The main statements of the participants presented in this chapter are substantiated with original quotes from the focus groups. Discussions were forward translated into English. "F" at the end of the quotes and in the tables stands for focus group and "P" for participants.
Participant Cohort
39 individuals responded to recruitment efforts, of which 35 met the inclusion criteria. From these 35 individuals, 28 were randomly selected and invited to the focus group. Three participants were not present on the day of the data collection without prior cancellation. Two other individuals canceled on short notice, one of them due to health problems. A total of 23 participants eventually attended the focus groups.
The participants were between 19 and 63 years old (mean: 41.6 years), 16 were female (70%), and seven male (30%). With the exception of one female student, one male student, and one person who received a disability pension, all participants were employed. Table 2 shows the selected socio-demographic characteristics of the participants (sorted chronologically according to the focus group dates and the order of speakers).
Table 2
Overview of sociodemographic characteristics of participants
Focus group
|
Participant
|
Gender
|
Age
|
Occupation
|
Interview date (setting)
|
F1
|
P1
|
Male
|
52 years
|
Banker
|
06/22/2022 (Göttingen)
|
P2
|
Male
|
51 years
|
Hygiene manager
|
06/22/2022 (Göttingen)
|
P3
|
Female
|
50 years
|
Nurse
|
06/22/2022 (Göttingen)
|
P4
|
Female
|
42 years
|
Lab technician
|
06/22/2022 (Göttingen)
|
P5
|
Male
|
21 years
|
College student
|
06/22/2022 (Göttingen)
|
F2
|
P1
|
Female
|
No information
|
Office clerk
|
06/22/2022 (Göttingen)
|
P2
|
Female
|
26 years
|
Preschool teacher and student
|
06/22/2022 (Göttingen)
|
P3
|
Female
|
23 years
|
Lab technician
|
06/22/2022 (Göttingen)
|
P4
|
Female
|
19 years
|
Student
|
06/22/2022 (Göttingen)
|
P5
|
Female
|
62 years
|
Board member of a company
|
06/22/2022 (Göttingen)
|
F3
|
P1
|
Female
|
31 years
|
Social worker
|
07/06/2022 (Hannover)
|
P2
|
Female
|
50 years
|
Journalist
|
07/06/2022 (Hannover)
|
P3
|
Male
|
53 years
|
Cook
|
07/06/2022 (Hannover)
|
P4
|
Female
|
51 years
|
Medical assistant
|
07/06/2022 (Hannover)
|
P5
|
Female
|
39 years
|
Employee in geriatric care
|
07/06/2022 (Hannover)
|
P6
|
Male
|
63 years
|
Driver
|
07/06/2022 (Hannover)
|
F4
|
P1
|
Male
|
54 years
|
Engineer
|
07/06/2022 (Hannover)
|
P2
|
Female
|
32 years
|
Beautician
|
07/06/2022 (Hannover)
|
P3
|
Female
|
51 years
|
Teacher
|
07/06/2022 (Hannover)
|
P4
|
Male
|
55 years
|
Police medical inspector
|
07/06/2022 (Hannover)
|
P5
|
Female
|
28 years
|
Paramedic
|
07/06/2022 (Hannover)
|
P6
|
Female
|
30 years
|
Preschool teacher
|
07/06/2022 (Hannover)
|
P7
|
Female
|
31 years
|
Disability beneficiary (former office manager)
|
07/06/2022 (Hannover)
|
The focus groups lasted between 60 and 80 minutes (mean: 69 minutes). Analysis of the content presented identified themes in five categories: (1) positive and (2) negative experiences with medical care, (3) experience of therapies, (4) perceptions of challenges and barriers to seeking services in the German healthcare system, and (5) suggestions for supportive measures.
Table 3 shows the complaint profile of the participants at the time of the focus group, current and past care contacts with physicians and psychologists, and current and past therapeutic measures. Six participants had solely encountered their general practitioners (GP) for their long COVID complaints, two participants reported only consulting specialists, and eleven participants visited both GPs and specialists. One person stated that he had not sought medical attention due to long COVID-related health problems. Three persons did not provide any information in this regard. In total, 19 of the 23 participants had personal experiences with ambulatory medical providers for their long COVID complaints.
Table 3
Overview of reported (long COVID) complaints, (physician) care settings, and (implemented) therapeutic measures
Participants
|
Reported complaints
|
Medical
care (by)
|
Therapeutic
measures
|
F1 – P1
|
Reduced resilience, erectile dysfunction, depressed mood, sleep disturbances, personality change
|
GP, pulmonologist, cardiologist
|
Psychosomatic rehabilitation
|
F1 – P2
|
-*
|
GP, pulmonologist, gastroenterologist
|
Physiotherapy, respiratory therapy, build-up of intestinal flora, physical activity (walks, cycling), regeneration (rest periods).
|
F1 – P3
|
Shortness of breath, reduced endurance, water retention in the legs
|
Pulmonologist, cardiologist
|
Rehabilitation
|
F1 – P4
|
Impaired lung function
|
-*
|
Respiratory therapy
|
F1 – P5
|
Impaired lung function
|
GP, pulmonologist
|
-*
|
F2 – P1
|
Fatigue, dizziness, headache, concentration problems
|
GP, pulmonologist
|
-*
|
F2 – P2
|
Nerve pain, insensitivity (in the legs), hair loss
|
GP, cardiologist
|
Drug treatment (ibuprofen)
|
F2 – P3
|
Concentration problems, memory problems, reduced physical performance
|
No medical consultation
|
-*
|
F2 – P4
|
Heart problems, hair loss
|
GP, pneumologist, internist
|
Drug treatment ("asthma spray"), physiotherapy, rehabilitation sports
|
F2 – P5
|
Reduced physical performance
|
GP
|
-*
|
F3 – P1
|
Fatigue, depressed mood
|
GP
|
-*
|
F3 – P2
|
Fatigue, shortness of breath, muscle pain, concentration problems
|
-*
|
-*
|
F3 – P3
|
Pulmonary problems, nerve pain, loss of energy
|
GP, cardiologist, pulmonologist, sports doctor
|
Therapeutically guided fitness training, respiratory training, rehabilitation (pulmonary training, sports therapy), intake of vitamins, drug treatment (temporary intake of painkillers, drugs
to regulate the heart rate)
|
F3 – P4
|
Fatigue, rheumatic complaints, concentration problems
|
GP, rheumatologist
|
Drug treatment (cortisone)
|
F3 – P5
|
Loss of energy, depressed mood
|
GP, cardiologist, psychologist
|
Rehabilitation
|
F3 – P6
|
Fatigue, impaired sense of smell
|
GP, orthopedist, rheumatologist, pulmonologist
|
Respiratory training, rehabilitation, training-therapeutic rehabilitation aftercare
|
F4 – P1
|
Fatigue, headache, concentration problems, memory disorders
|
GP
|
Occupational therapy, physiotherapy, rehabilitation
|
F4 – P2
|
-*
|
GP, physician from a coagulation outpatient clinic
|
Group meetings supported by psychotherapists, neurofeedback
|
F4 – P3
|
Fatigue, muscle pain, nausea, increase in pulse, concentration problems, word-finding disorders, impaired memory
|
GP
|
-*
|
F4 – P4
|
Impairment of short-term memory, mood swings
|
GP
|
Group meetings supported by psychotherapists, neurofeedback
|
F4 – P5
|
Fatigue, headache, histaminosis
|
-*
|
Occupational therapy, physical therapy,
sports therapy, cognitive performance training, outpatient rehabilitation
|
F4 – P6
|
-*
|
GP
|
-*
|
F4 – P7
|
Noise sensitivity
|
Physician from rehabilitation medicine
|
Occupational therapy, physiotherapy
|
*= No information provided |
Positive experiences with medical care
A total of eight participants perceived that their GPs took their long COVID complaints seriously. They experienced that their GPs listened, took interest in their situation, and addressed their problems. "[My GP] definitely takes it seriously" (F2, P1). "My GP was interested there" (F1, P1). Five participants reported receiving further support from their GPs. For five participants, this was in the form of referrals to specialists (internal medicine, cardiology, neurology, pulmonology). "My GP [...] referred me to the [pulmonologist]. There I was also helped a little bit" (F2, P4). "My doctor [...] sent me straight to the cardiologist" (F3, P3). Two participants each received therapy recommendations and further information about long COVID from their GPs. In particular, the initiative and proactive communication of individual GPs gave the participants a good feeling. "Thank God I have a GP who also has little experience in this area, but who supports me one hundred percent. She [...] calls you and does and does. I'm lucky to have here." (F4, P1)
One participant expressed complete satisfaction with both the support provided by his GP and the extensive specialist examinations. "I'm completely examined, by the pulmonary specialist, by the sports doctor. Then I just get tested to see how my performance is" (F3, P3). The immediate acceptance of his complaints by the treating GPs and specialists, their sensitivity to long COVID signs, and the timely examinations and treatment efforts have provided confidence and security for the participant. "All the doctors I've been to have taken me seriously right away and said 'no, those are the signs of long or post COVID.' That's when I was lucky that my GP did a lot, tried a lot" (F3, P3).
Negative experiences with medical care
While the relation between positive and negative experiences was relatively balanced regarding the acceptance of participants' long COVID complaints by GPs (seven people felt that they were not taken seriously in this regard), the negative experiences predominated in the other aspects of medical care discussed. Several respondents described feeling that their GPs did not emphasize their situation and could not comprehend their perception of their complaints, which eventually even worsened their well-being.
"I then hear from my doctor, so it came across as 'pull yourself together a bit and go for a bike ride every now and then and start doing sport and then it will be fine'. And when I told him about this crash and he told me what he understood by a crash, I left the practice, and tears came to my eyes again. And I thought 'he doesn't know how I feel at all. He doesn't know what's happening to my body at all'. I also felt so lost and so alone because the understanding he has of the disease I have is completely different than what I experience." (F4, P3)
Eight participants reported that they received no supportive gestures or understanding at all from their GPs. They received neither advice on treatment options, possible next diagnostic steps, and measures for handling the complaints, nor advice on how to cope in their situations with their everyday lives. Several participants pointed out that their GPs advised them to wait and be patient, as the symptoms would go away on their own. "And that was also the tenor again for three months, that she [the GP] said 'wait and see'" (F3, P1). Two respondents experienced a reduction of their complaints to psychological or psychosomatic symptom patterns and a lack of acceptance of their suffering due to their young age. "And then there are doctors who label you directly as psychosomatic [...] and say 'You are such a young woman'" (F4, P7). The lack of (external) visibility of the condition was perceived as a possible obstacle to the recognition and acceptance by their physicians. "A doctor once said to me: 'I can't see your [condition] at all'" (F4, P7).
Due to the lack of acceptance by physicians, participants conducted extensive research to build up disease-management skills and to compensate (at least partially) for the lack of professional support. Many participants stated that they had made great efforts to convince their GPs that their symptoms required treatment. Some participants reported experiencing rejection from their GPs even when they came to the practice well-prepared, brought examination and lab results indicating a health problem, and made treatment suggestions. "You already work everything out so that you can actually evaluate it medically well. He [the GP] took a quick look at my first [blood] test results [with high inflammation values] [...] and that was it. For him, that was 'please don't use the C-word [Corona]'" (F4, P4). Some respondents experienced that their GPs advised them against certain therapeutic measures such as rehabilitation or consulting specialists for further diagnostics. In some cases, this led to delayed care.
"When he [the GP] got the report from the pulmonary specialist, [...] he said to me 'Physiotherapy? Do you think you need that? You're doing sports. Rehabilitation? I'm not gonna do the paperwork for your rehabilitation. And then I say 'Why? 'I don't think we're there yet'. [...] 'Well, I wouldn't do all this rehabilitation stress.'" (F1, P2)
"I hadn't consulted any specialists yet because my GP didn't think I needed them." (F2, P2)
Overall, 14 participants concluded that consultation with GPs and specialists was not helpful in the context of their long COVID symptoms. Consequently, many respondents felt they had been left alone and that they had to cope with their situation without any support from their GPs. "There is no one to help you with it. You have to do everything yourself" (F3, P6). The experiences of rejection, in combination with the reduced energy resources due to fatigue, led several participants to stop contacting their GPs with their long COVID complaints. "My GP, I don't need to go at all, I only go because I need a sick note further. He says bluntly 'I can't help you'" (F2, P2). Furthermore, some individuals with long COVID lost trust in the overall German healthcare system and the service they provide.
"The trust, the credibility to even go there or [...] energy, I need that for myself at the moment. But by having to work things out or what else can you think of, where can you take him by the hand again? Your doctor. That's actually where we are right now in this situation. [...] When you have these experiences, you really wonder about Germany, 21st century, medicine? What other countries want to have so much, where we are. If we really knock and say 'hello, help me'. From a basic point of view, not really" (F4, P4).
Experience of therapies
Participants mentioned several therapeutic interventions that they perceived as helpful in terms of their symptoms, well-being, and coping with daily life activities. Five respondents were satisfied with their specialist therapies. Three participants reported that they experienced occupational therapy and physical therapy treatments as helpful to maintain physical and cognitive abilities. "I've done quite a bit of occupational and physical therapy tailored just to me. That already does a lot for me to stay in shape as much as I can. If I wouldn't have that." (F4, P1). Additionally, three participants found it supportive to take part in group meetings supported by psychotherapists, in which they could share their experiences of handling long COVID with other patients. Participants described these groups as emotionally uplifting, but also helpful for the recommendations that were shared for alleviating symptoms (e.g., by adjusting diet, exercise, and sleep habits) and managing everyday activities.
"The coping group, [...] that I get there with tips with diet, exercise, sleep and everything once a week. [...] This weekly exchange alone. We are there nine in the group, also once there to know 'what have you already done?', 'what has helped you there something?'. The psychotherapist, [...] that she then directs us a little bit correctly. [...] That gave us a lot, built us up. [...] You can try out a lot of things that you wouldn't have thought of yourself. That has been very helpful" (F4, P4).
Individual participants perceived cognitive training in a neuropsychological setting, neurofeedback therapy, respiratory training, training-therapeutic rehabilitation aftercare (T-RENA), and physician-guided vitamin therapy as helpful. "I've been doing regular exercise since November, first done in the cure, and was able to continue this fitness training, which is called T-RENA. That goes over the pension fund [...]. There I go twice a week and do sport there. And it's good for me [...]. I do everything, cycling, so hand cycling 10 minutes" (F3, P6). "A lot with vitamins, not necessarily painkillers" (F3, P3).
One respondent also reported that, as part of a sports study, he received individual training plans and a heart rate watch with an associated app for monitoring his heart rate. In this way, his thresholds of overexertion were determined and he was able to adjust his activities accordingly. The watch provided the participant with immediate feedback regarding the degree of stress of certain activities and alerted him by an acoustic signal if his heart rate exceeded a limit. "My heart rate must be no more than 115, I can't go over, because otherwise, it's too stressful. There's climbing stairs, ten minutes, there's walking for half an hour, [...] cycling for half an hour, but very slowly, and as soon as I'm over it, the watch beeps (F3, P3). The data stored in the app was regularly evaluated and the participant's activities were adjusted based on this data and the results of specialist examinations and performance tests. Furthermore, the respondent participated in a sports group to which he was referred by providers at a specialized long COVID outpatient clinic. "Yes, I had been here on this big examination day [of the long COVID outpatient clinic of the Hannover Medical School] and the colleague says, there is also a sports group here and whether that would be something for me. Then I went straight there" (F3, P3). As a result of utilizing these complementary medicine therapies, the patient experienced relief from his complaints and an improvement in his well-being.
In contrast, four participants were not satisfied with the therapeutic measures prescribed by their physicians. Two participants reported receiving drug treatment. While one person received an asthma spray, one respondent was prescribed a painkiller. "I was told 'there is nothing. Take an ibuprofen.' But I can't take ibuprofen every day either. That goes on my stomach at some point" (F2, P2). For two participants, the physician's recommendations were limited to rest and exercise, leaving them perplexed and in despair. "'What should I do?' 'Head thing and rest and go for a walk and ride a bike'" (F1, P2).
Perceptions of challenges and barriers to seeking services in the German healthcare system
14 of the 23 respondents criticized certain aspects, structures, or institutions in the German healthcare system. Ten participants noted a general lack of knowledge, treatment options, and too few approaches to develop such care concepts. According to the participants, lack of knowledge severely limited the ability of GPs and specialists to act. "There are no tools that doctors can take in their hands and say 'this is what I'm giving you and this is what I'm helping you with'" (F3, P2). Five participants criticized the waiting times of several months for specialist appointments such as pulmonologists or cardiologists and saw this as an access barrier to receive the care they need. "With the cardiologist, you call 'come in half a year'. [...] I find that alarming in Germany. [...] If you really have the demand and then call somewhere and they say 'in half a year', the next one says 'this year it will be nothing at all'" (F3, P3).
Four respondents referred to a lack of specialized long COVID clinics. Two of them perceived the long wait times for long COVID consultations as impairing their care and recovery. "I reached out [to two] [...] long COVID outpatient clinics [...]. [...] There was stalling [...], I say 'When am I going to get an appointment?' 'You'll have to wait another year for that'. I say, 'When I'm dead, I don't need an appointment anymore'" (F3, P6). Three respondents perceived bureaucratic hurdles (e.g., clinics asked for test reports in advance, long processing times for rehabilitation applications) and lack of contact persons (at authorities and providers) as access barriers to care services such as rehabilitation measures and long COVID consultations. "I noticed it with rehabilitation, the applications you have to fill out, it's immense. Getting that application in the first place. [...] That also took forever and you also have questions about what you have to fill out. There, too, you didn't have a contact person. It was just so much bureaucracy [...]. And I think many people shy away from that" (F3, P3).
Three participants criticized the design and poor information transfer regarding the preparation, conduct, and follow-up of scientific studies in the field of health research. As a result, these individuals felt that, as affected persons, they often did not benefit from the potential added values of such studies, or only to a limited extent.
"The information flow [in studies] works poorly" (F3, P6). "It was about rheumatism [...]. Then I had filled out all the questions and then I think it said at the beginning, at the bottom, I could then make an appointment, because somehow with a rheumatism practice [...] is cooperated, but it came somehow not. [...] I just couldn't specify an appointment anywhere, I thought that was a pity. And then I would have had to fill out all the questions again. That is somehow a bit strangely presented in any case. [...] I only became aware of the group here through a friend" (F3, P5).
Respondents with inpatient or day-care rehabilitation experience saw a further problem in the lack of orientation of rehabilitation clinics and programs toward long COVID. In this context, one person used an ironic remark to criticize the lack of flexibility of the German Pension Insurance concerning timely adaptation to crisis situations such as pandemics.
"At the point [treatment of long COVID], in my eyes, the rehabilitation structure is not set up for that either. If I do not have just quite clearly pneumatological problems at the lung or something, then I am sorted by default and [...] treated psychosomatically, for example [...]. I don't expect that from the pension insurance, flexibility and temporal speed, to adjust to things within two years, but I believe that there would also be a need for it." (F1, P1)
Suggestions for supportive measures
The participants not only shared their experiences with the relevant healthcare institutions and actors but also discussed possible approaches to solving the described healthcare problems. Seven respondents expressed the wish that one-stop shops in the health sector and the population be specifically sensitized to the issue of long COVID through measures such as information campaigns by the federal government. This should include a focus on confronting the common misconceptions in parts of society and the healthcare system that persistent COVID complaints have psychological causes or primarily affect older adults.
"I would like to see maybe a campaign like that from the federal government about it [long COVID]" (F1, P5). "I also find the idea with this campaign very good and what I would also find important would be that people are also told plainly and clearly, because what you really only hear is 'Are you sure that you really still have organic problems and that this is not only the psyche?' [...] Of course, at some point, it goes to the psyche, but there are organic problems (F1, P4)."
Five participants emphasized the need to increase research activities and government investment regarding the treatment of long COVID. "That maybe this [hyperbaric oxygen therapy] can be offered in a setting of higher-paying trials, that more is tried" (F4, P5). Likewise, five individuals wished for an expansion of existing therapeutic services such as rehabilitation sports or group therapy. In addition, participants clearly stated that access to support services and studies should be made easier. "That also, for example, physiotherapy prescriptions are not limited due to any budget things and that also everyone has access" (F4, P7). Moreover, participants highlighted the need for better networking and communication between the treating physicians. To enable integrated healthcare, the respondents recommended the establishment of one-stop shops where the results of different specialist examinations are brought together by a medical specialist acting as a fixed contact person. The participants highlighted the concept of the long COVID outpatient clinic of the Hannover Medical School and the establishment of specialist centers focusing on long COVID.
"The way it is at the Hannover Medical School. That you have your GP at home and he controls it, all the examination things [...], but then you say, I can go to the cardiologist tomorrow or whatever, and that you have the one contact person." (F3, P3)
"That would be the smart thing, if you had such a center, really integrative and the psychologist is there, the rheumatologist is there and you could do everything in this center. And there are also people who know about this disease and seriously deal with it and also combine their knowledge." (F3, P2)