Objective To evaluate how racial disparities in medication adherence barriers relate to key clinical outcomes (i.e., seizure control and adherence) in pediatric epilepsy and to identify the most critical barriers in determining health outcomes in Black youth and White youth. Methods This observational study included a sample of youth aged 2–17 years with epilepsy obtained by combining data from four different studies. A total of 226 caregivers and 43 adolescents reported on adherence barriers. An electronic monitor was used to measure adherence to the primary antiepileptic drug. Racial disparities in individual barriers were examined. The relative importance of different types of barriers in determining clinical outcomes was evaluated in both Black and White youth. Results Adherence barriers, including running out of medications, access to pharmacies, competing demands, and difficulty swallowing, disproportionally affected Black children with epilepsy compared to White children. System- and community-level barriers emerged as the most important in determining seizure outcomes among Black youth. Both system- and individual-level barriers, on the other hand, were important for adherence outcomes. Conclusions System- and community-level barriers, as opposed to individual-level barriers, are more highly endorsed by Black families compared to White families. These barriers are also the most critical in driving seizure outcomes among Black youth. There is a critical need to shift from a primary focus on individual-level barriers to an approach that deliberately targets larger systemic barriers to reduce the existing adherence and health disparities that affect Black children with pediatric conditions.

Objective Parents of children with newly diagnosed epilepsy may experience elevated parenting stress. The present study examined trajectories of parenting stress over time and identified modifiable predictors of these trajectories. Methods Parents of youth with epilepsy (N = 102; 2–12 years old) completed questionnaires 1, 4, 13, 19, and 25-months post-diagnosis, including measures of parenting stress, family functioning, child psychosocial functioning, sociodemographics, and perceived stigma. Latent growth curve models (LGCM) were used to examine domains of parenting stress over time. Results At baseline, 25–48% of parents reported elevated parenting stress. LGCMs revealed that the parent and child domains of parenting stress were generally stable across time. However, life stress was more variable across time, and parents with higher initial life stress had a greater reduction in life stress over time. Socioeconomic status was identified as a non-modifiable predictor of life stress. Family functioning was associated with greater parenting stress in the parent domain. Child psychosocial functioning was associated with greater parenting stress in the parent and child domains. Conclusions Parenting stress was elevated for a subset of families and appeared to be relatively stable over time, with the exception of life stress, which was more variable. With early screening, child factors and parent appraisals of epilepsy may be valuable targets for clinical intervention with families of children with epilepsy.

Furthermore, I thank everyone who assisted me through this journey in any way. Your encouragement and unyielding support have been instrumental to my completion of this thesis; for that and so much more, I am immensely and eternally grateful.

No abstract

No abstract