Overview

The PRéPaR project aims to construct, with the help of parents and early care providers, a support program for the families of infants at an increased risk for neurodevelopmental disorders, and to evaluate the acceptability and feasibility of such a program. This program aims to strengthen parenting skills, support infant development and improve the continuity of hospital/non-hospital care, including early identification of neurodevelopmental motor disorders and continuation of the support initiated during neonatal hospitalization.

Eligibility

Inclusion Criteria:

WP1

1. For the group of parents of children with documented neurodevelopmental difficulties, their child must meet the following three conditions:
   • Be between 18 months and 48 months corrected age at the time of the first focus group
   • Have at least one risk factor putting them at high neurodevelopmental risk at

     birth

     • Preterm infant ≤ 31 WG + 6 days
     • Birth weight less than 1500g
     • Child who has had a stroke or stages 2 or 3 hypoxic-ischaemic encephalopathy of the newborn according to the Sarnat classification
     • Central neurological lesion, diagnosed on brain imaging.

   • Present an abnormal, non-transient clinical state: diagnosis of cerebral palsy

     made or in progress (GMFCS 1 to 5), central neurological syndrome, diagnosed neurodevelopmental disorder.

The parents must be able to participate in the 3 interviews (T1, T2 and T3).

          2. For the group of infants at high neurodevelopmental risk at hospital discharge, their
             child must meet the following two conditions:
               -  Be between 34 weeks of amenorrhea (i.e., 1.5 months premature) and 12 months of
                  corrected age at the time of the first focus group,
               -  Have at least one risk factor putting them at high neurodevelopmental risk at
                  birth:
                    -  Preterm infant ≤ 31 WG + 6 days
                    -  Birth weight less than 1500g
                    -  Child who has had a stroke or stages 2 or 3 hypoxic-ischaemic encephalopathy
                       of the newborn according to the Sarnat classification
                    -  Central neurological lesion, diagnosed on brain imaging.
             The parents must be able to participate in the 3 interviews (T1, T2 and T3).
          3. Professionals and parent support groups:
        Physiotherapists in private practice, labor and delivery nurses of the Maternal and Child
        Protection, CAMSP (psychomotricians, psychologists) and doctors involved in the care of
        children at developmental risk in charge of the follow-up of children for whom the parents
        have agreed to participate in the study. These professionals must in turn have agreed to
        participate in the study. User representatives (SOS Préma, Le Neurogroup...) who have
        agreed to participate in the study.
        WP2:
          1. Parents of children hospitalized in the neonatal services of the CHU Dijon who meet at
             least one of the following criteria:
               -  Be between 34 weeks of amenorrhea (1.5 months premature) and 3 months of
                  corrected age (3 months post-term)
               -  Have at least one risk factor putting them at high neurodevelopmental risk at
                  birth:
                    -  Child who has had a stroke or stages 2 or 3 hypoxic-ischaemic encephalopathy
                       of the newborn according to the Sarnat classification
                    -  Central neurological lesion, diagnosed on brain imaging.
          2. Professionals:
        Physiotherapists in private practice, labor and delievery nurses of the Maternal and Child
        Protection, CAMSP (psychomotricians, psychologists) and physicians involved in the care of
        children at developmental risk in charge of the follow-up of the children whose parents
        agreed to participate in the study. These professionals must in turn have agreed to
        participate in the study.
        Exclusion Criteria:
          -  Parents who are physically or cognitively unable to participate in a group interview
             or who do not have a sufficient command of French.
          -  Parents who are minors
          -  Parents under legal protection
          -  Parents of children with major orthopedic or traumatic disorders unrelated to the high
             risk of cerebral palsy.