Emotional and behavioral changes in parents of children affected by hemolytic-uremic syndrome associated with verocytotoxin-producing Escherichia coli: a qualitative analysis.

BACKGROUND

The 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.

OBJECTIVE

The authors investigated the effects of the critical-care hospitalization for this condition on well-being of patients' families.

METHOD: A 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.

RESULTS

Content analysis demonstrated that this cohort of parents experienced long-term emotional distress and substantive disruption to family and daily life.

DISCUSSION: These results corroborate anecdotal clinical observations. The authors suggest future research initiatives and best practices to reduce parental distress.