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. Implications for Impact Statement The current study highlights resilience in parents of children with a neural tube defect but does indicate that parent stress and child internalizing symptoms for children with a neural tube defect are linked and are likely to be a target of clinical management in a subset of this population. Additionally, it contributes to research investigating the efficacy of psychosocial screening tools in medical clinics and the benefits of multidisciplinary care for youth with neural tube defect.