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| ID | Type | Description | Link |
|---|---|---|---|
| 2022-A02696-37 | Other Identifier | Assistance Publique Hôpitaux de Marseille |
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Impact of providing nursing support on parental stress related to preoperative care of a newborn with Hirschsprung's disease
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| With Hospitalisation at Home (HAH) | Experimental | families living in Marseille, whose parents will be able to return home under the supervision of nursery nurses from the pediatric HAH. |
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| Without Hospitalisation at Home (HAH) | No Intervention | Families living outside Marseille whose parents will have to carry out nursings at home independently, without the help of pediatric HAH. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Pediatric HAH | Behavioral | Pediatric HAH nursing support for home nursery care provided by parents as part of their child's disease. |
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| Measure | Description | Time Frame |
|---|---|---|
| Questionnary to evaluate stress on parents | Evaluation of the impact on parental stress of nursing support by pediatric HAH in nursery care performed at home by parents as part of their child with Hirschsprung using Perinatal Posttraumatic Stress Disorder Questionnaire (PPQ). | From enrollment to the end of treatment at 6 months |
| Measure | Description | Time Frame |
|---|---|---|
| Auto-Questionnary MIB (Mother Infant Bounding) to evaluate the impact of nursing support | Estimate the impact of nursing support by pediatric HAH in nursery care performed at home by parents on the development of the parent-child bond, the burden felt by parents in relation to their child's illness, the length of pre-operative hospital stay (initial and re-hospitalization), the pre-operative complications (recurrent occlusion, enterocolitis) and the home nursing care provided by parents (quality of nursings, pace of nursings, difficulties encountered, child's tolerance) |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Melanie Boulanger | Contact | +33491381245 | promotion.interne@ap-hm.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| APHM | Recruiting | Marseille | France |
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| ID | Term |
|---|---|
| D006627 | Hirschsprung Disease |
| ID | Term |
|---|---|
| D004065 | Digestive System Abnormalities |
| D004066 | Digestive System Diseases |
| D008531 | Megacolon |
| D003108 | Colonic Diseases |
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| From enrollment to the end of treatment at 6 months |
| Self-Questionnary Burden inventory to evaluate the nursery training provided | Evaluate nursery training provided by the paramedical team (feedback from parents) : parent training (nursing, understanding illness, understanding illness-related risks) and training aids (sheet, video) | From enrollment to the end of treatment at 6 months |
| D007410 |
| Intestinal Diseases |
| D005767 | Gastrointestinal Diseases |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |