What is the PEGASE Program?
The PEGASE Program is a trial program of standardized health care monitoring and treatment which aims to prevent the long-term after-effects of child abuse in very young children placed in care. The 5-year trial (starting at the end of 2019 to 2024) is currently taking place in France and will be carried out with 2500 young children concerned by child welfare measures. These children, ranging from 0 to 7 years old, will benefit from a specific health care monitoring protocol, a program for psychological and psychomotor skills treatment and the monitoring of a cohort. The PEGASE program is financed for 8.5 million euros by the national Ministry of Health.
More about PEGASE...
Who are the children concerned by the PEGASE Program?
PEGASE stand for :
Programme d’Expérimentation d’un protocole de santé standardisé appliqué aux enfants ayant bénéficié avant l’âGe de 5 Ans d’une meSure de protection de l’Enfance, which means :
Trial Program of Standardized Health Care Protocol Applied to Children who have been Concerned by Child Welfare Measures before the age of 5 years old
In France, the Social Security Financing Act of 2018 offered the opportunity to suggest innovative health care trials which, if proven conclusive, could then be applied to the whole national system. It is in this context that the PEGASE Program was chosen by the Ministry of Health and given a budget of 8.5 million euros for the first five years of the trial.
This public health program aims to improve the overall care of young children concerned by child welfare measures (group care, foster families, home monitoring). For the children concerned, the PEGASE Program combines standardized health care monitoring and a treatment plan until the age of 7 years old, both financed by national health insurance. The program also offers the organization of psychological and psychomotor skills treatment when necessary. A specific training program regarding the health care monitoring and care to be put in place is organized for the facilities and health care providers who participate in the program, allowing them to be a part of the collective dynamic of the project.
The novelty of the PEGASE Program is that it is based on the transposition of the monitoring of premature babies and vulnerable children that has already been in place in France for the past 25 years. The PEGASE Program is using these same principles for a further health care follow-up and applying them to children concerned by social welfare measures. These principles are described in the circular letter dated 3 July 2015 (replacing that of 2006) for the health and newborn care networks (FFRSP) in which their missions, particularly towards vulnerable children, are defined as : “As far as vulnerable children are concerned, the challenges of involving different networks in the formalization of a program bringing together the different participants of neonatology, children’s health and handicap are twofold: First, the participants need to be organized (in the health sector as well as in the medical and social fields) in order to guarantee the continuity of the follow-up monitoring, to avoid losing sight of the children concerned and to allow for the identification and early care of disabilities in order to lessen their consequences. Second, these professional practices need to be evaluated, notably in terms of their short and medium-term results in order for them to improve.”
In France, it is estimated that more than 25 000 children under the age of 5 are concerned by child welfare measures every year. Approximately 70% of these children are taken into foster families and 30% stay in collective facilities (state-run children’s care homes, for example) but it is difficult to trace the life trajectory of these children due to a lack of national statistics. The PEGASE Program will integrate 2500 of these children during this first 5-year trial.
How can a facility benefit from participating in the PEGASE Program?
The PEGASE Program is first and foremost a process to improve the quality of treatment of young children in care. Facilities can expect an improvement in the expertise of the teams of health care professionals working to care for these children, thanks to the medical means made available to them: protocol for check-ups and for treatment, the computerization of monitoring (with the measurement of progress or the identification of stagnation). They can also benefit from the positive dynamic of a community in which an exchange of knowledge and practices can take place between facilities through joint training sessions.
The continuous follow-up and monitoring of children’s results, thanks to an Internet platform used to gather data will also allow for feedback regarding their progress.
The PEGASE Program is based on the results of the Saint-Ex Study
Research Coordinator: Dr. Daniel Rousseau, child psychiatrist
Mrs. Mireille Rozé, clinical research psychologist
Components of the PEGASE Program:
1 – Setting-up of an initial standardized physical exam including the compilation of antenatal and health data before the placement of the child.
2 – Scheduling of 19 health check-ups until the child reaches the age of 7, bringing the total number of health check-ups to 20.
3 – Organization by the program of psychological and psychomotor skills treatment, without ruling out other health-care treatment that may also have been recommended.
4 – Continuous compilation of social, health, and developmental data on a dedicated Internet platform.
Tools of the PEGASE Program:
In the different facilities involved, the objectives of the PEGASE Program contribute to:
1 – Improving the care of children, thanks to a physical, psychological and developmental health care monitoring protocol until the age of 7 years old, financed each year by national health insurance.
2 – Ensuring, if necessary, psychological and psychomotor skills treatment as early as possible, also financed by national health insurance.
To that end, the PEGASE Program is making tools available which will allow facilities:
3 – To raise the skill level of the teams of health-care professionals involved, through their participation in a specific training program and by the daily use of evaluation tools which measure and visualize the improvements and difficulties of each child over time (a process that parents can be involved with when possible).
4 – To be part of a network of similar facilities undergoing the same task, helping them to overcome isolation by sharing training sessions, experiences and innovations.
5 - To build on the dynamic of the PEGASE Program to create a professional network – doctors, psychologists, psycho-motor therapists – associated with each facility to ensure the follow-up and health care of children.
6 – To allow children to benefit from a computerized medical-social record, ensuring the traceability of care and of their social and medical history.
Developmental trajectories of children who have experienced abuse in infancy:
The Saint-Ex Study
This study traced the long-term outcomes of a cohort of French children who were abused or neglected in infancy and placed in long-term care. A specific feature of the care system in France is that children placed in out-of-home care are rarely adopted, but remain in foster or residential homes throughout their childhood.
The purpose of the study was to identify factors related to long-term outcomes for children who had been abused or neglected in infancy before being placed in care.
The Saint-Ex Study has been able to describe the outcomes of 129 children who were taken into care between 1994 and 2001, before their 4th birthdays and were followed until they reached the age of 21, keeping track of every one of them.
Comprehensive data has been collected on over 280 variables throughout children’s trajectories and includes: pregnancy and birth data, monitoring before admission into care, circumstances of placement, succession of placements, and then, social, educative, administrative, medical, and judicial follow-ups, schooling, specialized education, economic and sometimes criminal follow-ups. It also covers some aspects that have not been previously explored such as experience of specialized medical and social education, of the criminal justice system, hospitalization admissions and psychiatric care, evolution of the quality of the relationship between parents and child over time, medical and economic costs.
At admission, many children displayed evidence of poor physical and mental health. Many came from turbulent families showing factors such as parental mental health problems and numerous other children placed in care. The findings revealed that all children benefited from their placement. For some, it simply saved their lives. However, they went on to follow contrasting pathways.
The principal finding was that one in four children suffered from debilitating pathologies in adulthood. They suffered from psychological and/or psychiatric disorders and social maladjustment, and developed a dependency on social welfare. In contrast, another 25% who suffered from somatic and still reversible psychological disorders, had more positive outcomes. Their medical and financial costs were less than half those of the preceding group. The remaining 50% presented psychological problems and difficulties of adaptation as adults, but did not suffer from desocialization. Three quarters of the children who became adults presented psychological and/or psychiatric disorders, amongst which, a quarter suffered from debilitating pathologies. The quality of the outcome was statistically linked to early intervention and satisfactory management. It was inversely proportionate to the seriousness of the risk to which the child had been exposed.
Some children who experience abuse and/or are taken into care at a very young age show positive developmental outcomes. Pejorative trajectories can be avoided and could be considerably minimized with better screening and early intervention. The study shows that, for some of the children, placement was not enough to reverse the destructive processes at stake, while for others, it addressed their needs and enabled their growth in terms of personal development. The results of the Saint-Ex Study are all the more relevant as they consider the outcomes of very young children, who are more vulnerable to abuse and separation, who may experience a long succession of placements under Child Protection Services. The benefits and harmful effects of the latter remain controversial issues. One of the limitations of the Saint-Ex Study was the absence of a control group made up of children close to the cohort in terms of their living circumstances, but who had never been taken into care, or were taken into care at a later stage.
What about parents in the PEGASE Program?
Parents will be involved at all levels of the program, depending on their mental and legal capacity to do so, from the authorization request for parental rights to analyzing the respect of the framework of parental visits and their impact. Parents may also be able to participate in the transmission aspect of certain scales of their child’s developmental progress which do not require any special training and which can be carried out by adult caregivers. The training and evaluation of medical professionals will also deal with a variety of different tools which will allow parents to participate in the follow-up and monitoring of their child in the PEGASE Program.
Geographical distribution of the nurseries involved in the PEGASE Program:
To go further
PEGASE Program: Identification of babies in the child protection system at risk of developmental delays or disorders and the implementation of a ‘supra-optimal’ care pathway - Emmanuelle Toussain, Daniel Rousseau
The outcome of children placed in a welfare center or foster care before
the age of 4: Prognostic factors - A. Cailliez, P. Duverger, M. Roze, D. Rousseau, E. Riquin