Hydrocephalus is a common pediatric neurosurgical condition that requires lifelong care into adulthood. Significant gaps in care are thought to exist for youth transitioning to adult care, but little is known about how patients and their caregivers feel about the process. This study examines the perceptions of adolescents, young adults and caregivers when transitioning from pediatric to adult care at a single Canadian center. Methods: 40 patient/caregivers (7 adolescents, 13 young adults and 20

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... parents) treated at BC Children's Hospital participated in semi-structured interviews using the qualitative research methodologies of grounded theory. Interviews were transcribed verbatim and coded, with common themes identified. Results: Four overarching themes relating to the process of transitioning from pediatric to adult care were identified: (1): Inadequacy of communication between pediatric and adult care teams and patients/caregivers; (2) Uncertainty relating to the prospect of life as an adult with hydrocephalus; (3) Anxiety and fear regarding navigating a new health care environment; and (4) sadness at the loss relationships with the pediatric health care team. Conclusions: We identified a general dissatisfaction with the transitioning process for hydrocephalus. Common themes and concerns identified may form the basis of an improved transitioning model for youth with hydrocephalus as they become adults.