Difficulties and Psychological Experiences of Parents of Children with Autism Spectrum Disorders (ASD): A Cross-Sectional Study
DOI:
https://doi.org/10.12974/2311-8687.2024.12.04Keywords:
Autism spectrum disorder (ASD), Children, Experience, Parent, Psychological difficultyAbstract
Introduction: Autism spectrum disorders are brain development disorders with multifactorial etiology, identified by difficulties in communication and social interrelation, like recurrent and stereotyped attitudes, activities, and interests. Families with children with developmental disorders may experience more difficulties than families with children without disorders. Therefore there is a need Finding ways to reduce or manage parental stress for improve the family's quality of life through the evaluation of the causes. This study aims to analyze the difficulties experienced by caregivers and the perceived inclusion and inclusion of parents and children with autism spectrum disorder (ASD) within the social fabric, thereby examining the difficulties parents face in daily life.
Materials and Methods: A cross-sectional study was conducted online through snowball sampling until data saturation from November 2020 - March 2023, through the administration of an online questionnaire made through a Google form and disseminated through social media. Data analysis using the Statistical Package for Social Science (SPSS) Software version 17.
Results: 404 parents of children with ASD 94.8% of whom are mothers with an average age of 40.23 years. The prevalence of parents correctly defined autism as "a neurodevelopmental disorder characterized by difficulties in social interaction and communication, limited interests, and repetitive behaviors". At final diagnosis, the study results reported for 87.9% of parents sadness and grief at diagnosis, followed by fear (83.9%).
Conclusions: Research in this area is critical as it can assist health care providers and scholars in understanding the unique issues parents face in raising a child with ASD, as well as support parents themselves in identifying factors that contribute to their stress level in order to take the right steps to reduce it and improve their overall well-being.
References
American Psychiatric Association, DSM-5 Task Force. (2013). Diagnostic and statistical manual of mental disorders: DSM-5™ (5th ed.). American Psychiatric Publishing, Inc. https://doi.org/10.1176/appi.books.9780890425596
Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023; 72(No. SS-2): 1-14.
Istituto Superiore di Sanità e dal Ministero della Salute; 'Progetto Osservatorio per il monitoraggio dei disturbi dello spettro autistico'. Data di pubblicazione: 3 Giugno 2021. Documento valutabile sul sito: https: //www.salute.gov.it/portale/saluteMentale/dettaglioContenutiSaluteMentale
Leonardi E, Cerasa A, Servidio R, Costabile A, Famà FI, Carrozza C, Spadaro L, Scifo R, Baieli S, Aiello S, Marino F, Tartarisco G, Vagni D, Pioggia G, Ruta L. The Route of Stress in Parents of Young Children with and without Autism: A Path-Analysis Study. Int J Environ Res Public Health. 2021; 18(20): 10887. https://doi.org/10.3390/ijerph182010887
Barroso NE, Mendez L, Graziano PA, Bagner DM. Parenting Stress through the Lens of Different Clinical Groups: a Systematic Review & Meta-Analysis. J Abnorm Child Psychol. 2018; 46(3): 449-461. https://doi.org/10.1007/s10802-017-0313-6
Hayes SA, Watson SL. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders 2013; 43(3): 629-642. https://doi.org/10.1007/s10803-012-1604-y
J. Blacher, C. L. Neece, and E. Paczkowski, "Families and Intellectual Disability," (2005) Current Opinion in Psychiatry 2005; 18(5): 507-13. https://doi.org/10.1097/01.yco.0000179488.92885.e8
Locandro S. Autismo e qualità di vita della famiglia. Phenomena Journal - Giornale Internazionale Di Psicopatologia, Neuroscienze E Psicoterapia 2021; 3(2), 151-160.
Haque MA, Salwa M, Sultana S, Tasnim A, Towhid MII, Karim MR, Abdullah Al Mamun M. Parenting stress among caregivers of children with neurodevelopmental disorders: A cross-sectional study in Bangladesh. J Intellect Disabil. 2021 Apr 22: 17446295211002355. https://doi.org/10.1177/17446295211002355
Goetz L, Rodriguez G, Hartley SL. Actor-Partner Examination of Daily Parenting Stress and Couple Interactions in the Context of Child Autism. Journal of Family Psychology 2019; 33(5): 554-64. https://doi.org/10.1037/fam0000527
Martins, R., Bonito, I., Andrade, A., Albuquerque, C., & Chaves, C. (2015). The impact of the diagnosis of autism in parents of children. Procedia-Social and Behavioral Sciences, 171, 121-125. https://doi.org/10.1016/j.sbspro.2015.01.097
C. Anderson and C. Butt, "Young Adults on the Autism Spectrum: The Struggle for Appropriate Services," (2018) Journal of Autism and Developmental Disorders 48, no. 11: 3912-25. https://doi.org/10.1007/s10803-018-3673-z
Yorke, I., White, P., Weston, A., Rafla, M., Charman, T., & Simonoff, E. (2018). The association between emotional and behavioral problems in children with autism spectrum disorder and psychological distress in their parents: A systematic review and meta-analysis. Journal of autism and developmental disorders, 48, 3393-3415. https://doi.org/10.1007/s10803-018-3605-y
Vio, C., Marzocchi, G., & Offredi, F. (1999). Il bambino con deficit di attenzione: iperattività; diagnosi psicologica e formazione dei genitori. Edizioni Erickson. ISBN-10, 8879462733
Yorke I, White P, Weston A, Rafla M, Charman T, Simonoff E. The Association Between Emotional and Behavioral Problems in Children with Autism Spectrum Disorder and Psychological Distress in Their Parents: A Systematic Review and Meta-analysis. J Autism Dev Disord. 2018; 48(10): 3393-3415.. Erratum in: J Autism Dev Disord. 2018. https://doi.org/10.1007/s10803-018-3656-0
Cohen S, Williamson G. Perceived Stress in a Probability Sample of the United States. Spacapan, S. and Oskamp, S. (Eds.) The Social Psychology of Health. Newbury Park, CA: Sage, 1988.
Gómez-Marí I, Tárraga-Mínguez R, Pastor-Cerezuela G. Analysis of Spanish Parents' Knowledge about ASD and Their Attitudes towards Inclusive Education. Eur J Investig Health Psychol Educ. 2022; 12(7): 870-881. https://doi.org/10.3390/ejihpe12070063
Wang F, Lao UC, Xing YP, Zhou P, Deng WL, Wang Y, Ji Y, Chen MY, Li H, Zou XB. Parents' knowledge and attitude and behavior toward autism: a survey of Chinese families having children with autism spectrum disorder. Transl Pediatr. 2022; 11(9): 1445-1457. https://doi.org/10.21037/tp-22-113
Wang F, Lao UC, Xing YP, Zhou P, Deng WL, Wang Y, Ji Y, Chen MY, Li H, Zou XB. Parents' knowledge and attitude and behavior toward autism: a survey of Chinese families having children with autism spectrum disorder. Transl Pediatr. 2022; 11(9): 1445-1457. https://doi.org/10.21037/tp-22-113
DesChamps TD, Ibañez LV, Edmunds SR, Dick CC, Stone WL. Parenting stress in caregivers of young children with ASD concerns prior to a formal diagnosis. Autism Res. 2020; 13(1): 82-92. https://doi.org/10.1002/aur.2213
Elder JH, Kreider CM, Brasher SN, Ansell M. Clinical impact of early diagnosis of autism on the prognosis and parent-child relationships. Psychol Res Behav Manag. 2017; 10: 283-292. https://doi.org/10.2147/PRBM.S117499
DePape AM, Lindsay S. Parents' experiences of caring for a child with autism spectrum disorder. Qual Health Res. 2015; 25(4): 569-83. https://doi.org/10.1177/1049732314552455
Estes A, Munson J, Dawson G, Koehler E, Zhou XH, Abbott R. Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism. 2009; 13(4): 375-87. https://doi.org/10.1177/1362361309105658
Lyons AM, Leon SC, Phelps CE, Dunleavy AM. The impact of child symptom severity on stress among parents of children with asd: the moderating role of coping styles. Journal of Child and Family Studies 2010; 19: 516-524. https://doi.org/10.1007/s10826-009-9323-5
Karst JS, Van Hecke AV. Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review Journal 2012; 15: 247-277. https://doi.org/10.1007/s10567-012-0119-6
Moh TA, Magiati I. Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders 2012; 6(1): 293-303. https://doi.org/10.1016/j.rasd.2011.05.011
Poslawsky IE, Naber FBA, Van Daalen E, Van Engeland H. Parental Reaction to Early Diagnosis of Their Children's Autism Spectrum Disorder: An Exploratory Study. Child Psychiatry & Human Development 2013; 45(3): 294-305. https://doi.org/10.1007/s10578-013-0400-z
Ibrahimagic A, Patkovic N, Radic B, Hadzic S. Communication and Language Skills of Autistic Spectrum Disorders in Children and Their Parents' Emotions. Mater Sociomed. 2021; 33(4): 250-256. https://doi.org/10.5455/msm.2021.33.250-256
Salomone E, Settanni M, Ferrara F, Salandin A; CST Italy Team. The Interplay of Communication Skills, Emotional and Behavioural Problems and Parental Psychological Distress. J Autism Dev Disord. 2019; 49(11): 4365-4374. https://doi.org/10.1007/s10803-019-04142-6
Hickey EJ, Bolt D, Rodriguez G, Hartley SL. Bidirectional Relations between Parent Warmth and Criticism and the Symptoms and Behavior Problems of Children with Autism. J Abnorm Child Psychol. 2020; 48(6): 865-879. https://doi.org/10.1007/s10802-020-00628-5
DePape AM, Lindsay S. Parents' experiences of caring for a child with autism spectrum disorder. Qual Health Res. 2015; 25(4): 569-83. https://doi.org/10.1177/1049732314552455
Fairthorne J, Hammond G, Bourke J, Jacoby P, Leonard H. Early mortality and primary causes of death in mothers of children with intellectual disability or autism spectrum disorder: a retrospective cohort study. PLoS One. 2014; 9(12): e113430. https://doi.org/10.1371/journal.pone.0113430
Gibbs K, Bozaid A. Conceptualising inclusive education in Saudi Arabia through conversations with special education teachers. Available from:
Gòmez-Mari I, Sanz-Cervera P, Tàrraga-Mìnguez R. Teachers' Knowledge Regarding Autism Spectrum Disorder (ASD): A Systematic Review. Sustainability 2021; 13: 5097. https://doi.org/10.3390/su13095097
Yazici DN, Akman B. Transition to preschool for children with Autism spectrum disorder: expectations of Turkish parents and teachers. Int J Dev Disabil. 2020; 68(5): 598-608. https://doi.org/10.1080/20473869.2020.1852844
Conte L, Lupo R, Mazzarella C, Calabrò A, Vaglio L, Chirizzi S, Donadio C, Carvello M, Marsella A, Artioli G, Vitale E. Autism Spectrum Disorders and inclusion attitudes in the Italian school environments: teachers' knowledge, attitudes, perceptions and their necessity to consult a healthcare multidisciplinary team. Acta Biomed. 2022; 93(4): e2022284.
Đorđević M, Glumbić N, Memisevic H, Brojčin B, Krstov A. Parent-teacher interactions, family stress, well-being, and parental depression as contributing factors to parental involvement mechanisms in education of children with autism. Int J Dev Disabil. 2021; 68(6): 838-849. https://doi.org/10.1080/20473869.2021.1896962
Crane L, Jones L, Prosser R, Taghrizi M, Pellicano E. Parents' views and experiences of talking about autism with their children. Autism. 2019; 23(8): 1969-1981. https://doi.org/10.1177/1362361319836257
Crane L, Lui LM, Davies J, Pellicano E. Autistic parents' views and experiences of talking about autism with their autistic children. Autism. 2021; 25(4): 1161-1167. https://doi.org/10.1177/1362361320981317
Moore S, Kinnear M, Freeman L. Autistic doctors: overlooked assets to medicine. Lancet Psychiatry. 2020; 7(4): 306-307. https://doi.org/10.1016/S2215-0366(20)30087-0
DePape AM, Lindsay S. Parents' experiences of caring for a child with autism spectrum disorder. Qual Health Res. 2015 Apr; 25(4): 569-83. https://doi.org/10.1177/1049732314552455
Hartley SL, Barker ET, Seltzer MM, Greenberg JS, Floyd FJ. Marital satisfaction and parenting experiences of mothers and fathers of adolescents and adults with autism. American Association on Intellectual and Developmental Disabilities 2011; 116 (1): 81-95. https://doi.org/10.1352/1944-7558-116.1.81
