Trajectories of autonomy development across the adolescent transition in children with spina bifida.

Abstract

Objective:The current study investigated individual growth in autonomy development across the adolescent transition, comparing the trajectories of children with and without spina bifida. Method: Individual growth curve modeling procedures were utilized to describe the developmental course of autonomy across four waves of data collection, from ages 9 to 15, and to test whether illness status [spina bifida vs. matched comparison group (N ϭ 68 for both groups at Time 1)] would significantly predict individual variability in autonomy development. Potential moderators [child gender, SES, and Peabody Picture Vocabulary Test (PPVT) score] of the association between illness status and autonomy development were also examined. Results: Children with spina bifida demonstrated distinct developmental trajectories, though the nature of the group differences varied by type of autonomy development (emotional vs. behavioral), context (i.e. school vs. family), and reporter. Significant interactions with PPVT score and child gender were found. Conclusion: Overall, children with spina bifida show considerable developmental resiliency, but may lag behind their peers in specific areas of autonomy. Boys with spina bifida, and children with spina bifida who have lower than average levels of verbal intelligence, appear to be at greater risk for exhibiting delays in autonomy development.

Predictors of Health-Related Quality of Life over Time Among Adolescents and Young Adults with Sickle Cell Disease

“…This study is the first to examine predictors of HRQoL among AYAs attending an adolescent SCD clinic. The importance of providing transition assistance to adolescents as they begin assuming more responsibility for their healthcare has been widely recognized (de Montalembert et al, 2014;Friedman, Holmbeck, DeLucia, Jandasek, & Zebracki, 2009;Henderson, Friedman, & Meadows, 2010;Lyons, Becker, & Helgeson, 2013). Therefore, it is critical to understand what factors are predictive of HRQoL among this unique age group that is now being seen in clinics designed to facilitate the transition to adult medical healthcare, as well as assist physicians and mental healthcare providers in identifying which patients may be at risk for poorer HRQoL.…”

Spina bifida

“…Children with spina bifida also exhibit social difficulties: they tend to be socially immature and passive, have fewer friends, be less likely to have social contacts outside of school, and to date less during adolescence 134, 137, 138. Most of these difficulties appear to be maintained into young adulthood 135.…”

“…The lowest level of life satisfaction is in the areas of romantic relationships, employment, and financial independence 131. Parents of young people with spina bifida are less likely to discuss issues of sexuality with their offspring 137, 170, and most affected individuals had an inadequate level of knowledge in this area 171. The high rate of obesity in this population (i.e., rates tend to be over 40%; 172), coupled with their continence issues, likely undermine young adults’ efforts to have romantic relationships 172, 173.…”

Perceived Attainment of Developmental Tasks in Adolescents with and without Physical Disabilities

“…Although the size of between-group differences tended to be small, some adolescents with PD could benefit from measures aimed at promoting peer-group integration and -in the case of students with more severe PD -at promoting the attainment of developmental tasks in general. These interventions should start with the identification of barriers to success, such as reduced cognitive capacity, restricted physical abilities and/or social skills (e.g., Friedman et al 2009), and victimization by peers (e.g., Nadeau and Tessier 2009;Masnari et al 2012). Interventions should focus on reducing these barriers and developing the skills needed for forming and maintaining social relationships (e.g., assertiveness), problem-solving, and dealing with victimization.…”