Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l’autisme chez l’enfant (notice n° 1009005)
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| fixed length control field | 05348cam a2200361 4500500 |
| 005 - DATE AND TIME OF LATEST TRANSACTION | |
| control field | 20250125140148.0 |
| 041 ## - LANGUAGE CODE | |
| Language code of text/sound track or separate title | fre |
| 042 ## - AUTHENTICATION CODE | |
| Authentication code | dc |
| 100 10 - MAIN ENTRY--PERSONAL NAME | |
| Personal name | Valderrama, Alena |
| Relator term | author |
| 245 00 - TITLE STATEMENT | |
| Title | Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l’autisme chez l’enfant |
| 260 ## - PUBLICATION, DISTRIBUTION, ETC. | |
| Date of publication, distribution, etc. | 2020.<br/> |
| 500 ## - GENERAL NOTE | |
| General note | 92 |
| 520 ## - SUMMARY, ETC. | |
| Summary, etc. | Informer les parents dont l’enfant vient de recevoir un diagnostic de trouble du spectre de l’autisme (TSA) est un enjeu majeur. Il est nécessaire de mieux comprendre comment les parents interprètent et s’approprient cette information dans leur vie quotidienne afin de mieux répondre à leurs besoins. Objectif Mettre en évidence les besoins d’information, le processus de recherche d’information à partir de cadre conceptuel de la littératie en santé (accès, compréhension, interprétation et utilisation) ainsi que les obstacles et les éléments facilitateurs rencontrés. Méthode Une recherche qualitative auprès de groupes de discussion a été menée avec des parents d’enfants ayant reçu un diagnostic de TSA dans les deux dernières années. Deux des trois groupes étaient formés de parents présentant des facteurs de risque associés à un faible niveau de littératie : monoparentalité, faible scolarité, sans-emploi, immigration récente. Résultats Un manque généralisé d’information sur l’autisme et des préoccupations quant à la qualité de l’information trouvée sur Internet sont constatés. Tous les parents ont exprimé leur difficulté à comprendre l’information présentée. Le nombre d’obstacles rencontrés par ces derniers dans la recherche d’information s’est révélé être amplifié par des besoins importants de soutien social. Conclusion Ces résultats soulèvent la nécessité de mieux répondre aux besoins d’information des parents en adaptant les outils proposés en termes d’accès et de compréhension pour la prise de décisions. En plus du soutien informationnel, il demeure crucial d’offrir différentes formes de soutien social, et ce, tout particulièrement aux parents en situation de vulnérabilité. Des propositions pour améliorer la communication sur l’autisme autour du diagnostic sont proposées. |
| 520 ## - SUMMARY, ETC. | |
| Summary, etc. | 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. |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | diagnostic |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | autisme |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | soutien social |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | parents |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | vulnérabilité sociale |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | littératie en santé |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | autism |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | social support |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | parents |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | diagnosis |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | social vulnerability |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | family |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | health literacy |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Courcy, Isabelle |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Weis-Heitner, Lindsay |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Forgeot d'Arc, Baudouin |
| Relator term | author |
| 786 0# - DATA SOURCE ENTRY | |
| Note | Santé mentale au Québec | 45 | 1 | 2020-01-02 | p. 127-145 | 0383-6320 |
| 856 41 - ELECTRONIC LOCATION AND ACCESS | |
| Uniform Resource Identifier | <a href="https://shs.cairn.info/revue-sante-mentale-au-quebec-2020-1-page-127?lang=fr&redirect-ssocas=7080">https://shs.cairn.info/revue-sante-mentale-au-quebec-2020-1-page-127?lang=fr&redirect-ssocas=7080</a> |
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