Transition Challenges for Adolescents with Epilepsy in Denmark Highlighted in New Research

Adolescents living with chronic illnesses, such as epilepsy, face significant challenges during transition from pediatric to adult care, a new study conducted by researchers at Odense University Hospital in Denmark reveals. The study synthesizes qualitative evidence from 21 studies to understand the experiences and needs of adolescents with epilepsy (AWE) during this transition. The findings highlight the importance of creating an environment that supports AWE in developing responsibility, independence, and confidence.

Key Takeaways:

• Adolescents with epilepsy face a range of challenges during transition, including feeling different from others, striving to address the impact of epilepsy in everyday life, and navigating health-illness, situational, and organizational transition issues.
• The transition experience for AWE is more than a change from one clinic to another, but rather a complex pattern of developmental, health-illness, situational, and organizational transition issues.
• Five synthesized findings emerged from the meta-synthesis: (1) AWE feel different from others and strive to address the impact of epilepsy in everyday life; (2) the transition from pediatric to adult care poses a problematic intersection point; (3) the family's role is crucial, with support or parental overprotectiveness influencing AWE's experiences; (4) seeking knowledge and being familiar with epilepsy, supported by healthcare professionals and technologies, is essential; and (5) development of independence and responsibility requires involvement and support from healthcare professionals and parents.
• The study emphasizes the need for understanding, acceptance, and inclusivity to support AWE in facilitating the development of responsibility, independence, and confidence during transitions.

Statistics:

• 3,985 studies were searched across multiple databases, including PubMed, CINAHL, Scopus, Embase, PsycINFO, and ProQuest Dissertations & Theses Global.
• 21 studies were included in the review, with two of the studies conducted in a program with a transition clinic established.
• The meta-synthesis reveals that 5 synthesized findings emerged from the qualitative evidence.

Sources:

• Living with epilepsy in adolescence and young adulthood transitioning from pediatric to adult hospital services: A systematic review and meta-synthesis of qualitative studies. Epilepsy & Behavior, 2024;158:109955.
• Odense University Hospital, Department of Neurology, Odense, Denmark.