Abstract
Caregiving is now a priority and support for parents of children with Autism Spectrum Disorder (ASD) is one of the major commitments of the government. It is essential to implement programs that take into account the expectations of families. Quality of Life (QoL) appears to be a good indicator of their needs and a reliable measure to evaluate the effectiveness of the interventions proposed to them. This thesis has three objectives: 1) to compare the QoL of mothers and fathers with a child with ASD, 2) to examine the characteristics of children and parents who can influence parents' QoL, 3) to identify the effects of stress and coping between these characteristics and the QoL. These studies were conducted within a larger research project: the ELENA cohort from which 130 mothers and 130 fathers are included in our analyzes. A wide range of data was collected in addition to the QoL assessment: many of the clinical and socio-demographic characteristics of the children as well as the socio-demographic characteristics of the parents and the transactional processes put in place (parental stress and coping). The results reveal that mothers' QoL is more impacted by the child's disorder than fathers', and support the idea that parents' QoL benefits from being examined separately. We identified the clinical characteristics of children related to parental QOL: the presence of stereotypies and comorbid psychiatric disorders. Becoming more specialized and having more information about autism (via associations or training) also revealed to have a negative impact on their QoL. The application of the Transactional-Integrative-Multifactorial model created by Bruchon-Schweitzer made possible to highlight the mediating and moderating role of stress and coping between these different characteristics and the QoL. This thesis work is of interest both fundamental and applied. It supports assessing the relevance of using the TIM model to study the QoL of parents of children with ASD. It also contributes to a better understanding of the difficulties faced by these parents and makes it possible to submit proposals to the professionals who accompany the families.