Table 1.

Summary of themes from qualitative analysis.

Theme		n
Severity of illness & Symptomatology	Descriptions of the debilitating nature of symptoms, several of which are outside of those commonly understood	263
Difficulty surrounding the diagnostic process & not being believed	Descriptions of feeling as though they were not believed by medical professionals, or that their illness experiences were psychiatric in nature despite evidence of infection	146
Impact on family & social connections	Comments related to being isolated from their friends/family, unable to enjoy activities of life as they were prior to illness onset	67
Poor school functioning	Descriptions of difficulty completing schoolwork, having to delay course completion, and associated stress as a result of these circumstances	60
Positive coping	Any mention of helpful or positive occurrences during COVID-19 illness	55
Subsequent positive medical experiences	Descriptions of experiences in which the child/family had better interactions with the medical system	46
Mental Health	Mentions of impact of COVID-19 on mental health symptomatology	40
Knowledge of medical field & healthcare experience	Mentions that a family member, often a caregiver, was a healthcare professional or had increased knowledge of the medical field, which directly impacted advocacy efforts and increased understanding of what was happening	31
Kappa	0.9002