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

Schmachtenberg, Tim; Müller, Frank; Kranz, Jennifer; Dragaqina, Anita; Wegener, Greta; Königs, Gloria; Roder, Sascha

doi:10.3389/fpubh.2023.1155193

Cited by 19 publications

(27 citation statements)

References 35 publications

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“…All but two of the included studies were published in 2022 or 2023, yet the complexity of this question remains a concern. Studies defined Long COVID using clinical guidelines and criteria (such as those of the WHO and the UK National Institute for Health and Care Excellence),32 39 42 43 as well as on the basis of self-identification, noting the role of patient advocacy in the naming of Long COVID 33 35–37 40 41 44 45. The term Long COVID was generally used, though studies also acknowledged other labels such as ‘post-COVID syndrome’, ‘Post-Acute Sequelae of COVID-19’ and ‘long haulers’ 30 32–35 38–45.…”

Section: Resultsmentioning

confidence: 99%

“…Studies defined Long COVID using clinical guidelines and criteria (such as those of the WHO and the UK National Institute for Health and Care Excellence),32 39 42 43 as well as on the basis of self-identification, noting the role of patient advocacy in the naming of Long COVID 33 35–37 40 41 44 45. The term Long COVID was generally used, though studies also acknowledged other labels such as ‘post-COVID syndrome’, ‘Post-Acute Sequelae of COVID-19’ and ‘long haulers’ 30 32–35 38–45. One study explicitly distinguished terms, using ‘long COVID-19’ to describe ‘the lived patient experience’ and ‘post-COVID-19 syndrome’ to describe ‘the medically diagnosed condition’ 33…”

Section: Resultsmentioning

confidence: 99%

“…Other studies generated qualitative data via electronic health records (n=200)39 and open-ended responses from a larger observational online survey (n=169) 44. Studies used interpretive or descriptive thematic analysis methods, with half of the included studies developing sociologically informed theoretical frameworks 31 33 36 37 39–42…”

Section: Methodsmentioning

confidence: 99%

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Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

Harrison,

Rhodes,

Lancaster

2024

BMJ Open

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ObjectivesTo investigate the lived experiences of Long COVID.DesignCritical interpretive synthesis of qualitative research.Data sourcesPubMed and Web of Science databases were searched on 14 September 2023.Eligibility criteriaOriginal peer-reviewed qualitative studies describing the experiences of Long COVID were eligible for inclusion.Data extraction and synthesisWe used established qualitative synthesis methods to search, screen and manually code the included studies. Critical interpretation methods were used to analyse the data and develop synthetic constructs.Results68 articles were identified in the first phase of sampling, with 16 studies and 879 participants included in the final synthesis. The analysis of these studies was organised into three thematic constructions of Long COVID: (1) the illness, (2) the patient and (3) recovery. Long COVID was diversely characterised across study approaches, designs and findings but was underpinned by shared diagnostic logics, which shaped the identification and measurement of symptoms. The boundaries between different constitutions of Long COVID in qualitative accounts of illness experience were often imprecise. Slippages between different definitions of Long COVID had implications for patient experiences in relation to diagnosis, help-seeking and care, and expectations of recovery.ConclusionsLong COVID is a site of multiple and diverse qualitative interpretation. Accounts of lived experience emphasise the constitutions of illness, patienthood and recovery as situated and emergent. The ongoing context-based negotiation of Long COVID is a defining qualitative feature of the condition. Approaches to researching, diagnosing and developing health interventions must be as adaptive as the varieties of Long COVID lived experience.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

Harrison,

Rhodes,

Lancaster

2024

BMJ Open

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“…The study is part of the multicenter research project "DEFEnse Against COVID-19 STudy -Looking forward" (DEFEAT Corona) [26], which examines the phenomenon of long COVID from both biomedical and social science perspectives. In addition to a longitudinal cohort study of people with long COVID, one-on-one interviews on social participation have been carried out [27].…”

Section: Methodsmentioning

confidence: 99%

“…The moderation guideline for the focus groups was based on methodological literature [28], [30], [31] and the ndings of previously conducted one-on-one interviews on social participation with people with long COVID [27]. The discussion topics were de ned and the moderators' input was kept brief and open-ended [28], [30]- [32].…”

Section: Development Of Moderation Guidelinementioning

confidence: 99%

"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

Schmachtenberg,

Königs,

Dragaqina

et al. 2023

Preprint

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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).

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The Impact of Long COVID on Employment and Well-Being: A Qualitative Study of Patient Perspectives

MacEwan,

Rahurkar,

Tarver

et al. 2024

J GEN INTERN MED

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Background Exploring the experiences of Long COVID patients who face challenges with employment may inform improvements in how healthcare systems can provide holistic care for this patient population. Objective Understand perspectives about the impact of Long COVID on employment and well-being among patients seeking healthcare for Long COVID. Design Qualitative study involving one-on-one interviews. Participants Eligible participants were 18 years of age or older, spoke English, self-reported as doing well in daily life before having COVID-19, and reported that COVID-19 was still having a significant impact on their life three or more months following an acute infection. Approach Participants were recruited from a post-COVID recovery clinic at an academic medical center. Interviews were conducted from August to September 2022. Key Results Among all participants (N = 21), most described that they were not able to work at a capacity equivalent to their norm pre-COVID-19. For those who continued working after their COVID-19 infection, the effort and energy required for work left little capacity to participate in other life activities and made it difficult to attend recommended healthcare appointments. Participants reported financial impacts of changes in employment including loss of income and changes in insurance, which were compounded by high healthcare costs. Changes in employment resulted in emotional repercussions including feelings of loss of self-identity and fear of judgement at work. Participants discussed issues surrounding access to strategies to address challenges posed by the impact of Long COVID on employment, including strategies learned from healthcare providers to cope with Long COVID symptoms at work and efforts to seek disability benefits or workplace accommodations. Conclusions Patients with Long COVID may face significant challenges due to changes in their ability to work. Healthcare providers can support these patients by connecting them to financial assistance resources, facilitating appropriate mental health treatment, and expediting workplace accommodation requests.

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

Cited by 19 publications

References 35 publications

Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

"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

The Impact of Long COVID on Employment and Well-Being: A Qualitative Study of Patient Perspectives

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