Résumés
Résumé
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.
Mots-clés :
- autisme,
- diagnostic,
- littératie en santé,
- parents,
- soutien social,
- vulnérabilité sociale
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 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.
Keywords:
- autism,
- diagnosis,
- family,
- health literacy,
- parents,
- social support,
- social vulnerability
Parties annexes
Bibliographie
- Attal-Vidal, C. et Iribane, P. (2012). Focus groups : mode d’emploi. La Plaine Saint-Denis, France : Afnor.
- Barbour, R. et Kitzinger, J. (1998). Developing Focus Group Research : Politics, Theory and Practice. Londres, R.-U. : SAGE.
- Bearss, K., Burrell, T. L., Stewart, L. M. et Scahill, L. (2015a). Parent Training in Autism Spectrum Disorder : What’s in a Name ? Clinical child and family psychology review, 18(2), 170-182. https://doi.org/10.1007/s10567-015-0179-5
- Bearss, K., Burrell, T. L., Stewart, L. et Scahill, L. (2015b). Parent Training in Autism Spectrum Disorder : What’s in a Name ? Clinical Child and Family Psychology Review, 18(2), 170-182. https://doi.org/10.1007/s10567-015-0179-5
- Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L. et Porter, L. (2019). A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health & Social Care in the Community, 27(4), e143-e157. https://doi.org/10.1111/hsc.12691
- Coplan, J. (2000). Counseling Parents Regarding Prognosis in Autistic Spectrum Disorder. PEDIATRICS, 105(5), e65-e65. https://doi.org/10.1542/peds.105.5.e65
- Courcy, I. et des Rivières-Pigeon, C. (2018). « Ceux qui sont passés par là » : L’aide volontaire et les solidarités de proximité échangés entre parents en contexte d’autisme. Canadian Social Work Review / Revue canadienne de service social, 35(2), 67-85. https://doi.org/10.7202/1058480ar
- Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A. et Hill, E. L. (2018). Autism Diagnosis in the United Kingdom : Perspectives of Autistic Adults, Parents and Professionals. Journal of Autism and Developmental Disorders, 48(11), 3761-3772. https://doi.org/10.1007/s10803-018-3639-1
- Crane, L., Chester, J. W., Goddard, L., Henry, L. A. et Hill, E. (2016). Experiences of autism diagnosis : A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153-162. https://doi.org/10.1177/1362361315573636
- Flick, U. (2013). The SAGE Handbook of Qualitative Data Analysis. Londres, R.-U. : SAGE.
- Godfrey Born, C., McClelland, A. et Furnham, A. (2019). Mental health literacy for autism spectrum disorder and depression. Psychiatry Research. https://doi.org/10.1016/j.psychres.2019.04.004
- Hebert, E. B. et Koulouglioti, C. (2010a). Parental Beliefs About Cause and Course of their Child’s Autism and Outcomes of their Beliefs : A Review of the Literature. Issues in Comprehensive Pediatric Nursing, 33(3), 149-163. https://doi.org/10.3109/01460862.2010.498331
- Hebert, E. B. et Koulouglioti, C. (2010b). Parental Beliefs About Cause and Course of their Child’s Autism and Outcomes of their Beliefs : A Review of the Literature. Issues in Comprehensive Pediatric Nursing, 33(3), 149-163. https://doi.org/10.3109/01460862.2010.498331
- Heidgerken, A. D., Geffken, G., Modi, A. et Frakey, L. (2005). A Survey of Autism Knowledge in a Health Care Setting. Journal of Autism and Developmental Disorders, 35(3), 323-330. https://doi.org/10.1007/s10803-005-3298-x
- Hennel, S., Coates, C., Symeonides, C., Gulenc, A., Smith, L., Price, A. M. et Hiscock, H. (2016). Diagnosing autism : Contemporaneous surveys of parent needs and paediatric practice. Journal of Paediatrics and Child Health, 52(5), 506-511. https://doi.org/10.1111/jpc.13157
- (HLS-EU) Consortium Health Literacy Project European, Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., … Brand, H. (2012). Health literacy and public health : A systematic review and integration of definitions and models. BMC Public Health, 12(1). https://doi.org/10.1186/1471-2458-12-80
- Jensen, C. M., Martens, C. S., Nikolajsen, N. D., Skytt Gregersen, T., Heckmann Marx, N., Goldberg Frederiksen, M. et Hansen, M. S. (2016). What do the general population know, believe and feel about individuals with autism and schizophrenia : Results from a comparative survey in Denmark. Autism, 20(4), 496-508. https://doi.org/10.1177/1362361315593068
- Kaphingst, K. A., Kreuter, M. W., Casey, C., Leme, L., Thompson, T., Cheng, M.-R., … Lapka, C. (2012). Health Literacy INDEX : Development, reliability, and validity of a new tool for evaluating the health literacy demands of health information materials. Journal of Health Communication, 17 Suppl 3, 203-221. https://doi.org/10.1080/10810730.2012.712612
- Karuranga, S., Sørensen, K., Coleman, C. et Mahmud, A. J. (2017). Health Literacy Competencies for European Health Care Personnel. Health Literacy Research and Practice, 1(4), e247-e256. https://doi.org/10.3928/24748307-20171005-01
- Khanna, R. et Jariwala, K. (2012). Awareness and knowledge of autism among pharmacists. Research in Social and Administrative Pharmacy, 8(5), 464-471. https://doi.org/10.1016/j.sapharm.2011.11.002
- Kinnear, S. H., Link, B. G., Ballan, M. S. et Fischbach, R. L. (2016). Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives. Journal of Autism and Developmental Disorders, 46(3), 942-953. https://doi.org/10.1007/s10803-015-2637-9
- Krieger, A.-E., Saïas, T. et Adrien, J.-L. (2013). Promouvoir le partenariat parents–professionnels dans la prise en charge des enfants atteints d’autisme. L’Encéphale, 39(2), 130-136. https://doi.org/10.1016/j.encep.2012.06.002
- Lajonchere, C. M., Wheeler, B. Y., Valente, T. W., Kreutzer, C., Munson, A., Narayanan, S.,… Hwang, D. (2016). Strategies for Disseminating Information on Biomedical Research on Autism to Hispanic Parents. Journal of Autism and Developmental Disorders, 46(3), 1038-1050. https://doi.org/10.1007/s10803-015-2649-5
- Malterud, K. (2001). Qualitative research : Standards, challenges, and guidelines. The Lancet, 358(9280), 483-488. https://doi.org/10.1016/S0140-6736(01)05627-6
- Margat, A., Gagnayre, R., Lombrail, P., Andrade, V. de et Azogui-Levy, S. (2017). Interventions en littératie en santé et éducation thérapeutique : Une revue de la littérature. Santé publique, Vol. 29(6), 811-820.
- Noyes, J., Booth, A., Flemming, K., Garside, R., Harden, A., Lewin, S., … Thomas, J. (2017). Cochrane Qualitative and Implementation Methods Group Guidance paper 2 : Methods for assessing methodological limitations, data extraction and synthesis, and confidence in synthesized qualitative findings. Journal of Clinical Epidemiology. https://doi.org/10.1016/j.jclinepi.2017.06.020
- Papadopoulos, C., Lodder, A., Constantinou, G. et Randhawa, G. (2019). Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health. Journal of Autism and Developmental Disorders, 49(4), 1665-1685. https://doi.org/10.1007/s10803-018-3835-z
- Pescosolido, B. A., Martin, J. K., Lang, A. et Olafsdottir, S. (2008). Rethinking theoretical approaches to stigma : A Framework Integrating Normative Influences on Stigma (FINIS). Social Science & Medicine, 67(3), 431-440. https://doi.org/10.1016/j.socscimed.2008.03.018
- Rootman, I., Gordon-El-Bihbety, D. et Association canadienne pour la santé mentale. (2008). Vision d’une culture de la santé au Canada : Rapport du Groupe d’experts sur la littératie en matière de santé. Agence de santé publique du Canada.
- Rousselon, V. (2012). Les soins d’un enfant autiste au risque de ses voyages. Dialogue, n° 197(3), 117-130.
- Ruiz-Robledillo, N., De Andrés-García, S., Pérez-Blasco, J., González-Bono, E. et Moya-Albiol, L. (2014). Highly resilient coping entails better perceived health, high social support and low morning cortisol levels in parents of children with autism spectrum disorder. Research in Developmental Disabilities, 35(3), 686-695. https://doi.org/10.1016/j.ridd.2013.12.007
- Schultz, T. R., Schmidt, C. T. et Stichter, J. P. (2011). A Review of Parent Education Programs for Parents of Children With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 26(2), 96-104. https://doi.org/10.1177/1088357610397346
- Sénéchal, C. et des Rivières-Pigeon, C. (2009). Impact de l’autisme sur la vie des parents. Santé mentale au Québec, 34(1), 245-260. https://doi.org/10.7202/029772ar
- Smith, L. E., Greenberg, J. S. et Mailick, M. R. (2018). Transitioning Together : A Multi-Family Group Psychoeducation Program for Adolescents with ASD and their Parents. Journal of autism and developmental disorders, 48(1), 251-263. https://doi.org/10.1007/s10803-017-3307-x
- Sørensen, K., Van den Broucke, S., Pelikan, J. M., Fullam, J., Doyle, G., Slonska, Z., … Brand, H. (2013). Measuring health literacy in populations : Illuminating the design and development process of the European Health Literacy Survey Questionnaire (HLS-EU-Q). BMC Public Health, 13(1), 948. https://doi.org/10.1186/1471-2458-13-948
- Steiner, A. M., Koegel, L. K., Koegel, R. L. et Ence, W. A. (2012). Issues and Theoretical Constructs Regarding Parent Education for Autism Spectrum Disorders. Journal of autism and developmental disorders, 42(6). https://doi.org/10.1007/s10803-011-1194-0
- Tétreault, S., Blais-Michaud, S., Marier Deschênes, P., Beaupré, P., Gascon, H., Boucher, N. et Carrière, M. (2014). How to support families of children with disabilities ? An exploratory study of social support services. Child & Family Social Work, 19(3), 272-281. https://doi.org/10.1111/j.1365-2206.2012.00898.x
- Yin, H. S., Johnson, M., Mendelsohn, A. L., Abrams, M. A., Sanders, L. M. et Dreyer, B. P. (2009). The Health Literacy of Parents in the United States : A Nationally Representative Study. Pediatrics, 124(Supplement 3), S289-S298. https://doi.org/10.1542/peds.2009-1162E
10.7202/029772ar