Training Track: Clinical

Lab: CHATS Lab  

Advisor: Grayson Holmbeck, Ph.D.  

Office: Coffey Hall 302

Family coping with childhood chronic illness, associations among parent factors (adjustment, perceptions, behaviors) and youth outcomes in families of youth with medical conditions

Parental Adjustment, Perceptions, and Attitudes: Associations with Self-Management and Outcomes of a Camp-Based Self-Management Intervention in Families of Youth with Spina Bifida

Research has shown that youth with spina bifida (SB) have poorer psychosocial outcomes, including health-related quality of life (HRQOL), compared to typically developing youth. Demographic and illness-severity factors that may affect HRQOL have been identified, but modifiable factors affecting HRQOL have not yet been identified in this population. Potential modifiable factors include parent factors. In fact, in other pediatric populations, parent factors have been found to impact HRQOL above and beyond illness-severity. This impact may be especially salient for youth with SB, as these youth are more socially isolated and depend on parents for both medical and non-medical caregiving needs.The current study proposes that increases in three parent factors (parent distress, parenting stress, and SB-specific parenting stress) lead to less adaptive parenting behaviors, which, in turn, affect youth HRQOL. The present study addresses gaps in the literature by utilizing a longitudinal, multi-method, and multi-informant research design.

Parental Adjustment, Perceptions, and Attitudes: Associations with Self-Management and Outcomes of a Camp-Based Self-Management Intervention in Families of Youth with Spina Bifida

Spina bifida (SB) is a congenital birth defect that is associated with both medical an orthopedic complications. As such, individuals with SB are required to follow a complex medical regimen throughout their lives. The transfer of condition-related responsibilities from caregiver to individual with SB is a major developmental milestone for these individuals. Although many youth with SB desire autonomy, there seems to be a disruption or delay in the acquisition of condition-related independence. Few studies have been conducted to identify modifiable risk factors associated with medical autonomy in youth with SB. The current study seeks to increase understanding of the relationships among parent personal factors, parental perceptions and attitudes, and youth with SB’s condition self-management. Specifically, this study’s first objective is to identify cross-sectional associations between parent variables and youth self-management (both youth responsibility for and youth mastery over condition-related tasks). Further, few interventions specific to promoting self-management for individuals with SB exist. Previous studies have found that a summer camp-based intervention is effective at increasing independence in completing self-management activities for youth and adolescents with SB and have identified moderators (youth IQ, number of shunt revisions, and family income) of the changes experienced by campers. Notably, these specific moderators are not modifiable. It is imperative to understand modifiable factors that could influence youths’ response to the intervention, such as parent factors. This study also seeks to determine the relationships between parent variables and youth responses over time to the psychosocial camp-based intervention targeting self-management. An understanding of how parent factors can influence both youth self-management behaviors and youth with SB’s response to the camp-based intervention can lead to future beneficial adaptations of the intervention and could identify potential targets for future parent-focused interventions.

Grayson Holmbeck, PhD (Chair), Joanna Buscemi, PhD, Catherine Santiago, PhD, Catherine Haden, PhD