SMA-PAR, a study of the parenthood experience of parents of children with SMA conducted by Sophie Boursange

Sophie Boursange, psychologist at I-Motion, is currently carrying out research in human and social sciences within the department, under the supervision of Prof. M. Gargiulo, clinical psychologist and Professor of psychology at the University of Paris.

This research aims to describe the subjective experience of parents and to analyze the impact of the disease on family and daily life in a rapidly changing therapeutic environment. The objective is to better understand the needs of families and to improve the support offered to them.

This project is the result of a multidisciplinary collaboration between academics, neuropediatric consultations (Necker Enfants Malades, Trousseau, I-Motion, Garches, the Las Condes clinic in Chile) and patient associations (SMA interest group of AFM-Téléthon and Eclas association).

It receives financial support from the University of Paris and the Rare Diseases Foundation, and institutional support from Roche laboratories and the Filnemus network.

Sixty parents of children with one of the 3 types of SMA, treated or not, are currently being recruited to participate in this research across France.

 

> For further details, please send an email to recherche_sma_par@outlook.fr