Transition of care, organizational culture, and the participatory Parachute project

(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