ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2022
"I feel like my body is broken": exploring the experiences of people living with long COVID.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 4 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 4 syntheses or guidelines pooled it, 42 citations in OpenAlex.
- Exploring the influence of long COVID upon self-identity: a systematic literature review.Archives of public health = Archives belges de sante publique · 2026Pooled it
- Patient and Professional Perspectives on Long COVID: A Systematic Literature Review and Meta-Synthesis.International journal of environmental research and public health · 2025Pooled it
- A systematic review to find link between past psychiatric history and development of long covid.BMC psychiatry · 2025Pooled it
- Psychosocial Aspects of the Lived Experience of Long COVID: A Systematic Review and Thematic Synthesis of Qualitative Studies.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- A systematic scoping review and conceptual analysis of new-onset fibromyalgia manifestations after non-hospitalized COVID-19: empirics, definitions, methodologies, pathophysiology, mapping of literature, and knowledge gaps.Journal of translational medicine · 2026Article
- The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments.EClinicalMedicine · 2026Review
- Article
- Long COVID symptoms and loneliness: findings from the World Trade Center Health Registry.BMC public health · 2025Article
- Scoping review of the emerging definition of long COVID: implications for future research and clinical practice.Revista de salud publica (Bogota, Colombia) · 2025Article
- Living With Persistent Respiratory Symptoms of Long COVID: Qualitative Study Among Brazilian Adults 12 Months After Acute Infection.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient Experience from a Pilot Study Implementing Software-Based Post-COVID Case Management in GP Practices-A Qualitative Process Evaluation.Healthcare (Basel, Switzerland) · 2025Article
- Profiling the persistent and episodic nature of long COVID symptoms and the impact on quality of life and functional status: a cohort observation study.Journal of global health · 2025Observational
- Barriers and facilitators of healthcare access for long COVID-19 patients in a universal healthcare system: qualitative evidence from Austria.International journal for equity in health · 2024Article
- Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies.BMJ open · 2024Article
- An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid.BMC public health · 2024Article
- Energy Management Education in Persons with Long COVID-Related Fatigue: Insights from Focus Group Results on Occupational Therapy Approach.Healthcare (Basel, Switzerland) · 2024Article
- Associations between physical activity, long COVID symptom intensity, and perceived health among individuals with long COVID.Frontiers in psychology · 2024Article
- "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.BMC health services research · 2023Article
- Animal models to study the neurological manifestations of the post-COVID-19 condition.Lab animal · 2023Review
- Recuperative herbal formula Jing Si maintains vasculature permeability balance, regulates inflammation and assuages concomitants of "Long-Covid".Biomedicine & pharmacotherapy = Biomedecine & pharmacotherapie · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeLong COVID, an illness affecting a subset of individuals after COVID-19, is distressing, poorly understood, and reduces quality of life. The objective of this sub-study was to better understand and explore individuals' experiences with long COVID and commonly reported symptoms, using qualitative data collected from open-ended survey responses.
methodsData were collected from adults living with long COVID who participated in a larger observational online survey. Participants had the option of answering seven open-ended items. Data from the open-ended items were analyzed following guidelines for reflective thematic analysis.
resultsFrom 213 participants who were included in the online survey, 169 participants who primarily self-identified as women (88.2%), aged 40-49 (33.1%), who had been experiencing long COVID symptoms for ≥ 6 months (74%) provided open-ended responses. Four overlapping and interconnected themes were identified: (1) Long COVID symptoms are numerous and wearing, (2) The effects of long COVID are pervasive, (3) Physical activity is difficult and, in some cases, not possible, and (4) Asking for help when few are listening, and little is working.
conclusionFindings reaffirm prior research, highlighting the complex nature of long COVID. Further, results show the ways individuals affected by the illness are negatively impacted and have had to alter their daily activities. Participants recounted the challenges faced when advocating for themselves, adapting to new limitations, and navigating healthcare systems. The varied relapsing-remitting symptoms, unknown prognosis, and deep sense of loss over one's prior identity suggest interventions are needed to support this population.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.