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.
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.
Parents or child/adolescent not understanding French
Parents under guardianship or child under legal protection
University Hospital, Lille
Lead sponsor
APEHDia, a french CDH patient association
Collaborator
Rare Disease Foundation, France
Collaborator