Abstract

For youth with spina bifida (SB) there is a growing need to understand how responsibilities for health care are transferred from family- to self-management over time. The current study examined trajectories of responsibility for medical tasks in youth with SB across adolescence, as well as executive functioning/attention and parenting behaviors as predictors of growth. As part of a larger, longitudinal study, 140 youth with SB (ages 8-15 at time 1; Mage = 11.43) reported on their responsibility for relevant medical tasks across five time points. Attention and executive functioning were assessed via performance-based and parent/teacher-report methods. Parenting behaviors consisted of acceptance, behavioral control, and psychological control and were assessed via observational and parent-report. Growth curve analyses revealed significant increases in youth medical responsibility across all SB tasks over time. Attention, executive functioning, maternal behavioral control, and paternal psychological control emerged as predictors of growth parameters in responsibility for communicating about SB and managing health care appointments. Results indicated that youth with SB obtain increasing responsibility for their health care over time. The transfer of responsibility for SB management may differ based on individual (i.e., the child's neuropsychological abilities) and family level (i.e., parenting behaviors) factors. Further research is needed to understand how growth in medical responsibility relates to changes in other aspects of SB self-management across development, such as medical adherence. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

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