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
All adolescents who had CDH surgery in the first month of life, without any other pathology, now aged 12-18 and followed up at the CDH Lille Reference Center, will be asked to take part in the study.
Cohort
Prospective
Not listed
Self-questionnaire (for the subjects)
to collect the level of investment of the subject in their sport participation (from the subject's point of view)
Self-questionnaire (for the subject's parents)
to collect the subject's level of involvement in their sport (from the subject's parents' point of view
semi-directive interview of the subject
allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject (the adolescent)
semi-directive interview of the subject's parents
allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject's parents
study of the diaphragmatic kinetics by cardiac MRI
Complete clinical examination of the subjects and detailed paraclinical evaluation according to the recommendations of the PNDS with the addition of a sequence during the cardiac MRI allowing the study of the diaphragmatic kinetics.
Self-questionnaire and interviews (for the subjects)
Analysis of the verbatim of the self-questionnaires and the interviews, with regard to the real physical capacities of the subjects.
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University Hospital, Lille
Lead sponsor
APEHDia, a french CDH patient association
Collaborator
Rare Disease Foundation, France
Collaborator
