Parental Experiences Transitioning Their Adolescent With Epilepsy and Cognitive Impairments to Adult Health Care

Introduction: The objective of this study was to explicate processes that parents of adolescents with epilepsy and cognitive impairments undergo as they help their adolescents transition to adult health care. Method: A qualitative grounded theory methodology was used in this study. Theoretical sampling techniques were used to recruit seven ethnically diverse parents of adolescents 18 years or older with epilepsy and cognitive impairments from the community in a large metropolitan area in the southern United States. Data collection and analysis occurred simultaneously using coding and constant comparison analysis. Results: The substantive theory Journey of Advocacy was developed from interviewing the participants. The theory has five categories: crisis sparks transition, parents in turmoil, parents as advocates, web of information, and captive waiting. Parents emerged as strong advocates in the transition process. Discussion: Transitioning this group of adolescents to adult health care was an unplanned, complex, multisystem process. This study affirms the need to develop a transition program that acknowledges the unique challenges of transitioning adolescents with cognitive impairments and the interrelationship between these parents and other systems.