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.


METHODS
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.


CONCLUSIONS
These results corroborate anecdotal clinical observations. The authors suggest future research initiatives and best practices to reduce parental distress.
Pollock
Kevin G J
KG
Health Protection Scotland, Clifton House, Clifton Place, Glasgow G37LN, Scotland. Kevin.Pollock@hps.scot.nhs.uk
Duncan
Elaine
E
Cowden
John M
JM
D000223:Adaptation, Psychological; D000275:Adjustment Disorders / Q000175:diagnosis / Q000523:psychology; D000293:Adolescent; D000342:Affective Symptoms / Q000175:diagnosis / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003289:Convalescence; D003422:Critical Care / Q000523:psychology; D004644:Emotions; D004927:Escherichia coli Infections / Q000523:psychology*; D005195:Family Relations; D005260:Female; D006463:Hemolytic-Uremic Syndrome / Q000523:psychology*; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D011446:Prospective Studies; D012606:Scotland; D054323:Shiga-Toxigenic Escherichia coli; D011795:Surveys and Questionnaires