Impact of providing nursing support on parental stress related to preoperative care of a newborn with Hirschsprung's disease
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.
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)
Sequential
Pediatric HAH
BehavioralPediatric HAH nursing support for home nursery care provided by parents as part of their child's disease.
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).
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)
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)
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