Parenting Concerns in Patients With Cystic Fibrosis (MucoPar)

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

52 participants

Study Classification

INTERVENTIONAL

Study Start Date

2019-09-25

Study Completion Date

2020-12-21

Brief Summary

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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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Detailed Description

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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.

Conditions

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Cystic Fibrosis

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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Group arm

Includes subjects enrolled in focus groups

Group Type OTHER

Focus group

Intervention Type BEHAVIORAL

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

Interview arm

Includes subjects with individual interviews

Group Type OTHER

Individual interview

Intervention Type BEHAVIORAL

Interview led by the psychologist about the patient's parenthood

Interventions

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Focus group

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

Intervention Type BEHAVIORAL

Individual interview

Interview led by the psychologist about the patient's parenthood

Intervention Type BEHAVIORAL

Eligibility Criteria

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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

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No