Self-Management in Youth With Spina Bifida: Associations With Parent Factors in the Context of a Summer Camp Intervention.

This article investigates the cross-sectional and longitudinal associations between parent factors and self-management in youth with spina bifida (SB), focusing on condition-related responsibility and mastery. Using data from 89 camper–parent dyads participating in a summer camp intervention, the study found that higher parental expectations for their child's future were consistently associated with greater youth responsibility and mastery of SB-related tasks, particularly among older youth. Conversely, greater parental perceptions of child vulnerability were linked to slower increases in youth responsibility over time. Parent adjustment factors such as distress and parenting stress showed no significant associations with youth self-management. These findings suggest that parental perceptions and attitudes, especially expectations and vulnerability perceptions, are important targets for assessment and intervention to promote independence in youth with SB.