Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness

Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an "orphan" illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents of children with "orphan" illnesses requiring multidisciplinary care.

Participant-observations over 13 months (n=200) were combined with questionnaire data (n=55) to assess parental uncertainty at a multidisciplinary pediatric clinic.

Five unique types of uncertainty emerged from a grounded analysis (Glaser & Strauss, 1967), revealing 11 interrelated uncertainties these parents experience. Findings can help providers understand parents' uncertainty and assist in family-centered decision-making.