Research Publications

This study uses the Life Course Model for Spina Bifida (SB) to advance knowledge of factors associated with change in quality-of-life (QOL) among emerging adults with SB.

Study explores psychological symptoms in emerging adults with spina bifida (SB) and their association with self-management and satisfaction with family functioning. Longitudinal data were collected at 2 time points, 15 months apart, in 48 individuals with SB. Reliable change indices and paired samples t-tests assessed change in anxiety and depressive symptoms. Hierarchical regression models explored the contributions of SB severity, family satisfaction, and self-management in explaining change in psychological symptoms. 

A family-centered approach to health care for children with special health care needs (CSHCN) is widely acknowledged as the ideal model of service delivery, but less is known about the actual practice of family-centered care (FCC), especially from the viewpoints of parents and health care professionals. This cross-sectional research compared parent and health care professional perspectives on the degree to which FCC is being provided at a large, urban hospital in the United States. The Measure of Process of Care (MPOC) was administered to a representative sample of 92 parents of CSHCN; a convenience sample of 43 health care professionals completed the service provider version of the MPOC. A mixed-model analysis of variance was conducted to test for group differences on matched domain scores of the MPOC. No significant differences emerged between the two stakeholder groups, but significant …