Dans ce premier épisode de notre série L'hôpital par les patients, nous présentons le projet Transition / La suite de l’hôpital Necker (AP-HP). Les équipes de l’hôpital ont réfléchi avec leurs jeunes patients à des solutions pour les accompagner vers la transition en hôpital pour adultes. Ateliers collectifs, conseillère en image, professeur de yoga… l’équipe de Necker a tout pensé pour accompagner au mieux ses patients pendant cette période délicate qu’est l’adolescence.
In this first episode of our series "The Hospital Through the Patients' Eyes" we present the Transition project / The Necker Hospital's (AP-HP) Next Step. The hospital teams have brainstormed with their young patients to find solutions to accompany them through the transition to adult hospital care. Collective workshops, image consulting, yoga classes... the Necker team has thought of everything to support their patients during this delicate period of adolescence.
A commitment to better support adolescent patients
The "Transition" project was born out of a desire from the teams at Necker-Enfants Malades Hospital to find innovative solutions to the issue of transitioning young patients from pediatric to adult hospital care.
Necker's teams observed that the hospital had significant potential for improvement in terms of coordinating various stakeholders and addressing the non-medical needs of young patients, especially during this key step of transitioning to adult care.
To delve deeper into this issue, the hospital teams, led by Dr. Nizar Mahlaoui and Béatrice Langellier Bellevue, organized a sharing experiences symposium in June 2014, with the participation of pairs consisting of a pediatrician from Necker Hospital and a specialist doctor in the same pathology from an adult service.
The symposium identified initial avenues for improvement and convinced the hospital management to continue the work through an institutional project. The management of this project was entrusted to a pair consisting of Dr. Mahlaoui and Béatrice Langellier Bellevue, a social worker.
A multidisciplinary team open to dialogue with patients
The project leaders formed a multidisciplinary working group composed of 7 hospital collaborators, meeting once a month. The project team began by conducting an in-depth study of support methods for adolescents affected by rare and chronic diseases, visiting several healthcare facilities (adolescent health centers, Solenn's house, IGR) and interviewing them about their understanding of patient needs, the solutions implemented, or the economic model of support systems.
Based on the study's conclusions, the team organized ideation sessions (brainstorming) within the hospital to generate innovative ideas for patient support. A group of 15 to 20 adolescent patients was regularly involved to understand their needs and provide feedback on the proposed support solutions. Parents of patients were also consulted to share their perspectives as caregivers. Numerous solutions were considered or further developed, while others were discarded.
After six months, in March 2015, the team was ready to submit the project to the Hospitals of Paris-Hospitals of France foundation. In July of the same year, the foundation responded favorably to the request by granting funding covering 50% of the project's cost, a sign of awareness of the transition issue for adolescent patients.
The selected solution aims to better support adolescent patients by addressing their psychological and social needs through 4 key dimensions:
Learning to become adults Taking care of an altered body Preparing for the future, life project with chronic illness Preparing for transition to adult hospitals
To address these multiple and complex issues, the hospital developed the "La Suite" program, consisting of a physical space, a digital platform, and a multidisciplinary service offering.
Comprehensive support in line with adolescent needs and communication codes
In this project, the Necker team reconsidered the patient's role in the hospital in three dimensions:
In terms of project objectives, the ambition to provide patients with comprehensive support
The Necker team aimed to provide adolescent patients with comprehensive support, by addressing all their needs, medical and non-medical. This led them to offer adolescent patients services addressing dimensions such as personal identity, body image, and sexuality.
In terms of methodology, the desire to involve patients in solution development
The Necker team regularly consulted a panel of adolescent patients and their families to test proposed solutions. These exchanges validated the interest of the different services considered and fine-tuned digital features according to the expectations and usage habits of future users. This work continues today and allows the project team to identify new patient needs, such as understanding the financial coverage of healthcare by social security. A therapeutic patient education (TPE) workshop is being developed around this theme.
In terms of communication, the readiness to adapt to the communication codes and habits of the target patients
The team and its providers tried to create for "La Suite" a graphic universe as close as possible to that of adolescents. This led them to opt for a communication focused on video format, with a quirky and humorous style. For example, the YouTubers from "Latte Chaud" created a tutorial for "La Suite" in which they explain to young people how to make a medical appointment on their own.
A new way to support the transition to adult care
The "La Suite" support program has been operational since September 2016. The project has attracted the interest of other hospitals both in France and abroad. The Hospitals of Paris - Hospitals of France foundation has launched a new funding program for hospital projects addressing the transition issue. Finally, adult hospitals partnering with Necker have begun to consider creating a twin reception system for adolescents transitioning to adult care.
What factors contributed to the success of the project? In Necker's team work, we can identify several best practices that have contributed to the initiative's success:
An in-depth study phase of adolescent patient needs and involvement in the project The use of ideation sessions to unleash creativity and generate original solution ideas A study to identify best practices already existing in other hospitals Taking into account feedback from adolescent patients The formation of a multidisciplinary team representing different skills and viewpoints within the hospital
Finally, the support from the hospital's management was also an essential factor in the project's success.
