(Translated title. This conference will be held in French.)

Juliette Durocher,
Technical Research Assistant, Pragmatic Health Ethics Research Unit, IRCM

Anne Fournier,
Clinical Professor, UdeM; Head, Electrophysiology, CHU Sainte-Justine

Marie-José Clermont,
Assistant Clinical Professor, Nephrology Service, Pediatrics Department, Faculty of Medicine, UdeM

Frédéric Simard,
patient-partner; research assistant, CHUM

Rocio Gissel Gutierrez Rojas,
Research Coordinator, CHU Sainte-Justine

This conference is part of the Montréal Health Ethics Lecture Series 2024.

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To attend the conference in person, no registration is required. Everyone is welcome!

To attend this event in Zoom, please register by following this link.

To see past conferences: YouTube channel of the Pragmatic Health Ethics Research Unit.

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Summary of the presentation:

The transition from pediatric to adult care is a difficult time in the lives of young people living with a chronic illness. Many transition programs aim to maximize treatment adherence, placing a high value on autonomy and independence. There is a need to broaden the scope of current research and interventions to involve young people as individuals with preferences and aspirations for a fulfilling life that may go beyond biomedical considerations. We have undertaken a participatory action research study, "Parachute", to better understand the needs and aspirations of young people in relation to transition, including their well-being and fulfillment. This presentation will outline the main findings of the study based on (1) interviews with young people, parents and healthcare professionals, (2) a sample survey at the Centre hospitalier universitaire Sainte-Justine, (3) video vignettes from the youth working group and (4) the resulting awareness-raising efforts. We will discuss the implications of the transition for the organizational culture of pediatric and adult care.

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2024 SERIES THEME

Ethics and organizational cultures in the healthcare sector