Psychological health of mothers and siblings of children with autism spectrum disorders during COVID-19 pandemic: new evidence in Italian families
Keywords:
Autism Spectrum Disorder, mothers, siblings, COVID-19, psychological healthAbstract
Background and aim: Psychological challenges are well recognized in families with a child with Autism Spectrum Disorders (ASD). Instead, less is known about the effects of traumatic scenarios, such as COVID-19, on the psychological health of these families. The main aim of this research was to study the psychological health of both mothers and typically developing (TD) siblings of children with ASD during the COVID-19 pandemic. Second, we investigated the relationship between the mothers’ psychological resources and their children psychological well-being.
Methods: The sample included 52 mothers and their children: 15 with one child with ASD and at least one TD child (aged 4-14) (ASD-siblings group) and 37 with one or more TD child (aged 4-14) (TD control group). The data were collected through an online platform; four standardized questionnaires (GAD-7, BDI-II, CD-RISC 25 and CBCL) were administered.
Results: The analyses revealed more internalizing and total behavioral symptoms in the siblings of children with ASD, compared to TD control group. Regarding the mothers, we did not find differences in depression and anxious symptoms between the two groups. However, the results reported a lower level of resilience in the mothers of children with ASD relative to mothers of TD children. Finally, the psychological well-being of the TD children was associated with the level of mothers’ anxiety only in the ASD-siblings group.
Conclusions: Overall, our data show that the COVID-19 outbreak may had been particularly challenging for families of children with ASD, and highlight the importance of intensifying psychological support to families.
References
American Psychiatric Association. Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing; 2013. doi:10.1176/appi.books.9780890425596.
World Health Organization. International statistical classification of diseases and related health problems (11th ed.); 2019.
Zeidan J, Fombonne E, Scorah J, et al. Global prevalence of autism: a systematic review update. Autism Res. 2022; 15(5), 778-790. doi:10.1002/aur.2696.
Narzisi A, Posada M, Barbieri F, et al. Prevalence of autism spectrum disorder in a large italian catchment area: a school-based population study within the ASDEU project. Epidemiol Psychiatr Sci. 2020; 29. doi:10.1017/S2045796018000483.
Ghanouni P, Hood G. Stress, coping, and resiliency among families of individuals with autism: a systematic review. Rev J Autism Dev Disord. 2021; 8, 389-402. doi:10.1007/s40489-021-00245-y.
Watson L, Hanna P, Jones CJ. A systematic review of the experience of being a sibling of a child with an autism spectrum disorder. Clin Child Psychol Psychiatry. 2021; 26(3),734-749. doi:10.1177/13591045211007921.
Bentenuto A, Mazzoni N, Giannotti M, Venuti P, de Falco S. Psychological impact of Covid-19 pandemic in Italian families of children with neurodevelopmental disorders. Res Dev Disabil. 2021; 109, 103840. doi:10.1016/j.ridd.2020.103840.
Critchley E, Cuadros M, Harper I, Smith-Howell H, Rogish MA. Parent-sibling dyadic interview to explore how an individual with Autism Spectrum Disorder can impact family dynamics. Res Dev Disabil. 2021; 111, 103884. doi:10.1016/j.ridd.2021.103884.
Macks RJ, Reeve RE. The Adjustment of non-disabled siblings of children with autism. J Autism Dev Disord. 2007; 37, 1060–1067. doi:10.1007/s10803-006-0249-0.
Cridland EK, Jones SC, Stoyles G, Caputi P, Magee CA. Families living with autism spectrum disorder: roles and responsibilities of adolescent sisters. Focus Autism Other Dev Disabil. 2016; 31(3), 196-207. doi: 10.1177/1088357615583466.
Woodgate RL, Ateah C, Secco L. Living in a world of our own: the experience of parents who have a child with autism. Qual Health Res. 2008; 18(8), 1075-1083. doi:10.1177/1049732308320112.
Hayes S, Watson S. 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. J Autism Dev Disord. 2013; 43, 629-642. doi:10.1007/s10803-012-1604-y.
Australian Bureau of Statistics. National Survey of Mental Health and Wellbeing: Summary of results. 2007 (Cat. No. 4326.0); 2008. http://www.abs.gov.au/ausstats/[email protected]/mf/4330.0.
Kessler RC, Chiu WT, Demler O, Walters EE. Prevalence, severity, and comorbidity of twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Arch Gen Psychiatry. 2005; 62, 617-627. doi:10.1001/archpsyc.62.6.617.
Zerach G, Greene T, Ein-Dor T, Solomon, Z. The relationship between posttraumatic stress disorder symptoms and paternal parenting of adult children among ex-prisoners of war: A longitudinal study. J Fam Psychol. 2012; 26, 274-284. doi:10.1037/a0027159.
Ruscio AM, Weathers FW, King LA, King DW. Male war-zone veterans' perceived relationships with their children: The importance of emotional numbing. J Trauma Stress. 2002; 15,351-357. doi:10.1023/A:1020125006371.
Baker JK, Seltzer MM, Greenberg JS. Longitudinal effects of adaptability on behavior problems and maternal depression in families of adolescents with ASD. J Fam Psychol. 2011; 25,601-609. doi:10.1037/a0024409.
Ekas N, Whitman TL. ASD symptom topography and maternal socioemotional functioning. Am J Intellect Dev Disabil. 2010; 115,234-249. doi:10.1352/1944-7558-115.3.234.
Firat S, Diler, RS, Avci A, Seydaoglu G. Comparison of psychopathology in the mothers of autistic and mentally retarded children. J Korean Med Sci. 2002; 17,679-685. doi:10.3346/jkms.2002.17.5.679.
Machado Junior SB, Celestino MI, Serra JP, Caron J, Pondé, MP. Risk and protective factors for symptoms of anxiety and depression in parents of children with autism spectrum disorder. Dev Neurorehabil. 2016; 19, 146-153. doi:10.3109/17518423.2014.925519.
Cohen LR, Hien DA, Batchelder S. The impact of cumulative maternal trauma and diagnosis on parenting behavior. Child Maltreat. 2008; 13, 27-38. doi:10.1177/1077559507310045.
Bitsika V, Sharpley CF, Bell R. The buffering effect of resilience upon stress, anxiety and depression in parents of a child with an autism spectrum disorder. J Dev Phys Disabil. 2013; 25(5), 533-543. doi:10.1007/s10882-013-9333-5.
Luthar SS, Cicchetti D. The construct of resilience: implications for interventions and social policies. Dev Psychopathol. 2000; 12, 857-885. doi:10.1017/S0954579400004156.
Halstead E, Ekas N, Hastings RP, Griffith GM. Associations between resilience and the well-being of mothers of children with autism spectrum disorder and other developmental disabilities. J Autism Dev Disord. 2018; 48(4), 1108-1121. doi:10.1007/s10803-017-3447-z.
Green L. The well-being of siblings of individuals with autism. ISRN Neurol. 2013; 417194. doi:10.1155/2013/417194.
Thomas S, Reddy K, Sagar J V. Psychosocial issues of siblings of children with autism spectrum disorder. Int J Adv Res. 2015; 3, 119-124. doi:10.1007/s40737-016-0064-7.
Koukouriki E, Soulis SG, Andreoulakis E. Depressive symptoms of autism spectrum disorder children's siblings in Greece: Associations with parental anxiety and social support. Autism. 2021; 25(2), 529-544. doi:10.1177/1362361320966847.
Jokiranta-Olkoniemi E, Cheslack-Postava K, Sucksdorff, D, et al. Risk of psychiatric and neurodevelopmental disorders among siblings of probands with autism spectrum disorders. JAMA Psychiatry, 2016; 73(6), 622-629. doi:10.1001/jamapsychiatry.2016.0495.
Angell M, Meadan H, Stoner J. Experiences of siblings of individuals with autism spectrum disorders. Autism Res Treat. 2012; 949586. doi:10.1155/2012/949586.
Benderix Y, Sivberg B. Siblings' experiences of having a brother or sister with autism and mental retardation: A case study of 14 siblings from five families. J Pediatr Nurs. 2007; 22(5), 410-418. doi:10.1016/j.pedn.2007.08.013.
Chan GWL, Goh ECL. My parents told us that they will always treat my brother differently because he is autistic' - are siblings of autistic children the forgotten ones? J Soc Work Pract. 2014; 28(2), 155-171. doi:10.1080/02650533.2013.844114.
Corsano P, Musetti A, Guidotti L, Capelli F. Typically developing adolescents' experience of growing up with a brother with an autism spectrum disorder. J Intellect Dev Disabil. 2017; 42(2), 151-161. doi:10.3109/13668250.2016.1226277.
Gorjy RS, Fielding A, Falkmer M. "It's better than it used to be": perspectives of adolescent siblings of children with an autism spectrum condition. Child Fam Soc Work. 2017; 22, 1488-1496. doi:10.1111/cfs.12371.
Pavlopoulou G, Dimitriou D. 'I don't live with autism; I live with my sister'. Sisters' accounts on growing up with their preverbal autistic siblings. Res Dev Disabil. 2019; 88, 1-15. doi:10.1016/j.ridd.2019.01.013.
Pavlopoulou G, Dimitriou D. In their own words, in their own photos: adolescent females’ siblinghood experiences, needs and perspectives growing up with a preverbal autistic brother or sister. Res Dev Disabil. 2020; 97, 103556. doi:10.1016/j.ridd.2019.103556.
Petalas MA, Hastings RP, Nash S, Reilly D, Dowey A. The perceptions and experiences of adolescent siblings who have a brother with autism spectrum disorder. J Intellect Dev Disabil. 2012; 37(4), 303-314. doi:10.3109/13668250.2012.734603.
Ward B, Smith Tanner B, Mandleco B, Dyches TT, Freeborn D. Sibling experiences: Living with young persons with autism spectrum disorders. Paediatr Nurs. 2016; 42(2), 69-76. PMID: 27254975.
Petalas MA, Hastings RP, Nash S, Dowey A, Reilly D. "I like that he always shows who he is ": The perceptions and experiences of siblings with a brother with autism spectrum disorder. Int J Disabil Dev Educ. 2009; 56(4), 381-399. doi:10.1080/10349120903306715.
Tsai HWJ, Cebula K, Liang SH, Fletcher-Watson S. Siblings' experience of growing up with children with autism in Taiwan and the United Kingdom. Res Dev Disabil. 2018; 83, 206-216. doi:10.1016/j.ridd.2018.09.001.
Costa TM, da Silva Pereira P. The child with autism spectrum disorder: The perceptions of siblings. Support for Learning. 2019; 34(2), 193-210. doi:10.1111/1467-9604.12248.
World Health Organization. (2020). Coronavirus disease (COVID-19), 12 October 2020.
Lazzerini M, Putoto G. COVID-19 in Italy: momentous decisions and many uncertainties. Lancet Glob Health. 2020; 8(5), e641-e642. doi:10.1016/S2214-109X(20)30110-8.
Romero E, López-Romero L, Domínguez-Álvarez B, Villar P, Gómez-Fraguela JA. Testing the effects of COVID-19 confinement in Spanish children: the role of parents' distress, emotional problems and specific parenting. Int J Environ Res Public Health. 2020; 17(19), 6975. doi:10.3390/ijerph17196975.
Cellini N, Di Giorgio E, Mioni G, Di Riso D. Sleep and psychological difficulties in Italian school-age children during COVID-19 lockdown. J Pediatr Psychol. 2021; 46(2), 153-167. doi:10.1093/jpepsy/jsab003.
Brooks SK, Webster RK, Smith LE, et al. The psychological impact of quarantine and how to reduce it: rapid review of the evidence. Lancet. 2020; 395(10227), 912-920. doi:10.1016/S0140-6736(20)30460-8.
Benassi E, Vallone M, Camia M, Scorza M. Women during the Covid-19 lockdown: more anxiety symptoms in women with children than without children and role of the resilience. MJCP. 2020; 8(3), 1-19. doi:10.6092/2282-1619/mjcp-2559.
Benassi E, Bello A, Camia M, Scorza M. Quality of life and its relationship to maternal experience and resilience during COVID-19 lockdown in children with specific learning disabilities. Eur J Spec Needs Educ. 2022; 37 (4), 632-647. doi:10.1080/08856257.2021.1940005.
Crespo LM, Trentacosta CJ, Aikins D, Wargo-Aikins J. Maternal emotion regulation and children's behavior problems: The mediating role of child emotion regulation. J Child Fam Stud. 2017; 26(10), 2797-2809. doi:10.1007/s10826-017-0791-8.
Hoffman CD, Sweeney DP, Hodge D, Lopez-Wagner MC, Looney L. Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus Autism Other Dev Disabl. 2009; 24(3), 178-187. doi:10.1001/archinte.166.10.1092.
Shorey S, Lau LST, Tan JX, Ng ED, Aishworiya R. Families with children with neurodevelopmental disorders during COVID-19: A scoping review. J. Pediatr. Psychol. 2021; 46(5), 514-525.
Alhuzimi T. Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia. Res Dev Disabil. 2021; 108, 103822. doi:10.1016/j.ridd.2020.103822.
Pecor KW, Barbayannis G, Yang M, et al. Quality of life changes during the COVID-19 pandemic for caregivers of children with ADHD and/or ASD. Int J Environ Res Public Health. 2021; 18(7), 3667. doi:10.3390/ijerph18073667.
Colizzi M, Sironi E, Antonini F, Ciceri ML, Bovo C, Zoccante L. Psychosocial and behavioral impact of COVID-19 in autism spectrum disorder: an online parent survey. Brain Sci. 2020; 10(6), 341. doi:10.3390/brainsci10060341.
Miniarikova E, Vernhet C, Peries M, et al. Anxiety and depression in parents of children with autism spectrum disorder during the first COVID-19 lockdown: Report from the ELENA cohort. J Psychiatr Res. 2022; 149, 344-351. doi:10.1016/j.jpsychires.2021.11.022.
Zhao M, Fu W. The resilience of parents who have children with autism spectrum disorder in China: a social culture perspective. Int J Dev Disabil. 2022; 68(2),207-218. doi:10.1080/20473869.2020.1747761
Scorza M, Benassi E, Gennaro A, Bruganelli C, Stella G. Psychopathological symptoms in Italian children and adolescents with specific learning disorder: what do mothers and fathers report about? BPA-Appl Psychol. 2018; 66(281), 2-14.
Camia M, Benassi E, Padovani R, Scorza M. Relationships between pragmatic abilities, school well-being and psychological health in typically developing children. MJCP. 2021; 9(3). doi:10.13129/2282-1619/mjcp-3179.
International Classification of Diseases and related Health Problems 10th Revision, 2015. Retrieved from http://apps.who.int/ classifications/icd10/browse/2015/en.
Spitzer RL, Kroenke K, Williams JB, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006; 166(10), 1092-1097. doi:10.1001/archinte.166.10.1092.
Beck AT, Steer RA, Brown GK. Manual for the Beck depression inventory-II. San Antonio, TX: Psychological Corporation. 1996. doi:10.1037/t00742-000.
Ghisi M, Flebus GB, Montano A, Sanavio E, Sica C. Beck depression inventory. 2006; Organizzazioni Speciali, Adattamento italiano [Italian].
Connor KM, Davidson JR. Development of a new resilience scale: the Connor-Davidson resilience scale (CD-RISC). Depress Anxiety. 2003; 18(2), 76-82. doi:10.1002/da.10113.
Achenbach TM. Manual for the Child Behavior Checklist/4-18 and 1991 Profile. Burlington, VT: University of Vermont, Department of Psychiatry, 1991.
Achenbach TM, Rescorla LA. Manual for the ASEBA School-age Forms & Profiles, 2001.
Frigerio A, Cattaneo C, Cataldo M, Schiatti A, Molteni M, Battaglia M. Behavioral and emotional problems among Italian children and adolescents aged 4 to 18 years as reported by parents and teachers. Eur J Psychol Assess. 2004; 20(2), 124-133. doi:10.1027/1015-5759.20.2.124.
Johnson SU, Ulvenes PG, Øktedalen T, Hoffart A. Psychometric properties of the general anxiety disorder 7-item (GAD-7) scale in a heterogeneous psychiatric sample. Front Psychol. 2019; 10, 1713. doi:10.3389/fpsyg.2019.01713.
Giannotti M, Mazzoni N, Bentenuto A, Venuti P, de Falco S. Family adjustment to COVID‐19 lockdown in Italy: Parental stress, coparenting, and child externalizing behavior. Fam Process. 2022. 61(2), 745-763. doi:10.1111/famp.12686.
Althiabi Y. Attitude, anxiety and perceived mental health care needs among parents of children with Autism Spectrum Disorder (ASD) in Saudi Arabia during COVID-19 pandemic. Res Dev Disabil. 2021; 111, 103873. doi: 10.1016/j.ridd.2021.103873. https://doi.org/10.1016/j.ridd.2021.103873.
Wang L, Zhang H, Shang C, et al. Mental health issues in parents of children with autism spectrum disorder: A multi‐time‐point study related to COVID‐19 pandemic. Autism Res. 2022; 15(12), 2346-2358. doi:10.1002/aur.2836.
Gardiner E, Mâsse LC, Iarocci G. A psychometric study of the family resilience assessment scale among families of children with autism spectrum disorder. Health Qual Life Outcomes. 2019; 17(1), 1-10 https://doi.org/10.1186/s12955-019-1117-x
Sydsjo G, Agnafors S, Bladh M, Josefsson A. Anxiety in women-A Swedish national three-generational cohort study. BMC Psychiatry. 2018; 18, 168. doi:10.1186/s12888-018-1712-0.
Zablotsky B, Bradshaw CP, Stuart EA. The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. J Autism Dev Disord. 2013; 43:1380–93. doi:10.1007/s10803-012-1693-7.
Krakovich TM, McGrew JH, Yu Y, et al. Stress in parents of children with autism spectrum disorder: an exploration of demands and resources. J Autism Dev Disord. 2016; 46:2042–53. doi:10.1007/s10803-016-2728-2.
Zhou W, Liu D, Xiong X, Xu H. Emotional problems in mothers of autistic children and their correlation with socioeconomic status and the children's core symptoms. Medicine (Baltimore). 2019 Aug;98(32):e16794. doi: 10.1097/MD.0000000000016794.
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