A qualitative study of transitioning patients with hydrocephalus from pediatric to adult care: fear of uncertainty, communication gaps, independence, and loss of relationships

OBJECTIVE Hydrocephalus is one of the most common condition treated by pediatric neurosurgeons. Many neurosurgeons are unable to continue to care for patients after they become adults. Although significant gaps in care are believed to exist for youth transitioning from pediatric to adult care, very little is known about how patients and their caregivers feel about the process. This qualitative study sought to examine the perceptions of adolescents, young adults, and their caregivers regarding transitioning from pediatric to adult care at a single Canadian center. METHODS The authors explored the perceptions of patients with treated hydrocephalus and their caregivers using semistructured interviews and qualitative research methodologies. A convenience sample was recruited, composed of adolescent patients and their caregivers at the neurosurgery clinic of BC Children’s Hospital, and patients and caregivers recently transitioned to adult care from the clinic. Interviews were transcribed verbatim and coded, with common themes identified. RESULTS Four overarching themes relating to the process of transitioning from pediatric to adult hydrocephalus care for patients and their caregivers were identified from the data: 1) achieving independence, 2) communication gaps, 3) loss of significant relationships and environment, and 4) fear of uncertainty. CONCLUSIONS Overall, patients with hydrocephalus and their families are dissatisfied with the process of transitioning. This study identified common themes and concerns among this cohort that may form the basis of an improved transition model for youth with hydrocephalus as they become adults.