Education, Training, and Health. How Can We Develop Processes for Disclosing Rare Diseases to Unborn Children?

Education, Training, and Health. How Can We Develop Pathways for Informing Parents-to-Be About Rare Diseases in Their Unborn Child?

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 disclosure process from the perspective of both medical teams and patients, to understand the challenges of training
healthcare professionals and to take into account 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 education, professionalization, patient 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 made jointly by physicians and patients.
The book’s overarching social aim is to foster an understanding of diagnostic disclosure processes and to explore new perspectives on training so that these are as closely aligned as possible with the changes shaping these processes and the professional development of those involved.
This book explores the transformation of the roles of parents and medical teams—and even their professional identities—by emphasizing the collaborative development of an approach to therapeutic patient education.

Book Description-> Prospectus_Education-Training