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

University Hospital, Lille

Status: Completed

Conditions: Congenital Malformation

Treatments: Other: Interview

Study type: Interventional

Funder types: Other

Identifiers

NCT03565822

2016-A02050-51 (Other Identifier)

2015_93

Details and patient eligibility

About

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.

Enrollment: 30 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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.

Trial design

Primary purpose: Other

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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30 participants in 1 patient group

interview

Other group

Description:

There are two data collection phases (individual interviews +/- focus groups) with parents of children with esophageal atresia, congenital diaphragmatic hernia or short bowel syndrome.

Treatment:

Other: Interview