La place des parents et leur travail dans le parcours éducatif et thérapeutique de leur enfant en situation de handicap

Abstract

En France, de profondes mutations se sont dessinées dans l’approche des maladies et des handicaps dans un contexte de promotion des droits subjectifs des usagers, et plus largement de principes de « démocratie » sanitaire et sociale. La place des familles d’enfants en situation de handicap dans l’élaboration et la conduite des projets d’intervention concernant leurs enfants ont acquis, dans le nouveau cadre législatif du secteur médico-social, une légitimité instituante à travers la notion de projet de vie. L’asymétrie traditionnelle entre professionnels et usagers étant ainsi réduite, nous faisons l’hypothèse d’une activité parentale rendue socialement plus visible. L’article s’appuie sur une partie des résultats d’une recherche qui visait à mettre en lumière les reconfigurations conjointes du travail de suivi des parcours de jeunes en situation de handicap par les familles et les professionnels. L’article examine le volet familial de cette recomposition en restituant la place et le travail des familles dans le parcours éducatif et thérapeutique de leur enfant en situation de handicap.

Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study

“…15 Research in the field of disability and the autism spectrum has highlighted the relevance of conceptualizing parents' experiences of providing support for their child's needs in terms of trajectories and work. 16,17 The concept of trajectory includes not only the 'physiological unfolding of a patient's disease but the total organization of work done [by patients, kin, and professionals] over the course of illness and the impact on those involved with that work and its organization' 18 ,p.66 to control and cope with the consequences (e.g., physical, psychological, social, economic) of the illness situation.…”

“…While this approach is mainly used in the field of chronic illnesses (e.g., cancer), 19,20 it can be relevantly transferred to the field of disability (e.g., chronic situation, impact on life, impact on social integration, 'management' that goes beyond the medical field, uncertainty regarding long-term evolution). 16 Relying on trajectories of care 21 to consider the parental experience of parenting a child with PIMD enables us to consider parenting work performed inside and outside the medical environment as well as the contexts (sociostructural, relational, temporal) within which parenting work is performed. Drawing on the work of Singh, 17 parenting work refers to the range of activities carried out by parents of a child with a disability to manage the disability over time in both public and private spaces.…”

“…The concept of trajectory includes not only the ‘physiological unfolding of a patient's disease but the total organization of work done [by patients, kin, and professionals] over the course of illness and the impact on those involved with that work and its organization’ 18 ,p.66 to control and cope with the consequences (e.g., physical, psychological, social, economic) of the illness situation. While this approach is mainly used in the field of chronic illnesses (e.g., cancer), 19,20 it can be relevantly transferred to the field of disability (e.g., chronic situation, impact on life, impact on social integration, ‘management’ that goes beyond the medical field, uncertainty regarding long‐term evolution) 16 . Relying on trajectories of care 21 to consider the parental experience of parenting a child with PIMD enables us to consider parenting work performed inside and outside the medical environment as well as the contexts (sociostructural, relational, temporal) within which parenting work is performed.…”