Mara Linnea König, Maja Pawellek, Chiara Rathgeb, Uta Behrends, Michael Kabesch, Christian Apfelbacher, Susanne Brandstetter
The participants reported that the model project had facilitated access to diagnosis and specialized healthcare for CYP with PCS. However, need for healthcare improvement was perceived on different levels, among others regarding access to healthcare. The issues raised by CYP/ their parents partly differed from those of healthcare professionals; sometimes they complemented each other. Some workshops yielded solutions that should be taken into account when planning future care for CYP affected by PCS.
BACKGROUND: The model project "Post-COVID Kids Bavaria" aimed to provide comprehensive healthcare care for children and young people (CYP) with post-COVID-19 syndrome (PCS). The multi-method evaluation included stakeholder workshops with CYP and their parents as well as healthcare providers.
OBJECTIVE: The objective of this study was to collaboratively evaluate the care provided in the model project and to identify potential areas for improving care.
METHODS: Three online workshops were conducted, each lasting two hours, with a total of 26 participants (3 CYP, 10 parents, 13 healthcare providers). The workshops followed the methodology of "future workshops", including distinct phases: preparation, critique, fantasy and implementation. Results were documented using digital padlets and detailed written minutes. The data were analyzed using qualitative content analysis.
RESULTS: CYP with PCS, their parents and healthcare professionals expressed needs for improvement regarding the scope of the diagnostic process, knowledge of healthcare professionals, patient information and communication, access to and continuity of healthcare, effective therapies, social participation and education as well as financial, legal and structural conditions. CYP and their parents additionally pointed to the importance of centralized healthcare coordination. Healthcare professionals addressed potential improvements through digital solutions and increased cooperation between the outpatient and inpatient sectors, as well as between stakeholders in education and medicine. Specific ideas were developed concerning access to healthcare (e. g., map of healthcare services), continuity of healthcare (e. g. training and certification), quality of healthcare and patient/layperson education (information materials, also on complex topics).
CONCLUSION: The participants reported that the model project had facilitated access to diagnosis and specialized healthcare for CYP with PCS. However, need for healthcare improvement was perceived on different levels, among others regarding access to healthcare. The issues raised by CYP/ their parents partly differed from those of healthcare professionals; sometimes they complemented each other. Some workshops yielded solutions that should be taken into account when planning future care for CYP affected by PCS.