Children and adolescents with post-COVID-19 condition: A qualitative study on the experiences and satisfaction with treatment in a model project in Bavaria (Post-COVID Kids Bavaria)

Abstract

Against the background of inadequate healthcare provision for children and adolescents with post-COVID-19 syndrome (PCS), a model project was initiated in Bavaria (PoCoKiBa: Post-COVID Kids Bavaria), offering specialized diagnostics and care. The aim of this study was to explore and describe the experiences and satisfaction of children and adolescents with PCS, as well as their parents, with the healthcare provided in the model project. From October to December 2022, seven focus group discussions were conducted via video conference or in person with a total of 32 participants (19 children/adolescents, twelve mothers, one father). These represented 28 children and adolescents affected by PCS (aged 7 to 17 years). The focus group discussions were recorded, transcribed and analysed using qualitative content analysis. Study participants talked about their experiences with the care they received within and beyond the model project, continuity of care, communication between doctors and patients, patient information, and the accompanying study. At the sites of the model project, patients found physicians who spent more time with their patients and took them seriously. Following diagnosis, some patients have benefited from recommendations for therapeutic services or everyday behaviours, while others complained about a lack of treatment suggestions or support for dealing with PCS in their everyday life. The experiences of study participants with the medical care of their PCS symptoms within or beyond the model project mirror the well-known challenges of healthcare provision. There is considerable room for improvement in the care of children and adolescents with PCS, particularly in the organization of the complex diagnostic process, which involves several organ systems, and in the provision of targeted information to patients and families affected. The supply of healthcare services, as established and offered in the PoCoKiBa model project, is crucial for families with a child affected by PCS, since it can offer expertise in diagnosis and treatment that is currently not available in routine health care.