Acceptability and Feasibility of Implementing a Coordinated Hospital/Non-hospital Parenting Support and Prevention Program for Families of Infants at High Neurodevelopmental Risk After Neonatal Intensive Care Hospitalization
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Neurodevelopmental Motor Disorders
- Sponsor
- Centre Hospitalier Universitaire Dijon
- Enrollment
- 88
- Locations
- 1
- Primary Endpoint
- Typology, categorization and operationalization of parental needs and expectations
- Status
- Recruiting
- Last Updated
- last year
Overview
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.
Investigators
Eligibility Criteria
Inclusion Criteria
- •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).
- •For the group of infants at high neurodevelopmental risk at hospital discharge, their child must meet the following two conditions:
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.
Outcomes
Primary Outcomes
Typology, categorization and operationalization of parental needs and expectations
Time Frame: 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
Time Frame: through WP2 completion an average of 16 months