Families of children with Autism Spectrum Disorder: Experiences during First COVID-19 Lockdown in Chile
Main Article Content
Abstract
The lockdown due to COVID-19 pandemic brought a series of events that affected individuals, mostly related to mental health issues such as increased alcohol consumption, increased domestic violence and the emergence of psychiatric disorders. Children with Autism Spectrum Disorder (ASD) are particularly vulnerable, their routines were interrupted and professional help changed in this period. These situations were difficult to handle and adapt for children and their family.
This qualitative cross-sectional exploratory study examined the experience of families with ASD children who are enrolled in an ASD outpatient clinical university center in Chile during the first lockdown due to COVID-19 pandemic. Twenty individual semi-structured interviews recorded by video call were carried out by mental health professionals to parents of ASD children aged between 2 to 18 years old and were transcribed verbatim.
Using a Reflexive Thematic Analysis results display heterogeneity in the responses, with main themes related to: Information given, family changes, emotional/conductual changes in ASD children and relationship with social services. There was a balance between positive and negative perceptions. Several external family stressors increased while others disappeared during the lockdown. Both aspects should be taken into account developing more accurate services for ASD patients and their families.
Keywords:
COVID, Autism, lockdown, family experience, children
Article Details
How to Cite
MEDEIROS, Maria Elisa Coelho et al.
Families of children with Autism Spectrum Disorder: Experiences during First COVID-19 Lockdown in Chile.
Medical Research Archives, [S.l.], v. 11, n. 5, may 2023.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/3826>. Date accessed: 04 dec. 2024.
doi: https://doi.org/10.18103/mra.v11i5.3826.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
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32. Pellicano E, Brett S, den Houting J, et al. COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study. Autism. 2021;26(4):136236132110359. doi:https:doi.org/10.1177/1362361321103593
2. Manning J, Billian J, Matson J, Allen C, Soares N. Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis. Journal of Autism and Developmental Disorders. 2021; 51(8):2920-2928. doi:10.1007/s10803-020-04760-5
3. Usher K, Bhullar N, Durkin J, Gyamfi N, Jackson D. Family violence and COVID‐19: Increased vulnerability and reduced options for support. International Journal of Mental Health Nursing. 2020; 29(8):549-552. doi:10.1111/inm.12735
4. Tromans S, Kinney M, Chester V, et al. Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic. BJPsych Open. 2020; 6(11):e128. doi:10.1192/bjo.2020.122
5. Amaral DG, Vries PJ. COVID‐19 and Autism Research: Perspectives from Around the Globe. Autism Research. 2020; 13(6):844-869. doi:10.1002/aur.2329
6. Garcia-Huidobro D, Rivera S, Chang SV, Bravo P, Capurro D. System-Wide Accelerated Implementation of Telemedicine in Response to COVID-19: Mixed Methods Evaluation. Journal of Medical Internet Research. 2020; 22(10):e22146. doi:10.2196/22146
7. Bellomo TR, Prasad S, Munzer T, Laventhal N. The impact of the COVID-19 pandemic on children with autism spectrum disorders. Journal of Pediatric Rehabilitation Medicine. 2020;13(11):349-354. doi:10.3233/PRM-200740
8. Association AP. Diagnostic and Statistical Manual of Mental Disorders. Published online 5 2013. doi:10.1176/appi.books.9780890425596
9. C. ML Rutter, DiLavore PC, Risi S, Gotham K, Bishop SL. ADOS®-2 Autism Diagnostic Observation ScheduleTM Manual. Vol Part 1 Módulos 1-4. Second Edition. Tea Ediciones; 2015.
10. Co-SPACE. University of Oxford Co-Space Study. Updated 2023. Accessed March 20, 203. https://cospaceoxford.org/
11. Centro de estudios MINEDUC. Efectos de la suspensión de clases presenciales en contexto de pandemia por COVID-19. Published online 2021. https://bibliotecadigital.mineduc.cl/bitstream/handle/20.500.12365/17238/EVIDENCIAS%2052_2021.pdf?sequence=1&isAllowed=y
12. Dellagnelo L, de Brigard LEG, Jaramillo P, et al. Schooling Disrupted, Schooling Rethought. How the COVID-19 Pandemic Is Changing Education.; 2020. https://globaled.gse.harvard.edu/files/geii/files/education_continuity_v3.pdf
13. Larraguibel M, Rojas-Andrade R, Halpern M, María &., Montt E. Impact of the COVID-19 Pandemic on the Mental Health of Pres-choolers and School Children in Chile. Rev Chil Psiquiatr Neurol Infanc Adolesc. 2021;32.
14. Coelho-Medeiros ME, Gálvez AP, Farías ACN, Roy CL, Riquelme A, López-Espejo M. Impacto del confinamiento en pandemia COVID-19 en la conducta de niños, niñas y adolescentes con trastorno del espectro autista. Andes Pediatrica. 2022; 93(12):832. doi:10.32641/andespediatr.v93i6.4095
15. Asbury K, Toseeb U. A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 2, qualitative findings. Autism: The International Journal of Research and Practice. Published online June 6, 2022:13623613221086997. doi:https://doi.org/10.1177/13623613221086997
16. Lee V, Albaum C, Tablon Modica P, et al. The impact of COVID ‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review. Autism Research. Published online September 30, 2021. doi:https://doi.org/10.1002/aur.2616
17. Bruni O, Melegari MG, Breda M, et al. Impact of COVID-19 lockdown on sleep in children with autism spectrum disorders. Journal of Clinical Sleep Medicine. Published online July 9, 2021. doi:https://doi.org/10.5664/jcsm.9518
18. Tokatly Latzer I, Leitner Y, Karnieli-Miller O. Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Autism. 2021;25(4):136236132098431. doi:https://doi.org/10.1177/1362361320984317
19. Murphy LD, Cobb HR, Rudolph CW, Zacher H. Commuting demands and appraisals: A systematic review and meta-analysis of strain and wellbeing outcomes. Organizational Psychology Review. Published online October 20, 2022:204138662211314. doi:https://doi.org/10.1177/20413866221131404
20. Huston AC, Rosenkrantz Aronson S. Mothers’ Time With Infant and Time in Employment as Predictors of Mother?Child Relationships and Children’s Early Development. Child Development. 2005;76(2):467-482. doi:https://doi.org/10.1111/j.1467-8624.2005.00857.x
21. Parenteau CI, Bent S, Hendren RL et al. 51.1 A QUALITATIVE ANALYSIS: THE EXPERIENCE OF PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER DURING THE COVID-19 PANDEMIC. J Am Acad Child Amp Adolesc Psychiatry. 2020;59(10):S251. doi:10.1016/j.jaac.2020.08.411
22. Bernal-Ruiz F, Ortega A, Rodríguez-Vera M. The Influence of Parental Skills on Children Executive Performance in the Chilean Context. Journal of Child and Family Studies. 2020;29(11):3103-3116. doi:https://doi.org/10.1007/s10826-020-01827-w
23. Weiss MJ. Hardiness and Social Support as Predictors of Stress in Mothers of Typical Children, Children with Autism, and Children with Mental Retardation. Autism. 2002;6(1):115-130. doi:https://doi.org/10.1177/1362361302006001009
24. Doren FM, Bertolozzi MR. Rol Social y Participación del Padre en la Crianza de sus Hijos/as en la Historia de Chile. Horizonte de enfermería. 2013;24(11):42-49. doi:10.7764/Horiz Enferm.24.1.42
25. Zaidman-Zait A, Mirenda P, Duku E, et al. Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism. 2016;21(2):155-166. doi:https://doi.org/10.1177/1362361316633033
26. Cassidy SA, Nicolaidis C, Davies B, et al. An Expert Discussion on Autism in the COVID-19 Pandemic. Autism in Adulthood. 2020;2(2):106-117. doi:https://doi.org/10.1089/aut.2020.29013.sjc
27. Newton D, Lucock M, Armitage R, Monchuk L, Brown P. Understanding the mental health impacts of poor quality private-rented housing during the UK’s first COVID-19 lockdown. Health & Place. 2022;78:102898. doi:https://doi.org/10.1016/j.healthplace.2022.102898
28. Adams-Prassl A, Boneva T, Golin M, Rauh C. Inequality in the Impact of the Coronavirus Shock: Evidence from Real Time Surveys. Journal of Public Economics. 2020;189(104245):104245. doi:https://doi.org/10.1016/j.jpubeco.2020.104245
29. Weyland M, Maes P, Kissine M, Defresne P. Impact of Belgian COVID-19 lockdown restrictions on autistic individuals’ socio-communicative behaviors and their parents’ quality of life. De Silva D, ed. PLOS ONE. 2022;17(8):e0273932. doi:https://doi.org/10.1371/journal.pone.0273932
30. Drexel University School of Education. Benefits of Online Learning in a Virtual Classroom. School of Education. Published August 3, 2020. https://drexel.edu/soe/resources/student-teaching/advice/benefits-of-online-and-virtual-learning/
31. Eshraghi AA, Li C, Alessandri M et al. COVID-19: overcoming the challenges faced by individuals with autism and their families. Lancet Psychiatry. 2020;7(6):481-483. doi:10.1016/s2215-0366(20)30197-8
32. Pellicano E, Brett S, den Houting J, et al. COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study. Autism. 2021;26(4):136236132110359. doi:https:doi.org/10.1177/1362361321103593