Improving the quality of life in post-COVID-19-patients: A mixed-methods investigation toward self-management support for post-COVID-19 syndrome

Six years after the emergence of COVID-19, its impact persists, especially for patients with post-COVID-19 syndrome (commonly known as long COVID). Post-COVID-19 syndrome is a complex disease occurring in 1 in 8 individuals after SARS-CoV-2 infection, characterised by debilitating, persistent symptoms. This severely limits daily life, physically, mentally, and socially, reducing the health-related quality of life. Currently, no curative treatment exists and waiting lists for specialised healthcare are long, leaving patients to self-manage their illness. This thesis explored the impact of post-COVID-19 syndrome on daily life, aiming to 1) deepen understanding of the syndrome and 2) contribute to self-management support. The results reveal that patients who were hospitalised with COVID-19 may experience substantially impaired physical and mental quality of life, although recovery trajectories differ. This may be exacerbated by their negative illness beliefs: struggles with sense-making, uncertainty, limited illness and recovery control, and negative emotions. Furthermore, symptoms fluctuate throughout the day, influenced by daily activities and positive and negative affect. Positive affect seems to improve self-regulation and symptom severity, making it a suitable target mechanism for intervention. Finally, two self-management support options were investigated. A technological symptom-oriented intervention via just-in-time adaptive intervention was deemed (currently) infeasible due to the complexity of post-COVID-19 symptoms. However, a positive psychology intervention helped patients through personal strengths and positive emotions to self-regulate mental well-being and may alleviate symptom burden. Although not suitable for everyone, such psychosocial interventions offer potential for patients awaiting clinical treatment. This thesis underscores the importance of a biopsychosocial approach to better understand post-COVID-19 syndrome and self-regulation needs, and argues to support patients in sense-making and mental well-being.