Date of Award
Fall 9-5-2025
Degree Type
Dissertation
Degree Name
Doctor of Philosophy (PhD)
Department
Psychology
First Advisor
Grayson Holmbeck
Abstract
Spina bifida (SB) is a common congenital birth defect with multiple and varied medical, physical, and psychological impacts. The objective of these studies is to examine youth and parent condition-related knowledge in the context of SB and associations with executive function, quality of life, and medical self-management. Collectively, these studies examine both qualitative and quantitative multi-informant data from youth with SB, their parents, and their teachers. The first study used growth analyses to examine changes in condition-related knowledge over time, predicted by executive dysfunction and inattention, and predictive of medical self-management skills. The second study used qualitative coding methods to explore parent knowledge of SB etiology and perceptions of complications. The third study examined discrepancies between parent and child knowledge of bowel and bladder dysfunction and management in SB, and associations with quality of life, stigma, and transfer of medical responsibility. Findings were discussed in relation to potential interventions aimed at increasing youth and caregiver knowledge to support appropriate medical management for youth with SB.
Recommended Citation
Clark, Olivia Emery, "Youth and Parent Knowledge and Perceptions of Spina Bifida: Associations with Neurocognitive Factors, Self-Management, and Quality of Life" (2025). Dissertations. 4227.
https://ecommons.luc.edu/luc_diss/4227
