Overview
The objective is to understand how a population of adolescents - who have undergone diaphragm surgery within their first month of life (i.e. subjects who have been carriers of a rare impacting disease such as congenital diaphragmatic hernia (CDH)) - engages in physical and sports activities and what can be the hindering factors as well as the factors facilitating these practices.
Based on self-questionnaires and semi-structured interviews, this research is a qualitative research in the field of human and social sciences.
The qualitative survey will make it possible to report on the experience of the disease of children and parents; in parallel, a complete medical evaluation of the subjects (clinical and para-clinical) will be carried out.
The analysis of the verbatim of the self-questionnaires and interviews with regard to the real physical capacities of the subjects, will be discussed.
Eligibility
Inclusion Criteria:
- Child/adolescent having undergone surgery for CDH in the first month of life, aged 12 to 18 years; absence of polypathology (i.e. diaphragmatic hernia not associated with another pathology); follow-up at the CDH reference centre, Lille site
- Written consent from both parents allowing the collection of data from the child/adolescent
- Written consent from the parent(s) agreeing to participate in the study by answering the questionnaires and the individual interview, for themselves and for their child
- Possibility of accessing equipment to conduct a video-conference interview if necessary.
Exclusion Criteria:
- Parents or child/adolescent not understanding French
- Parents under guardianship or child under legal protection
