Hirschsprung Disease
Conditions
Brief summary
Impact of providing nursing support on parental stress related to preoperative care of a newborn with Hirschsprung's disease
Interventions
BEHAVIORALPediatric HAH
Pediatric HAH nursing support for home nursery care provided by parents as part of their child's disease.
Sponsors
Assistance Publique Hopitaux De Marseille
Study design
Allocation
NON_RANDOMIZED
Intervention model
SEQUENTIAL
Primary purpose
SUPPORTIVE_CARE
Masking
SINGLE (Subject)
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* Families (one or two parents) with a newborn or infant under 2 months with confirmed or suspected Hirschsprung disease, for whom nursings are effective and performed 1 to 2 times a day while waiting for surgery. * With a possible return home before surgery * With an information leaflet and non-opposition form signed by one or both parent(s) or by the legal representative.
Exclusion criteria
* The absence of daily nursings * Initial ineffectiveness of nursings requiring a digestive stoma * Failure to return home before surgery * Refusal of one or both parent(s) or legal representative(s)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Questionnary to evaluate stress on parents | From enrollment to the end of treatment at 6 months | 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). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Auto-Questionnary MIB (Mother Infant Bounding) to evaluate the impact of nursing support | From enrollment to the end of treatment at 6 months | 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) |
| Self-Questionnary Burden inventory to evaluate the nursery training provided | From enrollment to the end of treatment at 6 months | 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) |
Countries
France
Contacts
Primary ContactMelanie Boulanger
Outcome results
None listed