Abstract
Objectives
Autism spectrum disorder (ASD) has a major impact on caregivers. We aimed to describe caregivers’ perceptions concerning their level of knowledge about ASD and their needs to better adapt education and training programs.
Methods
This was a descriptive cross-sectional study conducted through a declarative and self-administered survey in France.
Results
1,013 individuals answered the questionnaire in 2020. If most caregivers felt they had sufficient knowledge about ASD, they still expressed a high level of needs regarding acquiring knowledge, identifying available resources, and finding social/emotional support.
Conclusions
This study highlights the high level of needs of caregivers and their expectations of improving their knowledge and skills to help the person with ASD.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
APA. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub
Baghdadli, A., Pry, R., Michelon, C., & Rattaz, C. (2014). Impact of autism in adolescents on parental quality of life. Qual Life Res, 23(6), 1859–1868. doi: https://doi.org/10.1007/s11136-014-0635-6
Baghdadli, A., Darrou, C., & Meyer, J. (2015). Education thérapeutique des parents d’enfant avec troubles du spectre autistique: Informer, former, accompagner. Elsevier Masson
Baghdadli, A., Alcaraz, C., Rattaz, C., & De la Tribonniere, X. (2020). Mise en oeuvre de programmes d’éducation thérapeutique pour les personnes avec trouble du spectre de l’autisme et leur famille (Délégation interministérielle à la stratégie nationale pour l’autisme au sein des troubles du neuro-développement ed., pp. 140). Paris
Barello, S., Castiglioni, C., Bonanomi, A., & Graffigna, G. (2019). The Caregiving Health Engagement Scale (CHE-s): development and initial validation of a new questionnaire for measuring family caregiver engagement in healthcare. BMC Public Health, 19(1), 1562. doi: https://doi.org/10.1186/s12889-019-7743-8
Bearss, K., Burrell, T. L., Stewart, L., & Scahill, L. (2015). Parent Training in Autism Spectrum Disorder: What’s in a Name? Clin Child Fam Psychol Rev, 18(2), 170–182. doi: https://doi.org/10.1007/s10567-015-0179-5
Brown, H. K., Ouellette-Kuntz, H., Hunter, D., Kelley, E., & Cobigo, V. (2012). Unmet needs of families of school-aged children with an autism spectrum disorder. J Appl Res Intellect Disabil, 25(6), 497–508. doi: https://doi.org/10.1111/j.1468-3148.2012.00692.x
Cappe, E., & Poirier, N. (2016). Les besoins exprimés par les parents d’enfants ayant un TSA: une étude exploratoire franco-québécoise. Annales Médico-psychologiques, revue psychiatrique, 174(8), 639–643. doi: https://doi.org/10.1016/j.amp.2015.06.003
Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97. doi: https://doi.org/10.1177/1362361309354756
Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. doi: https://doi.org/10.1177/1362361315573636
Dawson-Squibb, J. J., Davids, E. L., Harrison, A. J., Molony, M. A., & de Vries, P. J. (2020). Parent Education and Training for autism spectrum disorders: Scoping the evidence. Autism, 24(1), 7–25. doi: https://doi.org/10.1177/1362361319841739
DePape, A. M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qual Health Res, 25(4), 569–583. doi: https://doi.org/10.1177/1049732314552455
Derguy, C., Michel, G., M’bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 156–166. doi: https://doi.org/10.3109/13668250.2015.1023707
Derguy, C., Poumeyreau, M., Pingault, S., & M’bailara, K. (2018). Un programme d’éducation thérapeutique destiné à des parents d’enfant avec un TSA: résultats préliminaires concernant l’efficacité du programme ETAP. L’Encéphale, 44(5), 421–428. doi: https://doi.org/10.1016/j.encep.2017.07.004
Farmer, J., & Reupert, A. (2013). Understanding autism and understanding my child with autism: an evaluation of a group parent education program in rural Australia. Aust J Rural Health, 21(1), 20–27. doi: https://doi.org/10.1111/ajr.12004
Frye, L. (2016). Fathers’ experience with autism spectrum disorder: Nursing implications. Journal of Pediatric Health Care, 30(5), 453–463. doi: https://doi.org/10.1016/j.pedhc.2015.10.012
Gau, S. S. F., Chou, M. C., Chiang, H. L., Lee, J. C., Wong, C. C., Chou, W. J., & Wu, Y. Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263–270. doi: https://doi.org/10.1016/j.rasd.2011.05.007
Gibson, A. N., Kaplan, S., & Vardell, E. (2017). A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder. J Autism Dev Disord, 47(7), 2189–2204. doi: https://doi.org/10.1007/s10803-017-3127-z
Hartley, S. L., Mihaila, I., Otalora-Fadner, H. S., & Bussanich, P. M. (2014). Division of Labor in Families of Children and Adolescents with Autism Spectrum Disorder. Fam Relat, 63(5), 627–638. doi: https://doi.org/10.1111/fare.12093
Holman, H., & Lorig, K. (2004). Patient self-management: a key to effectiveness and efficiency in care of chronic disease. Public Health Rep, 119(3), 239–243. doi: https://doi.org/10.1016/j.phr.2004.04.002
Hoving, C., Visser, A., Mullen, P. D., & van den Borne, B. (2010). A history of patient education by health professionals in Europe and North America: from authority to shared decision making education. Patient Educ Couns, 78(3), 275–281. doi: https://doi.org/10.1016/j.pec.2010.01.015
Ilg, J., Jebrane, A., Paquet, A., Rousseau, M., Dutray, B., Wolgensinger, L., & Clément, C. (2018). Evaluation of a French parent-training program in young children with autism spectrum disorder. Psychologie française, 63(2), 181–199. doi: https://doi.org/10.1016/j.psfr.2016.12.004
Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 337–344. doi: https://doi.org/10.1016/j.rasd.2010.04.017
Kantzer, A. K., Fernell, E., Gillberg, C., & Miniscalco, C. (2013). Autism in community pre-schoolers: developmental profiles. Res Dev Disabil, 34(9), 2900–2908. doi: https://doi.org/10.1016/j.ridd.2013.06.016
Kohane, I. S., McMurry, A., Weber, G., MacFadden, D., Rappaport, L., Kunkel, L., & Churchill, S. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS One, 7(4), e33224. doi: https://doi.org/10.1371/journal.pone.0033224
Lagger, G., Pataky, Z., & Golay, A. (2010). Efficacy of therapeutic patient education in chronic diseases and obesity. Patient Educ Couns, 79(3), 283–286. doi: https://doi.org/10.1016/j.pec.2010.03.015
Levy, S. E., Giarelli, E., Lee, L. C., Schieve, L. A., Kirby, R. S., Cunniff, C., & Rice, C. E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. J Dev Behav Pediatr, 31(4), 267–275. doi: https://doi.org/10.1097/DBP.0b013e3181d5d03b
McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2014). Parenting stress and autism: the role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism, 18(5), 502–510. doi: https://doi.org/10.1177/1362361313485163
Miller, L. V., & Goldstein, J. (1972). More efficient care of diabetic patients in a county-hospital setting. N Engl J Med, 286(26), 1388–1391. doi: https://doi.org/10.1056/nejm197206292862605
Oosterling, I., Visser, J., Swinkels, S., Rommelse, N., Donders, R., Woudenberg, T., & Buitelaar, J. (2010). Randomized controlled trial of the focus parent training for toddlers with autism: 1-year outcome. J Autism Dev Disord, 40(12), 1447–1458. doi: https://doi.org/10.1007/s10803-010-1004-0
Papageorgiou, V., & Kalyva, E. (2010). Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support groups. Research in Autism Spectrum Disorders, 4(4), 653–660. doi: https://doi.org/10.1016/j.rasd.2010.01.001
Pastor-Cerezuela, G., Fernández-Andrés, M. I., Tárraga-Mínguez, R., & Navarro-Peña, J. M. (2016). Parental stress and ASD: Relationship with autism symptom severity, IQ, and resilience. Focus on Autism and Other Developmental Disabilities, 31(4), 300–311. doi: https://doi.org/10.1177/1088357615583471
Pejovic-Milovancevic, M., Stankovic, M., Mitkovic-Voncina, M., Rudic, N., Grujicic, R., Herrera, A. S., & Daniels, A. (2018). Perceptions on Support, Challenges and Needs among Parents of Children with Autism: the Serbian Experience. Psychiatr Danub, 30(Suppl 6), 354–364
Preece, D., Symeou, L., Stošić, J., Troshanska, J., Mavrou, K., Theodorou, E., & Frey Škrinjar, J. (2017). Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. European Journal of Special Needs Education, 32(2), 252–269. doi: https://doi.org/10.1080/08856257.2016.1223399
Rattaz, C., Ledesert, B., Masson, O., Ouss, L., Ropers, G., & Baghdadli, A. (2014). Special education and care services for children, adolescents, and adults with autism spectrum disorders in France: Families’ opinion and satisfaction. Autism, 18(2), 185–193. doi: https://doi.org/10.1177/1362361312460952
Rattaz, C., Alcaraz-Darrou, C., & Baghdadli, A. (2016). Évaluation des effets d’un groupe d’accompagnement parental sur le stress et la qualité de vie après l’annonce du diagnostic de Trouble du Spectre Autistique (TSA) chez leur enfant. Annales Médico-psychologiques, revue psychiatrique, 174(8), 644–650. doi: https://doi.org/10.1016/j.amp.2015.10.023
Samadi, S. A., McConkey, R., & Kelly, G. (2012). The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Development and Care, 182(11), 1439–1453. doi: https://doi.org/10.1080/03004430.2011.616931
Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Supplement 1), S114-S121. doi: https://doi.org/10.1542/peds.2006-2089Q
Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. J Autism Dev Disord, 36(7), 921–933. doi: https://doi.org/10.1007/s10803-006-0129-7
Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Gélie, F., Miot, S., Roeyers, H., & Baghdadli, A. (2019). Coping strategies of parents of children with autism spectrum disorder: a systematic review. Eur Child Adolesc Psychiatry, 28(6), 747–758. doi: https://doi.org/10.1007/s00787-018-1183-3
Author information
Authors and Affiliations
Corresponding author
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Colombet, C., Alcaraz, C., de la Tribonnière, X. et al. Self-reported needs of caregivers of people with Autism Spectrum Disorder. J Autism Dev Disord 53, 2798–2805 (2023). https://doi.org/10.1007/s10803-022-05499-x
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-022-05499-x