Date of Award


Degree Type


Degree Name

Doctor of Philosophy (PhD)




Achieving condition-related independence is an important developmental milestone for youth with spina bifida (SB) that can be impacted by a variety of parent factors. This study aimed to investigate (1) the cross-sectional associations between parent factors (adjustment, perceptions, attitudes, behaviors) and youth self-management (e.g., youth's condition-related responsibility and mastery), (2) relations between these same parent factors and changes in youth self-management following participation in a summer camp intervention for one summer, and (3) associations between parent factors and growth in self-management variables over two summers. Participants were 89 camper-parent dyads recruited at a summer camp for youth with SB (Myouth age=12.2 years); 48 families participated across two years. Campers and parents completed assessments at Time 1 (pre-camp) and Time 3 (post-camp) for one or two summers. Parents reported on demographics, their own adjustment, perceptions, and behaviors, and youth with SB's condition-related responsibility and mastery. Youth also reported on condition-related responsibility, and a composite score across both reporters was created. Hierarchical multiple regression analyses and multilevel modeling were used to examine relationships between parent factors and youth self-management. Without covariates, parental overprotection was significantly associated with both camper responsibility and mastery. with covariates, parents' expectations for future goal attainment was the only parent factor significantly positively associated with camper responsibility (β=.63, p<.01) and mastery (β=.22, p<.05), and these associations were moderated by camper age (such that the association was only significant for older campers). When examining changes over one summer, parental expectations for the future were significantly associated with changes in campers' condition-related mastery (β=.31, p<.05). When examining trajectories, parental perception of child vulnerability (PPCV) was significantly negatively associated with the slope of the responsibility growth curve (β=-.01., p<.05), and parents' expectations for future goal attainment was significantly positively associated with the slope of the mastery growth curve (β=.05., p<.05). Parent adjustment was not related to youth self-management. Parent perceptions and behaviors (overprotection, expectations for the future, PPCV) may be important targets for assessment and intervention when promoting condition-related independence for youth with SB.

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.