{"id":1815,"date":"2021-04-02T12:51:38","date_gmt":"2021-04-02T10:51:38","guid":{"rendered":"https:\/\/www.institut-myologie.org\/imotion\/?p=1815&lang=en"},"modified":"2021-04-02T12:52:56","modified_gmt":"2021-04-02T10:52:56","slug":"sma-par-study-parenthood-experience-parents-children-sma-conducted-sophie-boursange","status":"publish","type":"post","link":"https:\/\/www.institut-myologie.org\/imotion\/2021\/04\/02\/sma-par-study-parenthood-experience-parents-children-sma-conducted-sophie-boursange\/?lang=en","title":{"rendered":"SMA-PAR, a study of the parenthood experience of parents of children with SMA conducted by Sophie Boursange"},"content":{"rendered":"

\"\"<\/p>\n

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.<\/p>\n

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.<\/p>\n

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-T\u00e9l\u00e9thon and Eclas association).<\/p>\n

It receives financial support from the University of Paris and the Rare Diseases Foundation, and institutional support from Roche laboratories and the Filnemus network.<\/p>\n

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.<\/p>\n

 <\/p>\n

> For further details, please send an email to recherche_sma_par@outlook.fr<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

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