Craniosynostosis: How to Improve the Diagnosis and Assist Patients and Their Families?
Craniosynostosis: How to Improve the Diagnosis and Assist Patients and Their Families?
The purposes of this study are:
The supported hypothesis is that the diagnosis of craniosynostosis disturbs the initial family pattern. The different forms of the disease will have different repercussions on intra-family relationships.
The quality of the announcement done by the doctor influences the way how the subjects (parents and patients themselves) appropriate and incorporate it at short, medium and long term.
This research will contribute to the knowledge of this rare disease by different scientific communities: social sciences, medicine and neuropsychology. The originality of this research lies in interdisciplinary teams involved and the cross looks between professional and associative fields.
To better understand the impact of congenital malformations and specifically those related to craniosynostosis, the experiences of children and their families at short, medium and long term, the research will take place in the center of reference "Dysostoses craniofacial", Pediatric Neurosurgery Service at the Necker Hospital in Paris.
Prior to fieldwork, a thorough literature search will be conducted on issues related to our subject: the announcement, psychological, identity, family and social impacts, as well as the specifics of the disease and its manifestations.
The fieldwork will be included in a longitudinal approach which will be located at the intersection of quantitative and qualitative methods.
Inclusion Criteria :
Group 1 :
Parents of operated children with a clinical diagnosis of craniosynostosis
Group 2 :
Group 3 :
Exclusion Criteria: