Parent Stress for Patients Followed in a Multidisciplinary Spinal Defects Clinic

Objective: The primary aim of this study was to characterize parent-reported stress for parents of children being followed in a multidisciplinary spinal defects clinic. Method: Participants were drawn from clinical cases seen through a multidisciplinary outpatient spinal defects clinic between 2014 and 2017. Participants included 223 youth under 21 years old, diagnosed with spina bifida (SB) or a related neural tube defect, and their parents. Parent stress ratings were obtained for all participants as part of the standard care within the clinic using the Parental Stress Scale. Self-reported internalizing symptoms were measured for patients aged 12 and older (n = 44) with the 9-item Pediatric Health Questionnaire and the 7-item Generalized Anxiety Disorder scale. Results: Contrary to our prediction, we found low levels of parent and adolescent distress in this population. An important finding was that adolescent internalizing symptoms showed a moderate to large association with parent-reported stress and in fact, predicted parent stress better than did any demographic or health-related variable. Child age was also found to correlate with parent-reported stress, and parents of older children reported on average more stress than did parents of younger children. Conclusions: The current findings mainly highlight resilience in this population but do indicate that parent stress and child internalizing symptoms for children with SB are linked and are likely to be a target for clinical management, similar to the case for children without chronic health conditions.