Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l’autisme chez l’enfant

Health Literacy Issues of Parents Seeking Information on Autism Spectrum Disorder Around Time of Diagnosis

ABSTRACT Objectives Informing parents whose child has just been diagnosed with Autism Spectrum Disorder (ASD) is a major challenge. The purpose of this research is to identify the informational needs of parents of children recently diagnosed with ASD as well as the barriers and facilitators encountered in their search for information.
Methods Qualitative research using the focus group method was conducted with three groups of parents of young children or adolescents diagnosed with ASD within the last two years. Parents were recruited through a hospital clinic. Two groups were parents with one or more risk factors related to low health literacy: single parenthood, low level of schooling, unemployment, recent immigration. A qualita- tive content analysis was conducted to explore the process of searching for informa- tion on autism. Based on the theoretical framework of health literacy, various components were analyzed in terms of access, understanding, interpretation, and use of information for decision-making.
Results The results display that there is a general lack of information on autism, as well as concerns about the quality of the information found on the Internet. All parents expressed difficulty understanding the information they found on their own or in the resources, they were offered. They also shared a desire to access sources of information that present autism in a positive way. The use of information for decision-making was limited. In addition, the obstacles encountered while searching for information revealed the importance of social support. Many of the parents reported feeling stigmatized and judged by others because of their child’s behavior.
Conclusions The results demonstrate the need to respond to the real informational needs of parents and to adapt the resources used during the diagnosis period, particularly for those with lower literacy levels. In addition, the way of communi- cating about the diagnosis needs to be reviewed. In order to address these literacy issues, it is important to offer various forms of social support in combination with informational support. In order to reduce psychological distress, it is necessary to provide support when announcing the diagnosis and raise awareness about autism to reduce the stigma experienced by autistic persons and their loved ones.