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NCT Number: NCT04702386

Concerns of Children Whose Parents Have Cystic Fibrosis

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.

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Key information

Conditions

Cystic Fibrosis Congenital, Hereditary, and Neonatal Diseases and Abnormalities Digestive System Diseases Genetic Diseases, Inborn Infant, Newborn, Diseases Lung Diseases Pancreatic Diseases Respiratory Tract Diseases

Age range

6 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Cochin Hospital, Paris, France

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About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Focus Groups

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

Behavioral

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

Primary outcomes

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

    Time frame: 2 years

    Content of groups and individual interviews analysed by thematic analysis

Secondary outcomes

  1. Occurrence of themes

    Time frame: 2 years

    The number of appearances of each theme, in focus groups and in individual interviews will provide information on the importance of each theme.

Sponsors and collaborators

Lead sponsor

Assistance Publique - Hôpitaux de Paris

Other

Collaborators

  • Grégory Lemarchal Association
  • URC-CIC Paris Descartes Necker Cochin

Registry information

Official study title

Experiences, Expectations and Needs of Children Whose Parents Have Cystic Fibrosis - Exploratory Study

Acronym: MUCOKIDS

Important dates

Study start
2021
Primary completion
2022
Study completion
2022
First posted
Jan 8, 2021
Registry last updated
Nov 20, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

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This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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