Improving the quality of life in postCOVID-19-patients - A mixed-methods investigation towards self-management support for post-COVID-19 syndrome
Gerko Schaap is a PhD student in the Department of Psychology, Health & Technology. Promotors are prof.dr. H.E. Vonkeman and dr. C. Bode from the Faculty of Behavioural, Management and Social Sciences.
COVID-19 has had an enormous impact on the world and the lives of many people. Now, almost six years after its emergence, people generally tend to forget it still exists. However, a substantial number of patients still suffer daily from lasting effects of the disease, often already for years. Just in the Netherlands, almost half a million people have post-COVID-19 syndrome, also known as post COVID or long COVID. Post COVID is a complex disease that may occur in 1 in 8 people after a SARS-CoV-2 infection. It is associated with numerous debilitating symptoms, such as persistent fatigue and exertion, breathlessness, pain, cognitive problems, and depressive and anxiety symptoms. Hence, patients experience serious limitations in the physical, mental, and social aspects of their daily life and substantially reduced health-related quality of life (i.e. physical and mental functioning and well-being). Although treatment options for post COVID exist, so far there is no cure, and waiting lists for specialistic healthcare are long. Patients instead need to self-manage their illness, and may need help with that. This thesis investigated the impact of post COVID on the daily life of patients in a holistic, in-depth way. The research aims were 1) to increase the understanding of post-COVID-19 syndrome and 2) to contribute to support options for the self-management of the syndrome.
Following an outline of the background and research aims in Chapter 1, this thesis was split up in two parts. In Part I, we investigated the quality of life and post COVID illness and symptom experiences in daily life. Here, we found that the health-related quality of life over the period of one year differ substantially in people who were hospitalised with COVID-19. Although many recover fully or keep improving, many others (almost half of the sampled patients) continue to experience impaired physical and mental quality of life and persistent post COVID symptoms. Interviewed patients described these symptoms and how they try to self-regulate their illness. We found that patients struggle to make sense of post COVID, experience uncertainty and have little control over their recovery and over the illness. Furthermore, patients were asked to track their symptoms, affect (i.e. mood and emotions) and daily life activities six times a day for two weeks. We observed how symptoms tend to differ between patients and can fluctuate over the day and throughout the week within patients. These fluctuations may come from daily life activities, but are also associated with affect. Specifically, feeling well (positive affect) may reduce the severity of symptoms 2 hours later, while feeling bad (negative affect) may increase them. These findings combined show how post COVID is associated with many psychosocial aspects – not just physical and biological factors. This provides a base for support options in self-management, specifically in self-regulation.
In Part II of this thesis, we explored two potential support options for self-management: symptom-oriented and strength-based. First, we presented a literature review investigating to what extent we can employ mobile technological interventions (e.g. smartphone applications) to support post COVID symptom management at the right moment – so-called ‘just-in-time adaptive intervention’. This type of intervention is promising, but due to the complexity of post COVID, much more research and development is necessary before it is suitable. Secondly, we created a strength-based intervention called ‘Positiviteit bij post COVID’, which aims to support patients in self-regulating their mental well-being through working on personal strengths and positive emotions and thoughts. Patients found this intervention acceptable, useful and helpful to promote self-regulation skills and positive affect. However, not everyone finds these types of psychosocial intervention suitable for post COVID or expressed (other) personal reluctance. Nevertheless, this type of intervention may be used by patients on the waiting list before clinical treatment, especially by those with low mental well-being.
Finally, the thesis concludes with a general discussion of the main findings and a reflection on what these imply for developing technological support in self-regulation in post-COVID patients. Future research is still needed, for example to determine the effectiveness of ‘Positiviteit bij post COVID’. This thesis provides further evidence for researchers and clinicians to consider post COVID from a biopsychosocial perspective to better understand the syndrome and the role of self-regulation in patients’ quality of life. In practice, this means that patients should be supported in their struggles with sense-making of the illness and in their mental well-being regardless of psychological symptoms.
