Concerns of Children Whose Parents Have Cystic Fibrosis

NCT ID: NCT04702386

Last Updated: 2025-11-20

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 27 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2021-02-18
• Study Completion Date: 2022-02-18

Brief 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.

Detailed Description

Life expectancy has improved significantly in cystic fibrosis in recent years. From pediatric disease, it has become a disease of the adult, with the emergence of new issues, such as becoming a parent. Parent patients still face the risk of complications and death while their child is still young. However, there is very little data in the literature on parenting in cystic fibrosis. In a first study which is ongoing (43 patients out of the 50 planned have been included), we intended to study parenting, considering the sick parent's point of view.

However, this question does not only concern parents and their spouses. It is also fundamental to take into account the experience of the children, to understand their experiences and their own needs in this context of serious illness of a parent with limited life expectancy.

Therefore, the purpose of this study is to explore and collect the perceptions, expectations and needs of children whose one parent has CF. Children are eligible from the age of 6 if their parents agree.

Children will have semi-structured individual interviews or will participate in focus groups with the study psychologist in order to express their feelings, difficulties, expectations and needs in living with a parent who has CF.

Thematic analysis of the content will first be done separately for individual interviews and focus groups, and a global synthesis will be carried out.

Conditions

Cystic Fibrosis

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: PROSPECTIVE

Study Groups

Focus groups

Children aged 8 years or more participating in a focus group with the study psychologist

Focus groups

Intervention Type: BEHAVIORAL

Groups of 3 to 8 children led by the study psychologist lasting 1 hour for the 8-11-year-old children and up to 2 hours for the children of at least 12 years old, about being the child of a parent with CF

Individual interviews

Intervention Type: BEHAVIORAL

Interview led by the psychologist about being the child of a parent with CF

Individual interviews

All children who have an individual interview with the study psychologist

Focus groups

Intervention Type: BEHAVIORAL

Groups of 3 to 8 children led by the study psychologist lasting 1 hour for the 8-11-year-old children and up to 2 hours for the children of at least 12 years old, about being the child of a parent with CF

Individual interviews

Intervention Type: BEHAVIORAL

Interview led by the psychologist about being the child of a parent with CF

Interventions

Focus groups

Groups of 3 to 8 children led by the study psychologist lasting 1 hour for the 8-11-year-old children and up to 2 hours for the children of at least 12 years old, about being the child of a parent with CF

Intervention Type: BEHAVIORAL

Individual interviews

Interview led by the psychologist about being the child of a parent with CF

Intervention Type: BEHAVIORAL

Eligibility Criteria

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

• Minimum Eligible Age: 6 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Grégory Lemarchal Association

UNKNOWN

Sponsor Role: collaborator

URC-CIC Paris Descartes Necker Cochin

OTHER

Sponsor Role: collaborator

Assistance Publique - Hôpitaux de Paris

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Cécile FLAHAULT, PhD

Role: STUDY_CHAIR

Assistance Publique - Hôpitaux de Paris

Dominique HUBERT, MD

Role: PRINCIPAL_INVESTIGATOR

Assistance Publique - Hôpitaux de Paris

Locations

Cochin Hospital

Paris, , France

Foch Hospital

Suresnes, , France

Countries

France

Other Identifiers

APHP190326

Identifier Type: -

Identifier Source: org_study_id