Adolescence and emerging adulthood in individuals with spina bifida: A developmental neuropsychological perspective

Introduction Adolescence and early adulthood are transitional periods characterized by numerous biological, psychological, cognitive, and social changes [1, 2]. More changes are seen in adolescence than in any other period of development except infancy. The late teens through twenties are marked by profound change, exploration of possible life directions, and decision-making that has enduring implications [1]. “Change” is the defining construct for these developmental periods and is particularly salient in individuals with chronic health conditions (CHC). Spina bifida myelomeningocele (SBM) is a prototypical example of a CHC with core neurological features (Table 7b.1) and diverse complications (Table 7b.2) impacting development and outcome. Readers are referred to the previous chapter for details regarding the etiology, features, and clinical course of SBM. Individuals with SBM experience not only typical ongoing challenges of adolescence and adult development, but also unique changes owing to their health condition. Both normative and illness-specific changes occur within a larger environmental context that itself undergoes transformation over time. Individuals with SBM also face health system discontinuities such as the transition from pediatric medical care to adult care, and the transition from parent-controlled health care to self-management. We begin this chapter with conceptual frameworks for considering the critical developmental milestones of adolescence and emerging adulthood, and a discussion of the interplay between the developmental issues of these periods and the experience of a CHC. Second, we consider major empirical findings relevant to SBM in adolescence and adulthood.