Availability of Support and Quality of Life of Parents of Children with Autism Spectrum Disorders in Pandemic Conditions
Abstract
Due to the COVID-19 pandemic, children with autism spectrum disorders and their parents faced numerous challenges related to health care, education and daily functioning, while available support was limited and often inadequate. The aim of this paper was to examine the differences in subjective quality of life and the support available to parents of children with autism and parents of typically developing children during the state of emergency declared due to the COVID-19 pandemic, as well as to explore the existence of an association between quality of life and the quality of support. The sample consisted of 39 parents of children with autism and 28 parents of children of typical development, fom both genders. To assess the subjective quality of life of parents, a short version of the Brunnsviken Brief Quality of Life Scale was used, while the quality of available support was measured using a scale specifically constructed for the purposes of this research. The results indicated that during the state of emergency, parents of typically developing children received better support from the health system and had more free time than parents of children with autism. In terms of quality of life, no statistically significant differences were found between the two groups of parents in any of the examined areas, nor in the overall quality of life. No association between quality of life and the quality of available support was found for either group of parents. The obtained results highlight the need to address the specific needs of families of children with autism in times of uncertainty, such as during a pandemic. These findings can inform future interventions aimed at providing support that is better aligned with the needs of both children and parents in similar circumstances.
References
Шимоњи Чернак, Р. Ј., Марић, М. Р. и Бељански, М. Б. (2022). Процена наставе на даљину на ТВ-у од стране родитеља у току пандемије изазване вирусом ковид 19. Зборник радова Филозофског факултета у Приштини, 52 (1), 353–371. https://doi.org/10.5937/zrffp52-29848
Alhuzimi, T. (2021). Stress and emotional well-being of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia. Research in Developmental Disabilities, 108(4), Article 103822. https://doi.org/10.1016/j.ridd.2020.103822
Althiabi, Y. (2021). Attitude, anxiety and perceived mental health care needs among parents of children with Autism Spectrum Disorder (ASD) in Saudi Arabia during COVID-19 pandemic. Research in Developmental Disabilities, 111, Article 103873. https://doi.org/10.1016/j.ridd.2021.103873
Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2021). How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families?. Journal of Autism and Developmental Disorders, 51(5), 1772–1780. https://doi.org/10.1007/s10803-020-04577-2
Bentenuto, A., Mazzoni, N., Giannotti, M., Venuti, P., & de Falco, S. (2021). Psychological impact of Covid-19 pandemic in Italian families of children with neurodevelopmental disorders. Research in Developmental Disabilities, 109, Article 103840. https://doi.org/10.1016/j.ridd.2020.103840
Berard, M., Rattaz, C., Peries, M., Loubersac, J., Munir, K., & Baghdadli, A. (2021). Impact of containment and mitigation measures on children and youth with ASD during the COVID-19 pandemic: Report from the ELENA cohort. Journal of Psychiatric Research, 137, 73–80. https://doi.org/10.1016/j.jpsychires.2021.02.041
Chafouleas, S. M., & Iovino, E. A. (2021). Comparing the initial impact of COVID-19 on burden and psychological distress among family caregivers of children with and without developmental disabilities. School Psychology, 36(5), 358–366. https://doi.org/10.1037/spq0000426
Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). Psychosocial and behavioral impact of COVID-19 in Autism Spectrum Disorder: an online parent survey. Brain Sciences, 10, 341. https://doi.org/10.3390/brainsci10060341
Critchley, E., Cuadros, M., Harper, I., Smith-Howell, H., & Rogish, M. (2021). A parent-sibling dyadic interview to explore how an individual with autism spectrum disorder can impact family dynamics. Research in Developmental Disabilities, 111, Article 103884. https://doi.org/10.1016/j.ridd.2021.103884
Cvijetić, M., Marić, M. i Đorđić, D. (2022). Nastava na daljinu u redovnim školama i školama za učenike sa smetnjama u razvoju – komparativna analiza. U: M. Beljanski, M. Cvijetić i D. Đorđić (ur.), Naučna konferencija sa međunarodnim učešćem „Obrazovanje u osnovnoj školi u vreme pandemije” (str. 102–113). Univerzitet u Novom Sadu, Pedagoški fakultet u Somboru.
Ćalasan, S., Mastilo, B., Vuković, B. i Zečević, I. (2021). Pristupačnost usluga specijalnih edukatora i rehabilitatora za vrijeme pandemije COVID-19 iz perspektivne roditelja. Multidisciplinarni pristupi u edukaciji i rehabilitaciji, 3 (3), 79–86. https://doi.org/10.59519/mper3006
Degli Espinosa, F., Metko, A., Raimondi, M., Impenna, M., & Scognamiglio, E. (2020). A model of support for families of children with autism living in the COVID-19 lockdown: Lessons from Italy. Behavior Analysis in Practice, 13(3), 550–558. https://doi.org/10.1007/s40617-020-00438-7
Ersoy, K., Altin, B., Sarikaya, B. B., & Özkardaş, O. G. (2020). The comparison of impact of health anxiety on dispositional hope and psychological well-being of mothers who have children diagnosed with autism and mothers who have normal children, in Covid-19 pandemic. Sosyal Bilimler Araştırma Dergisi, 9(2), 117–126.
Glumbić, N. i Đorđević, M. (2020). On-line podrška osobama s autizmom, njihovim porodicama i terapeutima tokom vanrednog stanja. Specijalna edukacija i rehabilitacija, 19 (1), 59–70. https://doi.org/10.5937/specedreh19-26342
Kaku, S. M., Chandran, S., Roopa, N., Choudhary, A., Ramesh, J., Somashekariah, S., Kuduvalli, S., Rao, V. S., & Mysore, A. (2021). Coping with autism during lockdown period of the COVID-19 pandemic: A cross-sectional survey. Indian Journal of Psychiatry, 63(6), 568–574. https://doi.org/10.4103/indianjpsychiatry.indianjpsychiatry_344_21
Kaljača, S., Dučić, B., & Cvijetić, M. (2019). Participation of children and youth with neurodevelopmental disorders in after-school activities. Disability and Rehabilitation, 41(17), 2036–2048. https://doi.org/10.1080/09638288.2018.1457092
Lestari, N. E., & Anindya, I. (2021). Does online counseling reduce anxiety in parents of children with autism spectrum disorders during coronavirus disease 2019 pandemic?. Open Access Macedonian Journal of Medical Sciences, 9(G), 66–70. https://doi.org/10.3889/oamjms.2021.6492
Levante, A., Petrocchi, S., Bianco, F., Castelli, I., Colombi, C., Keller, R., Narzisi, A., Masi, G., & Lecciso, F. (2021). Psychological impact of COVID-19 outbreak on families of children with autism spectrum disorder and typically developing peers: An online survey. Brain Sciences, 11(6), 808. https://doi.org/10.3390/brainsci11060808
Lindner, P., Frykheden, O., Forsström, D., Andersson, E., Ljótsson, B., Hedman, E., Andersson, G., & Carlbring, P. (2016). The Brunnsviken Brief Quality of Life Scale (BBQ): Development and psychometric evaluation. Cognitive Behaviour Therapy, 45(3), 182–195. https://doi.org/10.1080/16506073.2016.1143526
Liu, G., Wang, S., Liao, J., Ou, P., Huang, L., Xie, N., He, Y., Lin, J., He, H. G., & Hu, R. (2021). The efficacy of WeChat-based parenting training on the psychological well-being of mothers with children with autism during the COVID-19 pandemic: Quasi-experimental study. JMIR Mental Health, 8(2), Article e23917. https://doi.org/10.2196/23917
Logrieco, M. G., Casula, L., Ciuffreda, G. N, Novello, R. L, Spinelli, M., Lionetti, F., Nicolì, I., Fasolo, M., Giovanni, V., & Stefano, V. (2022). Risk and protective factors of quality of life for children with autism spectrum disorder and their families during the COVID-19 lockdown. An Italian study. Research in Developmental Disabilities, 120, Article 104130. https://doi.org/10.1016/j.ridd.2021.104130
Miniarikova, E., Vernhet, C., Peries, M., Loubersac, J., Picot, M. C., Munir, K., & Baghdadli, A. (2021). Anxiety and depression in parents of children with autism spectrum disorder during the first COVID-19 lockdown: Report from the ELENA cohort. Journal of Psychiatric Research 149, 344–351. https://doi.org/10.1016/j.jpsychires.2021.11.022
Mutluer, T., Doenyas, C., & Aslan Genc, H. (2020). Behavioral implications of the Covid-19 process for Autism Spectrum Disorder, and individuals’ comprehension of and reactions to the pandemic conditions. Frontiers in Psychiatry, 11, Article 561882. https://doi.org/10.3389/fpsyt.2020.561882
Nemedi, A., Đorđević, M. i Glumbić, N. (2021). Prednosti i nedostaci nastave na daljinu iz ugla nastavnika, roditelja i dece s poremećajem iz spektra autizma – pregled istraživanja. U: B. Jablan (ur.), Nacionalni naučni skup „Specijalna edukacija i rehabilitacija u uslovima pandemije Covid 19” (str. 19–23). Univerzitet u Beogradu, Fakultet za specijalnu edukaciju i rehabilitaciju.
Oakley, B., Tillmann, J., Ruigrok, A., Baranger, A., Takow, C., Charman, T., Jones, E., Cusack, J., Doherty, M., Violland, P., Wroczyńska, A., Simonoff, E., Buitelaar, J. K., Gallagher, L., & Murphy, D. G. (2021). COVID-19 health and social care access for autistic people: European policy review. BMJ Open, 11(6), Article e045341. http://dx.doi.org/10.1136/bmjopen-2020-045341
Pachner, O., & Aranyi, G. (2021). Challenges for children and adolescents with autism and their families during the Covid-19 pandemic. Journal of Global Awareness, 2(1), 4.
Pecor, K. W., Barbayannis, G., Yang, M., Johnson, J., Materasso, S., Borda, M., Garcia, D., Garla, V., & Ming, X. (2021). Quality of life changes during the COVID-19 pandemic for caregivers of children with ADHD and/or ASD. International Journal of Environmental Research and Public Health, 18(7), 3667. https://doi.org/10.3390/ijerph18073667
Pisula, E., & Porębowicz-Dörsmann, A. (2017). Family functioning, parenting stress and quality of life in mothers and fathers of Polish children with high functioning autism or Asperger syndrome. PloS One, 12(10), Article e0186536. https://doi.org/10.1371/journal.pone.0186536
Spinelli, M., Lionetti, F., Pastore, M., & Fasolo, M. (2020). Parents’ stress and children’s psychological problems in families facing the COVID-19 outbreak in Italy. Frontiers in Psychology, 11, 1713. https://doi.org/10.3389/fpsyg.2020.01713
Stanković, M., Stojanović, A., Stojanov, J., Stanković, M., Shih, A., & Stanković, S. (2022). The Serbian experience of challenges of parenting children with autism spectrum disorders during the COVID-19 pandemic and the state of emergency with lockdown. European Child & Adolescent Psychiatry, 31, 693–698. https://doi.org/10.1007/s00787-021-01917-0
Thorell, L. B., Skoglund, C., de la Peña, A. G., Baeyens, D., Fuermaier, A. B. M., Groom, M. J., Mammarella, I. C., van der Oord, S., van den Hoofdakker, B. J., Luman, M., Marques de Miranda, D., Siu, A. F. Y., Steinmayr, R., Idrees, I., Soares, L. S., Sörlin, M., Luque, J. L., Moscardino, U. M., Roch, M., Crisci, G., & Christiansen, H. (2022). Parental experiences of homeschooling during the COVID-19 pandemic: Differences between seven European countries and between children with and without mental health conditions. European Child & Adolescent Psychiatry, 31, 649–661. https://doi.org/10.1007/s00787-020-01706-1
Tokatly Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with autism during the COVID-19 pandemic lockdown. Autism, 25(4), 1047–1059. https://doi.org/10.1177/1362361320984317
Ueda, R., Okada, T., Kita, Y., Ozawa, Y., Inoue, H., Shioda, M., Kono, Y., Kono, C., Nakamura, Y., Amemiya, K., Ito, A., Sugiura, N., Matsuoka, Y., Kaiga, C., Shiraki, Y., Kubota, M., & Ozawa, H. (2021). Quality of life of children with neurodevelopmental disorders and their parents during the Coronavirus disease 19 emergency in Japan. Scientific Reports, 11(1), 1–8. https://doi.org/10.1038/s41598-021-82743-x
Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: А systematic review. Research in Autism Spectrum Disorders, 23, 36–49. https://doi.org/10.1016/j.rasd.2015.11.008
White, D. M., Aufderheide-Palk, C., & Gengoux, G. W. (2021). Clinician delivery of virtual pivotal response treatment with children with autism during the COVID-19 pandemic. Social Sciences, 10(11), 414. https://doi.org/10.3390/socsci10110414
White, L. C., Law, J. K., Daniels, A. M., Toroney, J., Vernonia, B., Xiao, S., The SPARK Consortium, Feliciano, P., & Chung, W. K. (2021). Brief report: Impact of COVID-19 on individuals with ASD and their caregivers: A perspective from the SPARK cohort. Journal of Autism and Developmental Disorders, 51, 3766–3773. https://doi.org/10.1007/s10803-020-04816-6
Yılmaz, B., Azak, M., & Şahin, N. (2021). Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review. World Journal of Psychiatry, 11(7), 388–402. https://doi.org/10.5498/wjp.v11.i7.388
The details about the publication policy, including copyright and licensing, are available at: