Parental experiences of transitioning their adolescent with epilepsy and cognitive impairments from pediatric to adult health care

The objective of this study was to explicate processes that parents of adolescents with epilepsy and cognitive impairments undergo as they transition their adolescent from pediatric to adult health care. The research question was: “What is the experience of parents as they transition their adolescent with epilepsy and cognitive impairments from pediatric to adult health care?”

This was a grounded theory study, based on the philosophical underpinning of symbolic interactionism. Theoretical sampling techniques were used to recruit participants from a large urban and suburban community in Southeast Texas. Participants were parents who had experienced transition of their adolescent with epilepsy and cognitive impairments from pediatric to adult health care. The parents were interviewed and audiotape-recorded using a semi-structured interview guide. Data collection and analysis occurred simultaneously following the tenets of grounded theory. Constant comparative analysis was done to identify categories, linkages among the categories were completed, and a final theory was generated.

Journey of Advocacy is the substantive theory that was derived from the analysis of the experiences of parents as they transition their adolescent with epilepsy and cognitive impairments from the pediatric to the adult health care system. This theory has five temporally sequenced but interactive categories: crisis sparks transition, parents in turmoil, parents as advocates, web of information, and captive waiting. Transitioning their adolescent was multidimensional in nature and required parents to be strong advocates for their adolescent. Parent feelings of rejection and uncertainty revealed during this study add new knowledge to the field. The findings of this study suggest that the degree of cognitive impairment and total dependence influence the complexity of the transition process more than their diagnosis of epilepsy.

This study affirms the need for the development of a transitional program for this group of parents and their adolescent. Moreover, it affirms the need for the development of a program that acknowledges the interrelationship between these parents and the systems they interacted with during this process. Nurses can play a pivotal role in the development and implementation of a transition program.