Relationship Between Parental Illness Uncertainty, Child Illness Uncertainty and Parental Distress in the Juvenile Rheumatic Diseases

Abstract

The present study attempted to examine the relationship between parent and child illness uncertainty, as well as the possible moderating variable of parental distress, in families with juvenile rheumatic diseases (JRD). Participants were 61(41 females; 20 males) children and adolescents between the ages of nine and 21 (M = 14.42; SD = 2.88) and their parents. Participants were recruited through the Pediatric Rheumatology Clinic at the University of Oklahoma Health Sciences Center in Oklahoma City, Oklahoma. The pediatric rheumatologist completed a Provider Questionnaire which included information regarding diagnosis duration, severity, and functional ability. Parents completed a background information questionnaire, the Brief Symptom Inventory (BSI, Derogatis & Melisaratos, 1983) and the Mishel Uncertainty in Illness Scale - Community Form (MUIS-C, Mishel & Braden, 1988). Children completed the Children's Uncertainty in Illness Scale (CUIS, Mullins & Hartman, 1995). Results of the present study showed parental illness uncertainty was not related to child illness uncertainty. Additionally, while parental distress was related to parent illness uncertainty, it was not related to child illness uncertainty. Importantly, physician-rated illness severity was associated with child illness uncertainty. These findings suggest the need to examine different models for child illness uncertainty and parent illness uncertainty in JRDs, as no relationship was found between the two. Additionally, because child illness uncertainty was related to illness severity, clinical interventions should focus on providing educational interventions for children, as well as parents, especially those children with severe JRDs.