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

NCT ID: NCT05457569

Last Updated: 2024-07-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

88 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-01-09

Study Completion Date

2025-11-30

Brief Summary

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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.

Detailed Description

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Conditions

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Neurodevelopmental Motor Disorders

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Parent Support Group - WP1

Group representatives (SOS Préma, The Neurogroup...)

Focus group (FC) - WP1

Intervention Type OTHER

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

Parents of infants at a high risk of neurodevelopmental disorders - WP1

infants between 34 weeks' gestation and 4 months' corrected age at the time of the first focus group and with at least one risk factor for neurodevelopmental disorder

Focus group (FC) - WP1

Intervention Type OTHER

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

Parents of children with developmental difficulties - WP1

children between 18 and 48 months corrected age at the time of the first focus group:

* with at least one risk factor for neurodevelopmental disorder
* presenting an abnormal, non-transient clinical state

Focus group (FC) - WP1

Intervention Type OTHER

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

Health Professionals - WP1

Private physiotherapists, labor and delivery nurses of the Maternal and Child Protection, Centre d'action médico-sociale précoce (CAMSP) (psychomotricians, psychologists) and doctors involved in the care and follow up of children at risk of developmental disorders whose parents have agreed to participate in the study.

Focus group (FC) - WP1

Intervention Type OTHER

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

Physiotherapist in a private practice - WP2

Physiotherapists working in a private practice

Child Neurodevelopment Questionnaires - WP2

Intervention Type OTHER

during the 4th month of corrected infant age

Evaluation of compliance for the acquired skills in terms of development support - WP2

Intervention Type OTHER

during the 4th month of corrected infant age

Evaluation of physiotherapist satisfaction with the follow-up and the time spent at the consultation - WP2

Intervention Type OTHER

at the end of the study

4 Focus Group (FC) - WP2

Intervention Type OTHER

* Parents who accepted the follow-up
* Parents who have partially completed the programme
* Maternal and Child Protection \& CAMSP professionals
* Physiotherapists in a private practice

Parents - WP2

parents of hospitalized children between 34 weeks of gestation and 4 months of corrected age with at least one risk factor for neurodevelopmental disorder

4 Focus Group (FC) - WP2

Intervention Type OTHER

* Parents who accepted the follow-up
* Parents who have partially completed the programme
* Maternal and Child Protection \& CAMSP professionals
* Physiotherapists in a private practice

PMI-CAMPS - WP2

Labor and delivery nurses from the Protection Maternelle et Infantile, CAMPS (psychomotricians, psychologists) and doctors involved in the care of children at risk of developmental disorders who are in charge of the follow-up of children whose parents have agreed to participate in the study.

4 Focus Group (FC) - WP2

Intervention Type OTHER

* Parents who accepted the follow-up
* Parents who have partially completed the programme
* Maternal and Child Protection \& CAMSP professionals
* Physiotherapists in a private practice

Interventions

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Focus 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

Intervention Type OTHER

Child Neurodevelopment Questionnaires - WP2

during the 4th month of corrected infant age

Intervention Type OTHER

Evaluation of compliance for the acquired skills in terms of development support - WP2

during the 4th month of corrected infant age

Intervention Type OTHER

Evaluation of physiotherapist satisfaction with the follow-up and the time spent at the consultation - WP2

at the end of the study

Intervention Type OTHER

4 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

Intervention Type OTHER

Eligibility Criteria

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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.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Centre Hospitalier Universitaire Dijon

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Chu Dijon Bourgogne

Dijon, , France

Site Status RECRUITING

Countries

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France

Central Contacts

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Sandrine JANDET CARON

Role: CONTACT

0672089035

Facility Contacts

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Sandrine JANDET CARRON

Role: primary

0672089035

Sébastien KRUMM

Role: backup

0380669032

Other Identifiers

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JANDET ReSPIr 2021

Identifier Type: -

Identifier Source: org_study_id

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