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Completed

NCT Number: NCT04133246

Parenting Concerns in Patients With Cystic Fibrosis (MucoPar)

The purpose of this study is to explore and collect the perceptions, expectations and needs of CF patients about parenting. This will be done in the context of several small groups of patients led by a psychologist who will ensure that all the participants express themselves; he will encourage them to develop their points of view, their divergences and their common points about what constitutes to be a parent.

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

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Cochin Hospital, Paris, Île-de-France Region, France

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About this study

Life expectancy has improved significantly in cystic fibrosis in recent years. From paediatric 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.

Therefore, the purpose of this study is to explore and collect the perceptions, expectations and needs of CF patients and their spouses about parenting.

All patients with children, followed in 2 large adult CF centers, and their spouses will be invited to participate in a 6 to 10-person discussion group (focus group) led by a psychologist. He will ensure that all the participants express themselves and are encouraged to develop their points of view, their divergences and their common points about what constitutes to be a parent. The discussions will be recorded and transcribed.

Patients who cannot participate in groups (e.g. patients colonized with Burkholderia cepacia complex) but wish to be included in the study will benefit from an individual interview with the psychologist, also registered and transcribed. A thematic analysis will be carried out from the transcriptions of group contents. For individual interviews, phenomenological interpretative analysis (IPA) will be used. A synthesis of the two analyses will then be done.

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

Healthy volunteers accepted: No

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

Inclusion criteria

For patients

  • Have cystic fibrosis
  • Be a parent and raise or have raised at least one child
  • Being followed in one of the two adult CF centers participating in the study

For CF patients' spouses

  • Live with the CF patient participating in the study

For both CF patients and spouses

  • Being an adult (at least 18 y.o.)
  • Have a good level of French and good speaking skills

Exclusion criteria

  • For both CF patients and spouses
  • Psychiatric pathology (borderline state, bipolarity and other psychotic disorders)
  • Serious somatic disease not related to cystic fibrosis

Treatment and study plan

Focus Group

Behavioral

Groups of 6 to 10 patients and spouses led by the psychologist about their parenthood lasting 2 hours

Individual Interview

Behavioral

Interview led by the psychologist about the patient's parenthood

Primary outcomes

  1. Identification of themes about parenthood in CF from groups

    Time frame: 2 years

    by thematic analysis. 8 to 10 focus groups composed of 5 to 10 persons are to be conducted until saturation of themes.

Secondary outcomes

  1. Identification of themes about parenthood in CF from individual interviews

    Time frame: 2 years

    by the IPA method. 20 individual interviews are to be conducted until saturation of themes

  2. Occurrence of themes

    Time frame: 2 years

    number of appearances of each theme, revealed by the 2 analyses, in the group arm on one hand, and in the interview arm on the other hand. The occurrence will provide information on the importance of each theme

Sponsors and collaborators

Lead sponsor

Assistance Publique - Hôpitaux de Paris

Other

Collaborators

  • URC-CIC Paris Descartes Necker Cochin

Registry information

Official study title

Expectations and Needs of Patients With Cystic Fibrosis Becoming Parents - Exploratory Study

Acronym: MucoPar

Important dates

Study start
2019
Primary completion
2020
Study completion
2020
First posted
Oct 21, 2019
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.

View the official ClinicalTrials.gov record (opens in a new tab)

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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