A bridge to navigate the transition from pediatric to adult healthcare services in the hospital: Using Participatory Design to support and improve the transition for adolescents and young adults with epilepsy

Worldwide, epilepsy is the most common neurological condition in adolescence. Living with epilepsy in adolescence not only means dealing with recurrent, involuntary, and unpredictable seizures. The condition also has implications beyond physical effects, including emotional well-being, social inclusion, quality of life, and care. Despite numerous recommendations in recent decades, the transition from pediatric to adult care remains challenging for AWEs. It often results in loss of follow-up and poor patient and parent satisfaction, which is frequently associated with a deterioration in health. Although research recognizes transition and transitional care as critical components, the transition to adult care often consists of a single handover by a referral letter (transfer) instead of an organized and gradual process (transition). 

This PhD project aimed to explore, identify, design, and develop an intervention to support and improve the transition from pediatric to adult healthcare services in the hospital for AWEs by involving AWEs, parents, and healthcare professionals. Finally, we aimed to pilot test and evaluate the solution's usability and user satisfaction.

This collaborative qualitative study emphasizes the involvement of all users in the process. It draws inspiration from the three phases of PD to improve the transition from pediatric to adult healthcare services in the hospital. The scientific approach is methodologically grounded in a phenomenologicalhermeneutic approach inspired by Amedeo Giorgi’s interpretive framework. The study was conducted in an outpatient clinic at the Odense University Hospital, a secondary epilepsy center in Denmark, where adolescent's routine epilepsy clinic appointments and regular follow-ups were completed in the patient pathway.

In the first phase, we identified experiences and needs among AWEs through a systematic review and meta-synthesis of 21 qualitative studies, following the PRISMA guidelines. Additionally, ethnographic field studies were conducted, consisting of 10 hours of participant observation of 21 consultations. Furthermore, 15 semi-structured interviews with AWEs and one focus group with HCPs were conducted. The findings reveal that the challenges of transitioning to adult care involve concerns about growing independence, increased self-identity, managing social and emotional impacts, navigating school settings, and adjusting to day-to-day living. Empowering AWEs to be seen as individuals with unique personalities, needs, and capabilities requires a concerted effort from HCPs.

In the second phase, findings from phase 1 formed the basis for a future workshop, where relevant stakeholders were given a voice and engaged in enriching the findings, significantly generating innovative strategies for enhancing the transition process from pediatric to adult healthcare services in the hospital. 

The future workshop also focused on refining and actualizing concepts and solutions conceived during the fantasy stage and implementing them into the future transition process from pediatric to adult clinics, thereby enhancing the consideration of the needs of all users. Through mutual learning and iterative processes, the concept of “the bridge” led to the development of an intervention called the Joint Transition Clinic. The intervention was designed to support and secure a smooth transition from pediatric to adult care by involving the perspectives of AWEs, parents, nurses, and physicians. Laboratory tests further developed the solution and focused on organization, features, and workflow related to the intervention before the next phase. 

In phase 3, between January 2024 and May 2024, the Joint Transition Clinic was pilot-tested. The experience with the Joint Transition Clinic was evaluated through nine interviews with AWEs, 15 hours of video recording, and one focus group with the involved nurses. The analysis showed that the Joint Transition Clinic gave all participants a feeling of safety and confidence to express their needs. Furthermore, the strengthened collaboration and trust between pediatric and adult nurses helped the AWEs become more active in the consultation.

This study contributed unique insight into the patient experiences and needs with respect to transition and living with epilepsy in everyday life. Furthermore, an intervention was developed based on the perspectives of AWEs, parents, and HCPs to improve the future transition process. The first steps have been taken toward implementing an intervention that involves the AWEs in a transition where they can thrive beyond the limitations of their illness and support AWEs in developing responsibility, independence, and confidence as they navigate transitions.