CompletedNot Applicable

Concerns of Children Whose Parents Have Cystic Fibrosis

France27 participantsStarted 2021-02-18

Plain-language summary

As more and more patients with cystic fibrosis (CF) become parents, we have studied parenting concerns in this serious chronic disease in a first study (MucoPar) which is ongoing. The current study (MucoKids) is an extension of the previous MucoPar study and aims to explore and collect the perceptions, expectations and needs of children whose one parent has CF. This will be done in the context of individual interviews or in several small groups of children led by a psychologist who will encourage them to develop what constitutes to be the child of somebody with CF. The collected information should make it possible to develop and propose adapted medico-psycho-social interventions, if necessary, in connection with patient associations.

Who can participate

Age range6 Years

SexALL

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Inclusion Criteria: * Have a parent with CF cared at one of the 2 adult CF centres participating into the study * Have the authorization of the parent with CF if the child is an adult and of both parents for subjects less than 18 years old * Be ay least 6 years old * Have a good level of French and good speaking skills for adolescents and adults * Have a level of French and oral expression skills adapted to their age group for the youngest Exclusion Criteria: * Psychiatric pathology (borderline state, bipolarity and other psychotic disorders) in their parents or themselves * Serious somatic disease not related to cystic fibrosis in their parents or themselves

What they're measuring

Identification of themes about being the child of a parent with CF

Timeframe: 2 years

Trial details

NCT IDNCT04702386

SponsorAssistance Publique - Hôpitaux de Paris

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2022-02-18