Retentissement du handicap de l'enfant sur la vie familiale

Abstract : The child's disability could impact family life in several dimensions: physical and psychological health, social and family relationships, time management, employment and economic weight. Knowledge about the factors related to this effect will limit the negative impact on family life.The family impact of the cerebral palsy (CP) in European adolescents was studied in 2009 and the personal, social and environmental factors of these families were also collected. A questionnaire measuring 5 dimensions of the 7 identified in literature was used. Extended to missing dimensions by adding four questions, this improved tool has been validated in the framework of this European survey.A theoretical model based on the Double ABCX model of family adaptation has been compared to the situation observed by these families, linking the stressors related to the child or the family environment (A), the resources available to cope with (B), the negative perceived impact in different dimensions of the family life (C) and the level of family adaptation, measured by the parental psychological distress (X). Structural equation modelling was used to validate a model estimating significant correlation coefficients between variables by an iterative method using weighted least squares (WLSMV). 57.4% of the variance in psychological distress was explained by stressors (A): age of the adolescent (beta=0.19), parental unemployment (beta=0.25), the severity of motor impairment (beta=0.23), the severity of behavioural disorders in adolescents (beta=0.45); by resources (B), the access to support in the childcare (beta=-0.15), the level of family dysfunction (beta=0.40), the parental positive attitude towards disability (beta=-0.16); and finally by the negative perceived impact (C) on the health of family members (beta=0.45). Some elements from (A) and (B) explained the perceived family impact in various dimensions of family life. Based on this model, in adolescence the family adaptation to disability seems to be more played out on quality of family functioning than on physical adaptation or financial compensation. Thus it is important to implement process to enable families to improve different aspects of this functioning. The use of validated measurement tools can help to assess and select the most effective interventions to manage behavioural problems in children with disabilities, to increase the autonomy of the child, to promote family functioning or parental positive attitudes towards disability.A lack of employment affecting the psychological well-being, this has been studied for mothers of children with disabilities. From an analysis of available data, we found that taking into account many characteristics of the child and family, the presence of an intellectual impairment in children and a low level of education of the mother or the father’s nonemployment appeared to significantly influence the risk of non-employment of the mother. On the other hand, the mothers of children with severe disabilities were more likely than the general population to be not employed (47.2% against 31.4%). But in contrast, mothers of children with CP interviewed during a survey were not more unemployed than mothers in the general population; calling into question the use of CP as a model of disability to study family consequences.The study of the impact of disability is still too rare in Europe and the effects of possible interventions little known. It is important to develop research in this area to improve the lives of these families and provide children with disabilities the best possible environment for its development.The study of the impact of disability is too rare in Europe and little is known on the effects of possible interventions. It is important to develop research in this area to improve the life for these families and to provide for disabled children the best possible environment for its development.
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Audrey Guyard. Retentissement du handicap de l'enfant sur la vie familiale. Santé publique et épidémiologie. Université de Grenoble, 2012. Français. ⟨NNT : 2012GRENS031⟩. ⟨tel-00798912⟩

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