Sociocultural context and autistics' quality of life: A comparison between Québec and France.

LAY ABSTRACT: What is already known about the topic? Quality of life refers to how people perceive aspects of their life such as physical health, material security, and interpersonal relationships. Studies have reported lower quality of life among autistic individuals than in the general population.What does this article contribute? This article contributes to a better understanding of quality of life and its measures from the point of view of autistic adults. By comparing two groups of French-speaking autistic adults from two different places (France and Québec-Canada), this research shows that the perception of quality of life and its determining factors differ for autistic adults living in each country. The Québec group reported a superior quality of life, and some quality of life predictors were different in each group. The social experience of autism-related stigmatization, however, was a powerful predictor of quality of life for all.Implications for practice, research, and policy To promote a higher quality of life for autistic people, it is important to consider the sociocultural context and implement awareness programs and public campaigns aimed at identifying and countering stigmatization processes.

'We're responsible for the diagnosis and for finding help'. The help-seeking trajectories of families of children on the autism spectrum.

This article focuses on parents' process of seeking help for their child when a diagnosis of autism spectrum disorder is made or suspected. The study was conducted with 18 parents of children aged 4-10 years in Quebec (Canada). A trajectory-network approach was applied in order to carry out an in-depth analysis of family help-seeking trajectories based on the relationships mobilised (or neglected) over time and on life course events that may have precipitated (or hindered) help-seeking actions. Semi-directed interviews based on a name generator were conducted. A qualitative analysis of the content of family narratives was done and followed by the production of a schematic representation of each families' help-seeking trajectory. The results identified four constitutive phases during which relationships within the family, within associations, or with health and social services or education professionals helped or hindered the help-seeking process. The results show the relevance of the proposed approach for analysing the help-seeking process and better supporting families of children on the autism spectrum.

[Health Literacy Issues of Parents Seeking Information on Autism Spectrum Disorder Around Time of Diagnosis]. / Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l'autisme chez l'enfant.

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 qualitative content analysis was conducted to explore the process of searching for information 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 communicating 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.

[Online social support as a mode of psychosocial intervention: A review of scientific literature, avenues for future research, and recommendations for practitioners]. / Le soutien social en ligne comme mode d'intervention psychosociale : revue de littérature, pistes de recherche et recommandations pour les intervenants.

OBJECTIVE: The goal of this review is to present online social support interventions described in recent scientific literature, in order to (i) guide organizations wishing to develop such an intervention or to improve an existing program, and (ii) to identify future research directions and recommendations for practitioners. METHODS AND RESULTS: 59 peer-reviewed articles presenting online social support interventions (2006-2016) were analyzed by using a thematic grid focusing on theoretical perspectives on social support, the online platforms used and their functionalities, the process of intervention development and evaluation, the modalities of participation and the facilitation methods, the documented impacts of interventions, and finally future research directions and recommendations for practitioners. A narrative methodology was used to identify challenges in intervention development and implementation, in order to provide guidance to organizations who want to develop or improve their online social support services. CONCLUSIONS: Several research directions and recommendations for the development of online social support interventions are suggested, including the need to develop theoretical models of online social support and enrich traditional models of social support, the need to understand the benefits associated with different levels of participation, the importance of needs assessment in the development of interventions, and the contribution of qualitative methods to the evaluation of interventions.