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| Name | Class |
|---|---|
| URC-CIC Paris Descartes Necker Cochin | OTHER |
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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
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Group arm | Other | Includes subjects enrolled in focus groups |
|
| Interview arm | Other | Includes subjects with individual interviews |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Focus group | Behavioral | Groups of 6 to 10 patients and spouses led by the psychologist about their parenthood lasting 2 hours |
|
| Measure | Description | Time Frame |
|---|---|---|
| Identification of themes about parenthood in CF from groups | by thematic analysis. 8 to 10 focus groups composed of 5 to 10 persons are to be conducted until saturation of themes. | 2 years |
| Measure | Description | Time Frame |
|---|---|---|
| Identification of themes about parenthood in CF from individual interviews | by the IPA method. 20 individual interviews are to be conducted until saturation of themes | 2 years |
| Occurrence of themes |
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Inclusion Criteria:
For patients
For CF patients' spouses
- Live with the CF patient participating in the study
For both CF patients and spouses
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Cécile FLAHAULT, Ph.D | Assistance Publique - Hôpitaux de Paris | Study Chair |
| Dominique HUBERT, MD | Assistance Publique - Hôpitaux de Paris | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cochin Hospital | Paris | Île-de-France Region | 75012 | France | ||
| Foch Hospital |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39764735 | Result | Jacob A, Hubert D, Brain C, Grenet D, Flahault C. Exploring the lived experiences of parents living with cystic fibrosis: A qualitative study. J Health Psychol. 2025 Aug;30(9):2183-2200. doi: 10.1177/13591053241307874. Epub 2025 Jan 7. |
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| ID | Term |
|---|---|
| D003550 | Cystic Fibrosis |
| ID | Term |
|---|---|
| D010182 | Pancreatic Diseases |
| D004066 | Digestive System Diseases |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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| ID | Term |
|---|---|
| D017144 | Focus Groups |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| Individual interview | Behavioral | Interview led by the psychologist about the patient's parenthood |
|
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
| 2 years |
| Suresnes |
| Île-de-France Region |
| 92150 |
| France |
| D030342 |
| Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007232 | Infant, Newborn, Diseases |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |