Qualitative and Quantitative Study Which Aims to Determine the Specifics of the Announcement for the Diagnosis of Patients With Craniosynostosis and Their Parents to Better Support Them in Their Care

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

574 participants

Study Classification

OBSERVATIONAL

Study Start Date

2014-10-31

Study Completion Date

2016-07-31

Brief Summary

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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.

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Detailed Description

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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.

Conditions

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Craniosynostosis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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quantitative survey 1

parents of 300 patients with craniosynostosis diagnostic

quantitative survey

Intervention Type OTHER

qualitative survey

* parents of 12 newly diagnosed patients, they will be seen 3 times (after the diagnosis, 3 months after surgery, 1 year after surgery
* 12 patients aged over 15 years, operated more than 10 years before

qualitative survey

Intervention Type OTHER

quantitative survey 2

* 100 parents of patients 1 year after surgery
* 100 parents of patients, 5 years after the operation
* 100 patients aged over 15 years and operated over 10 years ago

quantitative survey

Intervention Type OTHER

Interventions

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qualitative survey

Intervention Type OTHER

quantitative survey

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

Group 1 :

Parents of operated children with a clinical diagnosis of craniosynostosis

Group 2 :

* Parents of newly diagnosed children for a craniosynostosis who will be operated
* Children aged 15 who were operated for a craniosynostosis at least 10 years ago

Group 3 :

* Parents of newly diagnosed children for a craniosynostosis who will be operated
* Children aged 15 who were operated for a craniosynostosis at least 10 years ago