Impact sur les parents de la paralysie cérébrale chez l’enfant : revue de la littérature

RésuméLa paralysie cérébrale est la principale cause de déficience motrice chez l’enfant. Les parents d’enfants souffrant de ce trouble sont confrontés à une variété de problèmes représentatifs de ceux de tous les parents d’enfants handicapés. L’objectif de cette étude est de faire l’état des connaissances sur cet impact parental en précisant les points de consensus et de divergence. Une recherche d’articles a été réalisée à partir des mots-clés « Cerebral palsy » et « Parents/Father/Mother » et « Adapt/Adjust/Cost/Economic/Impact/Well-being » sur Medline et PsycInfo, entre 1989 et 2009. Sept dimensions d’impact parental ont été isolées pour l’analyse : temps dépensé, limitation au travail, relations sociales, relations familiales, bien-être psychologique, santé physique, conséquences économiques. Sur 40 articles retenus, les études sont majoritairement transversales. Malgré la variété des méthodes, ces différentes dimensions d’impact apparaissent liées entre elles et dépendantes des caractéristiques de l’enfant et de l’aidant. La sévérité de la déficience motrice n’est pas identifiée unanimement comme un facteur aggravant. En revanche, les troubles du comportement de l’enfant influencent l’impact vécu par les parents. Pour permettre une meilleure compréhension des conséquences de la paralysie cérébrale sur la vie des parents et l’effet propre des facteurs contextuels, il est nécessaire de mettre en place des études longitudinales et de vérifier les relations complexes évoquées dans ces articles par une confrontation de modèles théoriques avec les données réelles.

SummaryCerebral palsy is the commonest cause of motor impairment in childhood. Parents of children with this particular neurodevelopmental disorder face many problems encountered by disabled children's parents. The aim of the present paper is to report the current knowledge on this parental impact, highlighting consensus and disagreement. A literature search was conducted using the key words “Cerebral palsy” and “Parents/Father/Mother” and “Adapt/Adjust/Cost/Economic/Impact/Well-being” in the Medline and PsycInfo databases searching for articles published between 1989 and 2009. Seven parental impact dimensions were distinguished: time spent, occupational restrictions, social relationships, family relationships, psychological well-being, physical health, and financial burden. Of 40 selected references, the studies were mostly cross-sectional, although longitudinal surveys highlighted the causal relationship between factors. Despite various methodologies, this review confirms that parents of CP children have greater risk of experiencing a sense of burden than parents of typically normally developing children. Time spent caring for the child appears to be an important factor that depends on the child's autonomy. The 7 impact dimensions seem to be related to each other and to child's and caregiver's characteristics. The severity of motor impairment is not unanimously viewed as a worsening factor: however, the child's behavioral problems influence the impact experienced by the parents. The level of intellectual impairment also has a negative influence on family relationships and on the parent's psychological well-being. The child's developmental stage seems to be related to the level of parental impact, but there is no agreement on the dimensions involved. We also observed that the mother and father do not experience this situation in the same way, probably because of the role played by each one in the family. The current literature lacks data on caregiver characteristics, identifying families at risk of burden, and the environmental context that would allow for a less negative impact on parents. In addition, the tools measuring the impact lack standardization. No questionnaire covering all 7 dimensions exists, but useful validated questionnaires for different dimensions were identified. We consider that the caregiver's occupation and physical health needs further research. The current knowledge is insufficient for proposing an overall model taking all the dimensions into account. Research is needed before a complete model of the CP child's impact on parents can be tested in view of providing guidelines to professionals for identifying families with a risk of maladaptation and suggesting solutions to decrease the negative impact.