Craniosynostosis Clinical Trial
Official title:
Craniosynostosis: How to Improve the Diagnosis and Assist Patients and Their Families?
The purposes of this study are:
- to better understand the experience of the announcement for the diagnostic of
craniosynostosis to patients and their families to improve the understanding of it and
it modes of appropriation
- to compare the announcement process concerning "simple" and "complex" forms.
- to identify the intra-family issues at the announcement of a genetic mutation.
- to reconstruct the care course of patients by analyzing the time of the announcement
and the post-operative period.
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.
;
Observational Model: Cohort, Time Perspective: Prospective
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|---|---|---|---|
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