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The Impact of the Birth of a Child With a Rare Abdomino-thoracic Malformation

Not Applicable
Completed
Conditions
Congenital Malformation
Interventions
Other: Interview
Registration Number
NCT03565822
Lead Sponsor
University Hospital, Lille
Brief Summary

Qualitative study in psychology whose main objective is to propose a grounded theory to report the dynamics of parental adjustment for the period from the announcement of the diagnosis to one year of the child affected by a rare thoracic abdominal congenital malformation, requiring neonatal surgery.

Detailed Description

Not available

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
30
Inclusion Criteria
  • to be the parent of a child aged 12 to 36 months old having undergone neonatal surgery following oesophageal Atresia, congenital diaphragmatic hernia or short bowel syndrome diagnosis.
  • to have lived with the child during his first year of life
  • to have social security coverage
  • to speak french
Exclusion Criteria
  • to be a person not having the capacity to consent or enjoying social protection (tutorship or guardianship);
  • to be a person deprived of liberty;
  • to be a minor;
  • to be pregnant.

Study & Design

Study Type
INTERVENTIONAL
Study Design
SINGLE_GROUP
Arm && Interventions
GroupInterventionDescription
interviewInterviewThere are two data collection phases (individual interviews +/- focus groups) with parents of children with esophageal atresia, congenital diaphragmatic hernia or short bowel syndrome.
Primary Outcome Measures
NameTimeMethod
Level of the dynamics parental adjustment for the period from the announcement of the diagnosis to one year of the child with a rare abdominothoracic malformation requiring neonatal surgery.at 1 year

Measure Qualitative Interviews by Grounded theory. The experience with the information received on the disease, describing the socio-demographic characteristics of parents and children with malformation

Secondary Outcome Measures
NameTimeMethod

Trial Locations

Locations (1)

Hôpital Jeanne de Flandres, CHU

🇫🇷

Lille, France

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