A large number of parents of children with intellectual deficiencies experience distress, which has often been attributed to the care demands caused by the deficiency and the child's lack of autonomy. However, according to our study, in the 43% of parents presenting a high level of distress, this distress is primarily due to problem behaviour in the child, rather than the child's degree of intellectual deficiency or lack of autonomy. Given this fact, it becomes pertinent to ask whether the help and services available to parents are really meeting their needs.
According to this study, 43% of parents present a high level of distress.
The parents interviewed claim to be generally satisfied with government services. Respite care proves to be the most often used and the most in demand. Many parents even pay for this service themselves when they feel that they have insufficient access through the system. The results also show that this service contributes to the well-being of the parents. Given its impact on quality of life, how can we explain that 41% of the parents in distress in our study do not have access to this service? This raises questions about available resources and the ways in which they are allocated.
According to the research team's findings, the implementation of the Programme de soutien à la famille des personnes handicapées is not uniform between regions or areas. Furthermore, the program's budget has hardly evolved in 10 years. These observations highlight the importance of revising current practices and tools in order to evaluate the true needs of parents of children with intellectual deficiencies and to ensure that the resources available are successful in meeting those needs. This is even more important in light of the fact that access to respite care may be a factor when deciding whether or not to place a child in an institution.
Main researcher: Lise Lachance, Université du Québec à Chicoutimi
Original title: Étude des facteurs associés à la détresse psychologique des mères et des pères d'un enfant ayant une déficience intellectuelle et de leurs besoins en matière de services selon les caractéristiques de l'enfant