Education, Training, and Health. How Can We Develop Pathways for Communicating a Rare Disease Diagnosis to Expectant Parents?

Education, Training, and Health. How Can We Develop Pathways for Communicating a Rare Disease Diagnosis to Expectant Parents?

A book co-authored by Séverine Colinet (BONHEURS/LEPS) and Céline Avenel (LIRDEF) has just been published by Presses Universitaires de la Méditerranée.

This book aims to analyze the prenatal diagnosis process from the perspective of both medical teams and patients, to understand the challenges of training and professional development for healthcare professionals, and to address the unique situation of an unborn child with a rare disease.
This book addresses a fundamental shift in the healthcare system, at the intersection of training, professionalization, care, and professional ethics: patients are active participants and partners in the diagnostic disclosure process. The healthcare team is shifting toward an educational role: developing communication strategies, providing information in a context of uncertainty, and preparing for decisions that will be jointly made by doctors and patients.
The book’s overarching social aim is to understand the diagnostic disclosure process and to explore new training approaches so that they align as closely as possible with the changes shaping the care journey and the professional development of those involved.
This book explores the transformation of the roles of parents and medical teams—and even professional identities—by emphasizing the co-construction of an approach to therapeutic patient education.

Book Description-> Brochure_Education-Training