantitative cross-sectional survey with N = 179 participants. This approach allowed us to gain deep insights into the experience of occupational-social participation. Results: Qualitative results show that working from home during the COVID-19 pandemic was seen as a relief by many, as medical necessities could be integrated more easily into everyday life. Understanding and consideration of their professional social network were essential for all respondents. Our interview data hint at an influence of the family situation (e.g., having children) and the relationship of the ICP to coworkers on the perception of changes to their work environment. The quantitative results indicate an interaction between mental health and employment status on social participation, with employment reducing the negative impact of poorer mental health on social participation after adjusting for sociodemographic variables. Conclusions: Our results indicate changes necessary to integrate people with chronic conditions into working life, even under pandemic conditions. This includes the possibility of flexible working hours and compliance with hygiene measures at the workplace.

Long-term Consequences of COVID-19 and the Pandemic: Protocol for a Web-Based, Longitudinal Observational Study (DEFEAT).

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.