Emotional and Behavioral Changes in Parents of Children Affected by Hemolytic-Uremic Syndrome Associated With Verocytotoxin-Producing Escherichia Coli: A Qualitative Analysis

BackgroundThe long-term clinical outcome for children affected by hemolytic uremic syndrome associated with verocytotoxin-producing Escherichia coli (VTEC–HUS) is well documented, but the parental experience is not.ObjectiveThe authors investigated the effects of the critical-care hospitalization for this condition on well-being of patients’ families.MethodA group of 30 parents completed a free-response format survey when their child presented to the hospital; 19 of this cohort completed a 1-year follow-up.ResultsContent analysis demonstrated that this cohort of parents experienced long-term emotional distress and substantive disruption to family and daily life.DiscussionThese results corroborate anecdotal clinical observations. The authors suggest future research initiatives and best practices to reduce parental distress.