Neurodevelopmental Motor Disorders
Conditions
Brief summary
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.
Interventions
OTHERFocus group (FC) - WP1
3 group meetings for each group of parents: 1. Parents only 2. Parents and representatives of patient support groups 3. Parents and health professionals specialized in the care of these children at risk
OTHERChild Neurodevelopment Questionnaires - WP2
during the 4th month of corrected infant age
OTHEREvaluation of compliance for the acquired skills in terms of development support - WP2
during the 4th month of corrected infant age
OTHEREvaluation of physiotherapist satisfaction with the follow-up and the time spent at the consultation - WP2
at the end of the study
OTHER4 Focus Group (FC) - WP2
* Parents who accepted the follow-up * Parents who have partially completed the programme * Maternal and Child Protection & CAMSP professionals * Physiotherapists in a private practice
Sponsors
Centre Hospitalier Universitaire Dijon
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Typology, categorization and operationalization of parental needs and expectations | Through WP1 completion an average of 18 months | These will be used to develop of the early education program |
| Typology of perceived subjective representations and description of barriers and levers to use with parents and professionals | through WP2 completion an average of 16 months | — |
Countries
France
Contacts
Primary ContactSandrine JANDET CARON
Outcome results
None listed