West Syndrome: From Medical to Experiential Knowledge

Overview & Synopsis

In West syndrome (WS), a crude symptomatology relies on the family's knowledge of a particular role. It is therefore relevant to describe the fine construction modalities of the knowledge associated with this particular disease. This study will make possible recommendations for therapeutic education programs. Three anthropologists have conducted an anthropological study of 30 families with children aged from 11 months to 15 years: • There were 60 semi-structured interviews. • Participating observations were made at hospitals and at the families' homes over a period of 18 months. • Exchange analyses were conducted through the discussion forum. The results emphasise the importance of experience in building mothers' knowledge of care. This situation makes it difficult to develop knowledge as such. We would rather talk here about "being known" and "knowing-how" to describe the skills developed by parents, especially mothers. These results have an impact on the way in which to build a patient's educational programme, through a comprehensive approach rather than an exclusive medical one.