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de Maat DA, Van der Hallen R, de Nijs PFA, Visser K, Bastiaansen D, Truijens FL, van Rijen EHM, Ester W, Prinzie P, Jansen PW, Dekker LP. Children with Autism Spectrum Disorder in Times of COVID-19: Examining Emotional and Behavioral Problems, Parental Well-Being, and Resilience. J Autism Dev Disord 2025; 55:752-763. [PMID: 37213037 PMCID: PMC10201036 DOI: 10.1007/s10803-022-05846-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/21/2022] [Indexed: 05/23/2023]
Abstract
This longitudinal study assessed the impact of the COVID-19 pandemic on children with autism spectrum disorder (ASD; n = 62; Mage = 13 years) by measuring emotional and behavioral problems before and during the pandemic, and by comparing this change to a matched sample of children without ASD (n = 213; Mage = 16 years). Moreover, we examined whether indicators of parental well-being promoted resilience of children with ASD. Results showed that the mean change in problems did not differ between children with and without ASD. Importantly, some children showed an increase in problems, while others showed resilience. Parental well-being indicators were not related to resilience among children with ASD. The interindividual variability in responses, particularly among children with ASD, highlights the need for personalized support.
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Affiliation(s)
- Donna A de Maat
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands.
- The Generation R Study Group, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.
| | - Ruth Van der Hallen
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Pieter F A de Nijs
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands
| | - Kirsten Visser
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Sarr Autism Rotterdam, Youz Child and Adolescent Psychiatry, Parnassia Group, Rotterdam, The Netherlands
| | - Dennis Bastiaansen
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Yulius Center for Child and Adolescent Psychiatry, Dordrecht, The Netherlands
| | - Femke L Truijens
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Elisabeth H M van Rijen
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Wietske Ester
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Sarr Autism Rotterdam, Youz Child and Adolescent Psychiatry, Parnassia Group, Rotterdam, The Netherlands
- Child and Adolescent Psychiatry, Curium-LUMC, Oegstgeest, The Netherlands
- Parnassia Bavo Group, Parnassia Bavo Academy, The Hague, The Netherlands
| | - Peter Prinzie
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands
| | - Pauline W Jansen
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands
- The Generation R Study Group, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands
| | - Linda P Dekker
- Department of Psychology, Education, and Child Studies, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3000 DR, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
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Ye F, Hou X, Chen J, Qin H, Xu X, Liu D, Liu J, Sun Q, Liu H, Hu F, Zhou Y, Xu P, Zhang Q. Behavioral Changes During COVID-19 Omicron Variant Infection on Children with Autism Spectrum Disorder in China. Psychol Res Behav Manag 2024; 17:3979-3991. [PMID: 39588181 PMCID: PMC11586494 DOI: 10.2147/prbm.s470038] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/28/2024] [Accepted: 10/18/2024] [Indexed: 11/27/2024] Open
Abstract
PURPOSE The objective of this study was to investigate the behavioral changes in the core features and challenging behaviors of children with Autism Spectrum Disorder (ASD) during the COVID-19 Omicron wave (from December 2022 to January 2023) in China. PATIENTS AND METHODS A total of 515 caregivers of children with ASD completed an online survey. This survey was designed to assess the sociodemographic characteristics of the children and their caregivers, the clinical features of COVID-19, the manifestation of core ASD features and challenging behaviors, and the alterations in daily life following the COVID-19 Omicron variant wave. RESULTS The children with ASD had an average age of 5.4 years, with 79.6% being male. After the Omicron wave, the proportions of participants with worsening core ASD features and challenging behaviors were 22.9% and 37.1%, respectively. Sleep disorders (20.0%), eating problems (18.6%), and inattentive symptoms (17.5%) were the most frequently reported worsening behaviors. The factors associated with the worsening of core ASD features included infection with the Omicron variant of COVID-19, reduced outdoor activity, and a lower score of caregiver health-related quality of life (HRQoL). The worsening of challenging behaviors was associated with infection with the Omicron variant of COVID-19, a lower frequency of rehabilitation training, and a lower score of HRQoL. CONCLUSION The outbreak of the COVID-19 Omicron variant had an impact on the behaviors of autistic children. The behavior changes in core ASD features and challenging behaviors differed and were associated with COVID-19 infection and other factors.
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Affiliation(s)
- Fang Ye
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Xiaonan Hou
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Jie Chen
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Hui Qin
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Xiaojing Xu
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Die Liu
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Jing Liu
- Graduate School of Peking Union Medical College, Chinese Academy of Medical Sciences, Beijing, People’s Republic of China
| | - Qi Sun
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Haiyan Liu
- Department of Pediatrics, The Second Affiliated Hospital of Xi’an Jiaotong University, Xi an, People’s Republic of China
| | - Fang Hu
- Guangzhou Women and Children’s Medical Center, Guangzhou Medical University, Guangzhou, 510623, People’s Republic of China
| | - Yuwan Zhou
- Department of Prevention Care, The First People’s Hospital of Yunnan Province, The Affiliated Hospital of Kunming University of Science and Technology, Kunming, Yunnan, People’s Republic of China
| | - Pengfei Xu
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
| | - Qi Zhang
- Department of Pediatrics, China-Japan Friendship Hospital, Beijing, People’s Republic of China
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Mpaka DM, Lukusa L, Muchanga SMJ, Vogels A, Ndjukendi AO, Mutonji AB, Kavira DL, Nzuzi JM, Matonda-Ma-Nzuzi T, Mampunza SMM, Mukau JE. Determinants of Positive Evolution of Symptoms in Children with Autism Spectrum Disorders (ASD) during the COVID-19 Lockdown in the Democratic Republic of Congo. (DRC). J Autism Dev Disord 2024:10.1007/s10803-024-06621-x. [PMID: 39556297 DOI: 10.1007/s10803-024-06621-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/16/2024] [Indexed: 11/19/2024]
Abstract
Lockdown imposed by the COVID 19 pandemic increased the time families spent together at home. A negative impact of the lock-down on children with autism has been reported. Few studies described the positive impact of parents' presence on the severity of their children's autism symptoms during lockdown. To describe the positive impact of the COVID-19 lockdown on the evolution of Children' Symptoms with autism and parents' emotional status and to determine which variables had a positive or negative impact on the severity of autism features in Kinshasa. From April 15 to July 15, 2020, we analyzed the evolution of core symptoms of 68 children with autism and correlated these findings with the presence of a parent at home during lockdown. We performed multivariate logistic regression to assess the factors associated to autism symptoms improvement after adjustment by sex, age at ASD diagnosis, education, parent occupation, child's occupancy time, presence of parent's depression, and presence of comorbidities and core symptoms in children. Parents reported ASD symptom improvement in 42.6% of children. Factors positively associate with ASD symptoms improvement were presence of a parent for more than 8 h per day, improvement of social communication and autonomy. In contrast, severe to moderate depression in parents and presence of main comorbidities in children were associated with more severe autistic symptoms in their children. The presence of a parent at home, improved child communication and autonomy improved autism symptoms. On the other hand, parental depression and comorbidities in children with ASD aggravated the symptoms during lockdown in Kinshasa/DRC. These findings emphasize the importance of the physical presence of parents as well as the length of time they spend with their children with ASD. In addition, they show that depressive feelings in parents and comorbidities in ASD have a negative impact in the severity of their symptoms during lockdown.
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Affiliation(s)
- Davin Mbeya Mpaka
- Department of Psychiatry, the Neuro-Psycho-Pathological Center, University of Kinshasa, Democratic Republic of Congo (DRC), P.O. Box: 825, Kinshasa, XI DRC, Congo.
| | - Luck Lukusa
- Research Institute of the McGill University Health Centre (RI-MUHC), Montreal, Canada
| | | | - Annick Vogels
- Centre of Human Genetics, University Hospital of Leuven, Leuven, Belgium
| | - Ally Omba Ndjukendi
- Department of Psychiatry, the Neuro-Psycho-Pathological Center, University of Kinshasa, Democratic Republic of Congo (DRC), P.O. Box: 825, Kinshasa, XI DRC, Congo
| | - Arsene Bukama Mutonji
- Institut Supérieur de Statistique de Lubumbashi, (ISS-L'shi), Lubumbashi, Democratic Republic of Congo
| | | | - Julienne Managa Nzuzi
- Department of Psychiatry, the Neuro-Psycho-Pathological Center, University of Kinshasa, Democratic Republic of Congo (DRC), P.O. Box: 825, Kinshasa, XI DRC, Congo
| | - Thierry Matonda-Ma-Nzuzi
- Department of Psychiatry, the Neuro-Psycho-Pathological Center, University of Kinshasa, Democratic Republic of Congo (DRC), P.O. Box: 825, Kinshasa, XI DRC, Congo
| | - Samuel Ma-Miezi Mampunza
- Department of Psychiatry, the Neuro-Psycho-Pathological Center, University of Kinshasa, Democratic Republic of Congo (DRC), P.O. Box: 825, Kinshasa, XI DRC, Congo
| | - Joachim Ebwel Mukau
- Department of Psychology, Centre d'Evaluation et d'Intervention pour Enfants avec Handicap Mental et/ou Autisme (CEIEHMA), The National University of Education (UPN), Kinshasa, Democratic Republic of Congo
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Tawankanjanachot N, Melville C, Truesdale M, Kidd L. An online survey of perspectives towards the impact of the covid-19 pandemic amongst caregivers of adolescents with ASD. BMC Nurs 2024; 23:830. [PMID: 39543635 PMCID: PMC11566215 DOI: 10.1186/s12912-024-02492-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/23/2024] [Accepted: 11/04/2024] [Indexed: 11/17/2024] Open
Abstract
BACKGROUND The coronavirus disease (COVID-19) pandemic has had a negative impact on the health and mental health of adolescents and adolescents with autism spectrum disorders (ASD) and their caregivers, have been disproportionally affected. The purpose of this study was to investigate the impact of COVID-19 on Thai caregivers and adolescents with ASD. METHODS This study used an online survey with closed and free text questions to investigate how the pandemic had impacted on social skills development and psychological variables, and perceived needs for support. The survey link was shared to parents via the Yuwaprasart Withayopathum Child and Adolescent Hospital and the social media platforms of known ASD stakeholder networks in Thailand. Binary logistic regression was used to investigate the relationships between sociodemographic characteristics, service use, and social skills problems experienced by adolescents during the pandemic. Content analysis was applied to analyse free-text data. RESULTS A total of 376 caregivers of adolescents with ASD aged 10-19 years completed the survey, of which 364 were included in the analysis. In total, 38.7% of caregivers reported that during the pandemic the social skills of their adolescent family member had worsened. Most families reported that they were able to continue to access support from healthcare and educational services, albeit in different ways than pre-pandemic, during the acute stages of the pandemic which benefited the maintenance of ASD symptoms and social skills. Factors identified as reducing the odds of a worsening in social skills during the pandemic included; regular access to treatment for adolescents (odds ratio [OR] = 0.55, confidence interval 95% (CI) 0.32-0.98, p = 0.044), caregivers feeling that they had sufficient support from hospitals (OR = 0.46, 95% CI 0.26-0.81, p = 0.007) and older age of adolescents (OR = 0.53, CI 0.29-0.99, p = 0.047). The qualitative free text comments showed that the caregivers felt that greater information on managing adolescent behaviours, opportunities for adolescents to practice social skills, and the provision of greater emotional support and material assistance from healthcare professionals during the pandemic would have helped them to care for the adolescents with ASD. CONCLUSION Regular access to services, support from hospitals during the pandemic and older age in adolescence may have helped prevent the worsening of the social skills problems of adolescents with ASD.
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Affiliation(s)
- Nadlada Tawankanjanachot
- School of Medicine, Dentistry & Nursing, College of Medical, Veterinary & Life Sciences, University of Glasgow, Glasgow, G12 9LL, UK
- Ramathibodi School of Nursing, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Bangkok, Thailand
| | - Craig Melville
- School of Health and Wellbeing, College of Medical, Veterinary & Life Sciences, University of Glasgow, Glasgow, G12 0XH, UK
| | - Maria Truesdale
- School of Health and Wellbeing, College of Medical, Veterinary & Life Sciences, University of Glasgow, Glasgow, G12 0XH, UK
| | - Lisa Kidd
- School of Health & Life Sciences/Research Centre for Health, Glasgow Caledonian University, Glasgow, G4 OBA, UK.
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Plak R, Rippe R, Merkelbach I, Begeer S. Psychosocial Outcomes in Autistic Children Before and During the COVID-19 Pandemic. J Autism Dev Disord 2024; 54:3670-3683. [PMID: 37690082 PMCID: PMC11461758 DOI: 10.1007/s10803-023-06101-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 08/05/2023] [Indexed: 09/12/2023]
Abstract
Studies on the impact of the COVID-19 pandemic on autistic children's psychosocial outcomes have shown mixed results. In the current study we aimed to gain a better insight into the effect of the COVID-19 pandemic by comparing psychosocial outcomes collected pre-pandemic with data collected during the pandemic. We used the Strengths and Difficulties Questionnaire (SDQ) to examine change over time in psychosocial outcomes of autistic children from pre-pandemic (T0) to lockdown I (T1) and lockdown II (T2) in the Netherlands. We expected a deterioration in psychosocial outcomes. There were 224 participants in T0 and T1, of which 141 also participated in T2. The results showed a surprising improvement in psychosocial outcomes from T0 to T1. Special education and female gender were associated with increased difficulties over time, while higher age was associated with decreased difficulties. At the subdomain level we found that emotional problems remained stable, while hyperactivity, conduct problems, and peer problems decreased, and prosocial behavior increased. Attending special education predicted increased peer problems over time, while higher age predicted both decreased conduct problems and increased prosocial behavior over time. The COVID-19 pandemic may have temporarily improved the fit between the psychosocial needs and the environment for children with autism in the Netherlands.
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Affiliation(s)
- Rachel Plak
- Clinical Neurodevelopmental Sciences, Institute of Education and Child Studies, Faculty of Social and Behavioral Sciences, Leiden University, Leiden, The Netherlands.
| | - Ralph Rippe
- Research Methods and Statistics, Institute of Education and Child Studies, Faculty of Social and Behavioral Sciences, Leiden University, Leiden, The Netherlands
| | - Inge Merkelbach
- Erasmus School of Social and Behavioural Sciences, Erasmus University Rotterdam, Rotterdam, The Netherlands
| | - Sander Begeer
- Department of Clinical, Neuro- & Developmental Psychology, Faculty of Behavioural and Movement Sciences, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
- Amsterdam Public Health Research Institute, Amsterdam, The Netherlands
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Berson J, Adams SN. Experiences of caregivers of children with autism during the COVID-19 pandemic: A scoping review. SOUTH AFRICAN JOURNAL OF COMMUNICATION DISORDERS 2024; 71:e1-e12. [PMID: 39099285 PMCID: PMC11304107 DOI: 10.4102/sajcd.v71i1.1017] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/02/2023] [Revised: 03/28/2024] [Accepted: 04/05/2024] [Indexed: 08/06/2024] Open
Abstract
BACKGROUND The coronavirus disease 2019 (COVID-19) outbreak has had a profoundly negative impact on people all over the world, particularly those with disabilities such as autism. However, there are gaps in research understanding the impact of COVID-19 on this population and the support required. AIM To explore the evidence available on the impact of the COVID-19 pandemic on caregivers of children with autism. METHOD A scoping review methodology using the Arksey and O'Malley framework was employed. Five electronic databases from March 2020 to December 2022 were reviewed. Two thousand two hundred and six articles were retrieved with primary search terms: caregivers (population), autism (diagnosis) and COVID-19 (context). Following the screening of titles, abstracts and articles, 36 articles were included in the final review. Thematic and content qualitative analysis was completed. RESULTS Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) guided the reporting of the findings. Three main themes were identified: (1) caregiver's mental health and wellbeing, (2) response to remote health care and support and (3) caregiver resilience. CONCLUSION The pandemic affected children with autism and their families regarding changes in routine, difficulties with support and emotional states. However, little research has been conducted on the impact in upper-middle-income countries such as South Africa.Contribution: The findings from this review carry practical implications that extend beyond the pandemic, such as political instability or natural disasters that may present similar stressors for children with autism and their families.
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Affiliation(s)
- Jade Berson
- Department of Speech Pathology and Audiology, School of Human and Community Development, University of the Witwatersrand, Johannesburg.
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Katalifos A, Elsabbagh M, Yusuf A, Yamaguchi S, Scorah J, Wright N, Steiman M, Shih A, Shikako K. Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities. FRONTIERS IN REHABILITATION SCIENCES 2024; 5:1308062. [PMID: 38590546 PMCID: PMC10999642 DOI: 10.3389/fresc.2024.1308062] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/06/2023] [Accepted: 03/12/2024] [Indexed: 04/10/2024]
Abstract
Introduction The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers' experiences can promote the development of tailored public supports for these families following a public health crisis. Methods Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families' and youths' experiences during the same period. Results Five hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths' regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators. Conclusion Prioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape.
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Affiliation(s)
- Anna Katalifos
- Azrieli Centre for Autism Research, Montreal Neurological Hospital-Institute, McGill University Health Centre, Montreal, QC, Canada
- Department of Neurology and Neurosurgery, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Mayada Elsabbagh
- Azrieli Centre for Autism Research, Montreal Neurological Hospital-Institute, McGill University Health Centre, Montreal, QC, Canada
- Department of Neurology and Neurosurgery, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Afiqah Yusuf
- Azrieli Centre for Autism Research, Montreal Neurological Hospital-Institute, McGill University Health Centre, Montreal, QC, Canada
- Department of Neurology and Neurosurgery, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Sakiko Yamaguchi
- School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Julie Scorah
- Azrieli Centre for Autism Research, Montreal Neurological Hospital-Institute, McGill University Health Centre, Montreal, QC, Canada
- Department of Neurology and Neurosurgery, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Nicola Wright
- Department of Psychology, Faculty of Health, Psychology, and Social Care, Manchester Metropolitan University, Manchester, United Kingdom
| | - Mandy Steiman
- Azrieli Centre for Autism Research, Montreal Neurological Hospital-Institute, McGill University Health Centre, Montreal, QC, Canada
- Department of Neurology and Neurosurgery, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
| | - Andy Shih
- Scientific Affairs, Autism Speaks, New York, NY, United States
| | - Keiko Shikako
- School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
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Eroglu M, Efendi GY, Temelturk RD, Yaksi N. Living on with autism after a devastating earthquake: experiences of children and adolescents in Turkey. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2024; 70:766-776. [PMID: 38983491 PMCID: PMC11229709 DOI: 10.1080/20473869.2023.2301184] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/08/2023] [Accepted: 12/23/2023] [Indexed: 07/11/2024]
Abstract
Introduction The current study aimed to investigate the psychological impact of the Turkey 2023 earthquakes on children with autism spectrum disorder (ASD) and their parents residing in Hatay, Sanlıurfa, and Ankara provinces, encompassing the periods both before and after the Turkey 2023 earthquakes. Method This cross-sectional, multicenter study included 103 children and adolescents with ASD aged between 6 and 18. Participants were evaluated based on their residence in Ankara, Hatay, and Sanlıurfa, three cities affected differently by the earthquake. Parent-report questionnaires were utilized to assess the children's autism symptoms and behavioural problems. The Childhood Autism Rating Scale was used to determine autism severity. The psychiatric problems of mothers were also assessed with self-report scales. Results Significantly increased levels of core autism symptoms, irritability, and hyperactivity were found in Hatay and Sanlıurfa participants after the earthquakes compared to before, while no differences were detected in children from the Ankara group. Scale score increases in the Hatay group, which had to take a more extended break from special education, were higher than in the Sanlıurfa group. Participants with late-diagnosed ASD exhibited a more significant increase in their scale scores after the earthquake. Depression, stress and hopelessness scores were the highest, and the life satisfaction levels were the lowest in mothers of the Hatay and Sanlıurfa groups. More pronounced increases were observed in aberrant behaviours among children of mothers with low educational levels following the earthquake. Discussion Our findings demonstrate that the exacerbation of core ASD symptoms and behavioural deterioration after the earthquakes are associated with disruptions in specialized education services, exposure to earthquake-related trauma, and the educational level of mothers.
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Affiliation(s)
- Mehtap Eroglu
- Department of Child and Adolescent Psychiatry, Hatay Training and Research Hospital, Hatay, Turkey
| | - Gokce Yagmur Efendi
- Department of Child and Adolescent Psychiatry, Sanlıurfa Mehmet Akif Inan Training and Research Hospital, Sanlıurfa, Turkey
| | - Rahime Duygu Temelturk
- Department of Child and Adolescent Psychiatry, Ankara University School of Medicine, Ankara, Turkey
| | - Nese Yaksi
- Department of Public Health, Amasya University School of Medicine, Amasya, Turkey
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Failla C, Chilà P, Vetrano N, Doria G, Scarcella I, Minutoli R, Gismondo S, Pioggia G, Marino F. From crisis to opportunity: integrating insights from COVID-19 into the autism research. Front Psychiatry 2024; 15:1341737. [PMID: 38404473 PMCID: PMC10884285 DOI: 10.3389/fpsyt.2024.1341737] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/20/2023] [Accepted: 01/17/2024] [Indexed: 02/27/2024] Open
Affiliation(s)
- Chiara Failla
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
- Classical Linguistic Studies and Education Department, Kore University of Enna, Enna, Italy
| | - Paola Chilà
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
- Faculty of Psychology, International Telematic University Uninettuno, Roma, Italy
| | - Noemi Vetrano
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
- Department of Cognitive, Psychological Science and Cultural Studies, University of Messina, Messina, Italy
| | - Germana Doria
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
- Faculty of Psychology, International Telematic University Uninettuno, Roma, Italy
| | - Ileana Scarcella
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
- Faculty of Psychology, International Telematic University Uninettuno, Roma, Italy
| | - Roberta Minutoli
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
- Faculty of Psychology, International Telematic University Uninettuno, Roma, Italy
| | - Stefania Gismondo
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
| | - Giovanni Pioggia
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
| | - Flavia Marino
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy (CNR), Messina, Italy
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Milea-Milea AC, Fernández-Pérez D, Toledano-González A. The psychological impact of the COVID-19 pandemic on children/adolescents with ASD and their family environment: a systematic review. Eur Child Adolesc Psychiatry 2024; 33:203-228. [PMID: 36757483 PMCID: PMC9909131 DOI: 10.1007/s00787-023-02151-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/12/2022] [Accepted: 01/26/2023] [Indexed: 02/10/2023]
Abstract
The main objective of the review is to analyze the impact of the pandemic in children/teenagers with Autism spectrum disorder (ASD) and in their family environment. An electronic search was carried out in different databases (PsycInfo, Web of Science and Scopus) in order to find publications associated with the aim of this project. The search terms used were derived from the combination of the following search string: "((Pandemic OR Epidemic OR Outbreak OR COVID-19 OR Coronavirus) AND (Children OR Adolescents OR Youth OR Child OR Teenager) AND (Autism OR ASD OR Autism Spectrum Disorder))''. In total, 21 articles were included in this review. The findings of the different investigations included in this review show that the pandemic has produced a negative psychological impact in children/teenagers with ASD. Therefore, long-term follow-up studies should be carried out with the objective of creating effective interventions to treat this problematical.
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Affiliation(s)
| | - Dolores Fernández-Pérez
- Department of Psychology, Faculty of Medicine, University of Castilla-La Mancha, Albacete, Spain.
- Neurological Disabilities Research Institute, Albacete, Spain.
| | - Abel Toledano-González
- Department of Psychology, Faculty of Health Sciences, University of Castilla-La Mancha, Talavera de la Reina, Spain
- Neurological Disabilities Research Institute, Albacete, Spain
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11
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Gerber AH, Keluskar J, Lerner MD. Longitudinal Impact of the Pandemic on Social Disruption and Loneliness in Autistic and Non-Autistic Youth. JOURNAL OF CLINICAL CHILD AND ADOLESCENT PSYCHOLOGY : THE OFFICIAL JOURNAL FOR THE SOCIETY OF CLINICAL CHILD AND ADOLESCENT PSYCHOLOGY, AMERICAN PSYCHOLOGICAL ASSOCIATION, DIVISION 53 2023:1-13. [PMID: 37956102 PMCID: PMC11089075 DOI: 10.1080/15374416.2023.2272933] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/15/2023]
Abstract
OBJECTIVE The coronavirus pandemic drastically increased social isolation. Autistic youth already experience elevated social isolation and loneliness, making them highly vulnerable to the impact of the pandemic. We examined trajectories of social disruption and loneliness in autistic and non-autistic youth during a six-month period of the pandemic (June 2020 until November 2020). METHOD Participants were 76 youth, ages 8 through 17, (Mage = 12.82, Nautistic = 51) with an IQ ≥ 70. Youth completed a biweekly measure of loneliness (Revised UCLA Loneliness Scale) and their parent completed a measure of pandemic-related family social disruption (Epidemic Pandemic Impacts Inventory). RESULTS There were no time trends in loneliness across all youth, however, social disruption displayed linear, quadratic, and cubic trends. Non-autistic youth reported relatively greater declines in social disruption compared to autistic youth. Additionally, autistic youth reported relatively greater declines in loneliness relative to non-autistic youth. Greater social disruption was associated with higher loneliness, however, autistic youth demonstrated a relatively stronger relationship between social disruption and loneliness compared to non-autistic youth. CONCLUSIONS The current study was one of the first to investigate social disruption and loneliness in autistic youth during the COVID-19 pandemic. Results indicated that autistic youth experienced relative decreases in loneliness during this time, perhaps due to reductions in social demands. Nonetheless, when autistic youth did experience social disruption, they reported relatively higher levels of loneliness. This work contributes to our understanding of risk factors for loneliness and highlights the need to understand the benefits, as well as the challenges, to remote schooling and social interactions.
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Affiliation(s)
- Alan H. Gerber
- Department of Psychology, Stony Brook University, Stony Brook, NY
- Child Study Center, Yale School of Medicine, New Haven, CT
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12
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Courreges A, Kouros CD, Ekas NV, Levy S. Remote vs. In-person Schooling during the COVID-19 Pandemic and Internalizing Symptoms among Children on the Autism Spectrum. RESEARCH IN AUTISM SPECTRUM DISORDERS 2023; 109:102284. [PMID: 38009124 PMCID: PMC10673621 DOI: 10.1016/j.rasd.2023.102284] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/28/2023]
Abstract
Background Children on the autism spectrum encountered interruptions to their education due to the COVID-19 pandemic (White et al., 2021). This study examined the extent to which autistic children's anxiety and depressive symptoms during the pandemic were associated with the school format they attended in October 2020 (remote, in-person/hybrid, homeschool), controlling for their pre-pandemic symptoms. Pre-pandemic peer victimization and autism symptom characteristics were tested as moderators. Method Participants were 81 verbally-fluent autistic children (Mage = 14.71 years, 77.8% males), without an intellectual disability, and their mothers; families were part of an ongoing, longitudinal study that began before the pandemic. Results School format did not significantly predict children's anxiety or depressive symptoms. Results indicated that the only significant predictors of children's anxiety and depressive symptoms during the pandemic were their pre-pandemic symptom levels. Conclusions School format did not significantly contribute to variability in children's anxiety and depressive symptoms during the pandemic, over and above their pre-pandemic symptoms. The results contribute quantitative findings to the growing body of research on pandemic-related effects on autistic children, and underscore the need to account for pre-pandemic child functioning when drawing conclusions about pandemic-level effects.
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Affiliation(s)
- Audrey Courreges
- Department of Psychology, Southern Methodist University, PO Box 750442, Dallas, TX, 75275, USA
| | - Chrystyna D. Kouros
- Department of Psychology, Southern Methodist University, PO Box 750442, Dallas, TX, 75275, USA
| | - Naomi V. Ekas
- Department of Psychology, Texas Christian University, TCU Box 298920, Fort Worth, TX, 76129, USA
| | - Sam Levy
- Department of Psychology, Southern Methodist University, PO Box 750442, Dallas, TX, 75275, USA
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13
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Xie H, Waschl N, Zeng S. Measuring family outcomes for young autistic children receiving interventions in China: The structure of the Family Outcomes Survey and predicting variables. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2023; 27:2048-2062. [PMID: 36823989 DOI: 10.1177/13623613231152563] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/25/2023]
Abstract
LAY ABSTRACT Efforts to measure, document, and monitor family outcomes can be helpful to practitioners in developing and delivering effective and sustainable interventions. Researchers have developed the Family Outcomes Survey, Form A, for measuring the outcomes experienced by families of children in the early intervention/early childhood special education system. Little has been reported on how well the five outcomes on the Family Outcomes Survey, Form A describe the experiences and expectations of families of autistic children in China. We conducted a survey using the Family Outcomes Survey, Form A, Chinese version with 467 caregivers of young autistic children in China. First, the five-outcome structure of the Family Outcomes Survey, Form A seemed to be appropriate for measuring family outcomes of autistic children in China. We also found that the Chinese caregivers of autistic children seemed to give general lower ratings on all five outcomes on the Family Outcomes Survey, Form A as compared to caregivers of children in early intervention/early childhood special education in Western countries like the United States and Australia. Furthermore, caregivers' ratings on the five Family Outcomes Survey, Form A outcomes seemed to be related to their educational attainment, employment status, family income level, and how much time caregivers spent with their autistic child. This study supported the use of the Family Outcomes Survey, Form A, Chinese version with families of autistic children in China. We also discussed how the coronavirus disease 2019 pandemic could have impacted the family outcomes as reported by the Chinese caregivers.
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14
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Aljaberi MA, Al-Sharafi MA, Uzir MUH, Sabah A, Ali AM, Lee KH, Alsalahi A, Noman S, Lin CY. Psychological Toll of the COVID-19 Pandemic: An In-Depth Exploration of Anxiety, Depression, and Insomnia and the Influence of Quarantine Measures on Daily Life. Healthcare (Basel) 2023; 11:2418. [PMID: 37685451 PMCID: PMC10487588 DOI: 10.3390/healthcare11172418] [Citation(s) in RCA: 4] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/13/2023] [Revised: 08/11/2023] [Accepted: 08/17/2023] [Indexed: 09/10/2023] Open
Abstract
The COVID-19 pandemic, on a global scale, has prompted multifaceted challenges, including a notable psychological toll on the general population. This study uses mixed-method approach for a nuanced exploration of these experiences. Using a phenomenological strategy, qualitative responses from 999 participants were analyzed regarding their pandemic-induced anxiety and the influence of quarantine measures on their lives. Quantitative measures, including the revised Impact of Event Scale (IES-R), patient health questionnaire-9 (PHQ-9), the seven-item generalized anxiety disorder assessment (GAD-7), and Insomnia Severity Index (ISI), were used to quantify trauma, depression, anxiety, and insomnia attributed to COVID-19. Partial least squares structural equation modeling (PLS-SEM) was utilized for quantitative data analysis. The anxiety-related responses were mainly clustered into four themes: life threats, support shortage, economic consequences, and disruptions to family and social life. Subthemes that addressed the perceived effects encapsulated disruptions to academic and professional lives, familial and social relationships, psychopathological stress, and movement limitations. The findings from quantitative analysis revealed the significant associations between COVID-19-related trauma and symptoms of anxiety, depression, and insomnia, as indicated by coefficients exceeding 0.10 (all z-values > 1.96; p-values < 0.05). In conclusion, the findings underscore COVID-19's role in escalating anxiety, influenced by various factors, and its disruptive effects on daily life due to quarantine measures. The strong associations between the pandemic and the symptoms of depression, anxiety, and insomnia underscore the urgency of comprehensive psychological and public health interventions to alleviate these impacts.
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Affiliation(s)
- Musheer A. Aljaberi
- Faculty of Medicine and Health Sciences, Taiz University, Taiz 6803, Yemen
- Faculty of Nursing and Applied Sciences, Lincoln University College, Petaling Jaya 47301, Malaysia
- Department of Community Health, Faculty of Medicine & Health Sciences, Universiti Putra Malaysia, Serdang 43300, Malaysia;
| | - Mohammed A. Al-Sharafi
- Institute of Informatics and Computing in Energy, Universiti Tenaga Nasional, Putrajaya Campus, Kajang 43000, Malaysia;
| | - Md. Uzir Hossain Uzir
- Faculty of Business and Accountancy, Lincoln University College, Petaling Jaya 47301, Malaysia;
| | - Aiche Sabah
- Faculty of Human and Social Sciences, Hassiba Benbouali University of Chlef, Chlef 02076, Algeria;
| | - Amira Mohammed Ali
- Department of Psychiatric Nursing and Mental Health, Faculty of Nursing, Alexandria University, Smouha, Alexandria 21527, Egypt;
| | - Kuo-Hsin Lee
- Department of Emergency Medicine, E-Da Dachang Hospital, I-Shou University, Kaohsiung City 824, Taiwan
- School of Medicine, College of Medicine, I-Shou University, No. 8, Yi-Da Road, Jiao-Su Village, Yan-Chao District, Kaohsiung City 824, Taiwan
| | - Abdulsamad Alsalahi
- Department of Pharmacology, Faculty of Pharmacy, Sana’a University, Sana’a 1247, Yemen;
| | - Sarah Noman
- Department of Community Health, Faculty of Medicine & Health Sciences, Universiti Putra Malaysia, Serdang 43300, Malaysia;
| | - Chung-Ying Lin
- Institute of Allied Health Sciences, College of Medicine, National Cheng Kung University, Tainan 701, Taiwan;
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15
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Simpson K, Adams D. Brief Report: Covid Restrictions had Positive and Negative Impacts on Schooling for Students on the Autism Spectrum. J Autism Dev Disord 2023; 53:2921-2927. [PMID: 35113328 PMCID: PMC8811594 DOI: 10.1007/s10803-022-05451-z] [Citation(s) in RCA: 5] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/19/2022] [Indexed: 11/22/2022]
Abstract
The COVID-19 pandemic (2020) resulted in school closures and changes to school delivery. The aim of this study was to explore how these changes impacted on children on the autism spectrum. As part of an online survey, parents (n = 180) of school-aged children (9.3-16.5 years) on the autism spectrum in Australia were asked an open-ended question on how the COVID-19 pandemic had impacted on their child's education experience. Nearly half (48%) of the parents reported only negative impacts, 26% only positive impacts, 12% a mix of positive and negative impacts, and 9% little or no impact. Parents identified that school restrictions impacted on more than their child's learning. These findings highlight areas to consider when supporting autism-friendly learning.
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Affiliation(s)
- Kate Simpson
- Autism Centre of Excellence, School of Education and Professional Studies, Griffith University, Meadowbrook, Logan QLD, Brisbane, 4131, Australia.
- Griffith Institute for Educational Research, Griffith University, Brisbane, Australia.
| | - Dawn Adams
- Autism Centre of Excellence, School of Education and Professional Studies, Griffith University, Meadowbrook, Logan QLD, Brisbane, 4131, Australia
- Griffith Institute for Educational Research, Griffith University, Brisbane, Australia
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16
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Lievore R, Lanfranchi S, Mammarella IC. Parenting stress in autism: do children's characteristics still count more than stressors related to the COVID-19 pandemic? CURRENT PSYCHOLOGY 2023; 43:1-11. [PMID: 37359637 PMCID: PMC10014138 DOI: 10.1007/s12144-023-04441-3] [Citation(s) in RCA: 4] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/20/2023] [Indexed: 03/15/2023]
Abstract
Parents of children with autism spectrum disorders (ASD) experience higher levels of stress than parents of typically-developing (TD) children, due to differences in their children's emotional functioning. The COVID-19 pandemic exacerbated the cognitive and practical demands on vulnerable populations and their families. The aim of this study was to examine parenting stress levels in parents of children ASD and TD children, considering the children's emotional functioning (i.e., anxiety and cognitive emotion regulation strategies), and stressful life events deriving from the COVID-19 pandemic. The study involved 64 parent-child dyads comprising children from 7 to 16 years old, divided into two groups: 32 (26 M) children and adolescents with ASD but no intellectual disability, and 32 (26 M) with typical development. Our results show that parents of children with ASD reported higher levels of stress, but factors relating to the child and the context had a different influence on parenting stress in the ASD and TD groups. The higher level of parenting stress in the ASD group seemed to relate more to the children's emotional characteristics, while the TD group was more affected by the unpredictable stressful events prompted by COVID-19. Families' mental health should be considered a core aspect of supporting parents having to deal with both their child's emotional adjustment and the challenges of the COVID-19 pandemic.
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Affiliation(s)
- Rachele Lievore
- Department of Developmental and Social Psychology, University of Padova, Via Venezia 8, Padova, 35131 Italy
| | - Silvia Lanfranchi
- Department of Developmental and Social Psychology, University of Padova, Via Venezia 8, Padova, 35131 Italy
| | - Irene C. Mammarella
- Department of Developmental and Social Psychology, University of Padova, Via Venezia 8, Padova, 35131 Italy
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17
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Martínez-Castilla, P, Campos, R, Samson, AC, Van Herwegen, J, Dukes, D. Perceived Anxiety in Family Caregivers of Individuals with Autism Spectrum Disorder, Down Syndrome and Williams Syndrome during the Lockdown of the First COVID-19 Wave in Spain. ACTAS ESPANOLAS DE PSIQUIATRIA 2023; 51:56-64. [PMID: 37218100 PMCID: PMC10803872] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Subscribe] [Scholar Register] [Received: 03/01/2023] [Accepted: 03/01/2023] [Indexed: 05/24/2023]
Abstract
The lockdown during the first wave of COV- ID-19 in Spain has been related to higher levels of anxiety in the general population. However, the emotional impact on Spanish caregivers of individuals with neurodevelopmental disorders (NDD) has not been studied so far.
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Affiliation(s)
| | - R Campos,
- Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain
| | - A. C Samson,
- Institute of Special Education, University of Fribourg, Switzerland
- UCL Institute of Education, United Kingdom
| | - J Van Herwegen,
- Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain
| | - D Dukes,
- UCL Institute of Education, United Kingdom
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18
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Mazzoni N, Bentenuto A, Filosofi F, Tardivo A, Strathearn L, Zarei K, De Falco S, Venuti P, Iandolo G, Giannotti M. Parenting a Child with a Neurodevelopmental Disorder during the Early Stage of the COVID-19 Pandemic: Quantitative and Qualitative Cross-Cultural Findings. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 20:499. [PMID: 36612822 PMCID: PMC9819011 DOI: 10.3390/ijerph20010499] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/01/2022] [Revised: 12/16/2022] [Accepted: 12/21/2022] [Indexed: 06/17/2023]
Abstract
Research during the COVID-19 pandemic has shown a strong relationship between child symptoms, parental stress, and mental health challenges. The pandemic has changed family routines, worsening child symptomatology and parental burden. The aim of this study was to investigate how the magnitude of the perceived changes in child externalizing behavior, parental stress, and discontinuity of therapy-from before to during the COVID-19 pandemic-affected parental mental health during the pandemic. Moreover, we sought to compare these aspects cross-culturally between European countries and the USA. To these purposes, we asked Italian, Spanish, and U.S. parents of children with neurodevelopmental disabilities (NDD) to complete an online survey. Quantitative results showed that increased parental stress may have contributed to a worsening in parental psychological distress, regardless of culture. Moreover, they suggested an indirect effect of child externalizing behaviors on parents' psychological distress via parental stress. Qualitative analyses highlighted that the lack, or discontinuity, of therapeutic activities may have been one of the key contributors to parenting burden during the COVID-19 pandemic. Finally, qualitative results highlighted resilience factors that could have decreased the risk of psychological problems during the pandemic, such as a strong sense of parental efficacy and the ability to adapt to changing family dynamics.
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Affiliation(s)
- Noemi Mazzoni
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
| | - Arianna Bentenuto
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
| | - Fabio Filosofi
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
| | - Angela Tardivo
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
- Observation and Functional Diagnosis Division, PSISE Clinical and Developmental Psychological Service, Calle Albendiego 7, 28029 Madrid, Spain
| | - Lane Strathearn
- Department of Pediatrics, Carver College of Medicine, University of Iowa, Iowa City, IA 52242, USA
- Center for Disabilities and Development, University of Iowa Stead Family Children’s Hospital, Iowa City, IA 52242, USA
- Hawkeye Intellectual and Developmental Disabilities Research Center (Hawk-IDDRC), University of Iowa, Iowa City, IA 52242, USA
| | - Kasra Zarei
- Department of Pediatrics, Carver College of Medicine, University of Iowa, Iowa City, IA 52242, USA
- Center for Disabilities and Development, University of Iowa Stead Family Children’s Hospital, Iowa City, IA 52242, USA
| | - Simona De Falco
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
| | - Paola Venuti
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
| | - Giuseppe Iandolo
- Observation and Functional Diagnosis Division, PSISE Clinical and Developmental Psychological Service, Calle Albendiego 7, 28029 Madrid, Spain
- Department of Psychology, School of Biomedical Sciences, European University of Madrid, Calle Tajo S/N, (Urb. El Bosque), Villaviciosa de Odón (Madrid), 28670 Madrid, Spain
| | - Michele Giannotti
- Laboratory of Observation, Diagnosis and Educational (ODFLAB), Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Trento, Italy
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19
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Bolbocean C, Rhidenour KB, McCormack M, Suter B, Holder JL. Resilience, and positive parenting in parents of children with syndromic autism and intellectual disability. Evidence from the impact of the COVID-19 pandemic on family's quality of life and parent-child relationships. Autism Res 2022; 15:2381-2398. [PMID: 36196501 PMCID: PMC10092377 DOI: 10.1002/aur.2825] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2022] [Accepted: 09/09/2022] [Indexed: 12/15/2022]
Abstract
Family quality of life (FQoL) outcomes collected during the first year of COVID-19 has been combined with 2018 data to estimate the outbreak's impact on parental outcomes on a sample of 230 families with syndromic autistic children and those with intellectual disabilities (IDs). Despite challenges imposed by the COVID-19 outbreak, our study found that FQoL outcomes reported by participating parents during the first year of COVID-19 appears to be similar to ratings from a prepandemic study of families with the same conditions. Parents of children in our sample generally displayed a stable functioning trajectory as measured by the validated FQoL instrument. Across syndromic autistic groups considered, families reported that their relationships with their children were positive. Our findings provide evidence of families' resilience which might explain the presence of positive parent-child interactions during COVID-19. Exploring mechanisms which would explain how families with autistic and ID children confront, manage disruptive experiences, and buffer COVID-19 induced stress is a fruitful direction for future research.
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Affiliation(s)
- Corneliu Bolbocean
- The Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
| | | | - Maria McCormack
- Jan and Dan Duncan Neurological Research Institute, Texas Children's Hospital, Houston, Texas, USA.,Division of Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA
| | - Bernhard Suter
- Jan and Dan Duncan Neurological Research Institute, Texas Children's Hospital, Houston, Texas, USA.,Division of Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA
| | - Jimmy Lloyd Holder
- Jan and Dan Duncan Neurological Research Institute, Texas Children's Hospital, Houston, Texas, USA.,Division of Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA
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20
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Dal Pai J, Wolff CG, Aranchipe CS, Kepler CK, dos Santos GA, Canton LAL, de Carvalho AB, Richter SA, Nunes ML. COVID-19 Pandemic and Autism Spectrum Disorder, Consequences to Children and Adolescents - a Systematic Review. REVIEW JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS 2022; 11:1-26. [PMID: 36189101 PMCID: PMC9510314 DOI: 10.1007/s40489-022-00344-4] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/27/2022] [Accepted: 08/27/2022] [Indexed: 11/13/2022]
Abstract
In this systematic review, we aimed to identify the impact of the COVID-19 pandemic on children/adolescents with a diagnosis of autism spectrum disorder (ASD). The protocol was registered on PROSPERO CRD42021255848. Articles were selected from PubMed, Embase, and LILACS according to these characteristics: patients from zero to 18 years old, exposed to the COVID-19 pandemic, impact on social communication/interaction and restricted/repetitive behavior domains. The Newcastle-Ottawa Scale was used to assess methodological quality and the risk of bias. Of the 351 articles initially identified, 26 were finally included with information on 8,610 patients. Although the studies were heterogeneous, they indicated that the pandemic-related issues experienced by patients with ASD were mostly manifested in their behavior and sleep patterns. Supplementary Information The online version contains supplementary material available at 10.1007/s40489-022-00344-4.
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Affiliation(s)
- Janise Dal Pai
- Brain Institute of Rio Grande Do Sul, Pontifical Catholic University of Rio Grande do Sul (InsCer/PUCRS), Porto Alegre, Brazil
| | - Cecília Gatti Wolff
- Extension and Management of Continuing Education Activities Program, Pontifical Catholic University of Rio Grande do Sul (PEGA/PUCRS), Porto Alegre, Brazil
| | - Carolina Siciliani Aranchipe
- Extension and Management of Continuing Education Activities Program, Pontifical Catholic University of Rio Grande do Sul (PEGA/PUCRS), Porto Alegre, Brazil
| | - Carolina Knorst Kepler
- Extension and Management of Continuing Education Activities Program, Pontifical Catholic University of Rio Grande do Sul (PEGA/PUCRS), Porto Alegre, Brazil
| | - Gabriele Alves dos Santos
- Extension and Management of Continuing Education Activities Program, Pontifical Catholic University of Rio Grande do Sul (PEGA/PUCRS), Porto Alegre, Brazil
| | - Luiz Augusto Leal Canton
- Extension and Management of Continuing Education Activities Program, Pontifical Catholic University of Rio Grande do Sul (PEGA/PUCRS), Porto Alegre, Brazil
| | - Antonella Brun de Carvalho
- Extension and Management of Continuing Education Activities Program, Pontifical Catholic University of Rio Grande do Sul (PEGA/PUCRS), Porto Alegre, Brazil
| | - Samanta Andresa Richter
- Brain Institute of Rio Grande Do Sul, Pontifical Catholic University of Rio Grande do Sul (InsCer/PUCRS), Porto Alegre, Brazil
| | - Magda Lahorgue Nunes
- School of Medicine, Pontifical Catholic University of Rio Grande do Sul (InsCer/PUCRS), Av Ipiranga 6690, building 63, 2nd floor, 90610-000 Porto Alegre, Brazil
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21
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Ionescu S, Jourdan-Ionescu C. [Autism Spectrum Disorders: What the COVID-19 Pandemic Has Taught Us]. ANNALES MEDICO-PSYCHOLOGIQUES 2022; 181:S0003-4487(22)00270-0. [PMID: 36091091 PMCID: PMC9444502 DOI: 10.1016/j.amp.2022.08.013] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 05/03/2022] [Accepted: 05/30/2022] [Indexed: 11/22/2022]
Abstract
The article is devoted to the consequences of the pandemic caused by SARS-CoV-2 and more particularly, of the preventive measures adopted during this period on people with autism spectrum disorders (ASD). These people are more at risk (especially in cases of comorbidity with intellectual disability) of being infected and hospitalized longer. This increased risk is explained by the presence of biological risk factors (increased cytokines, decreased melatonin) and by psychological factors related to the clinical picture of ASD. Hesitancy concerning COVID vaccinations is discussed in relation to the erroneously purported link between vaccination and the onset of autism. As expected, the pandemic has had negative effects on the clinical picture of children, adolescents, and adults with ASD: sleep disorders, increased behavioural disorders, more stereotypies, parental distress. Unexpectedly, researchers and clinicians have also highlighted the positive effects of the pandemic, described as the "paradoxical‿ effects (improved communication and relationships, decreased anxiety, being happier because of being more in control over their schedule). The explanation for these effects was related to non-attendance at school and, thus, no bullying, decreased sensory and social overload, increased time spent at home, and solidarity with the autistic community and with the entire community. Finally, the question of the transfer of certain conditions that contributed to the above-mentioned improvements to the post-pandemic period is addressed.
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Affiliation(s)
- Serban Ionescu
- Laboratoire CHArt - EA4004 Université Paris 8 - Saint-Denis, 93200 Saint-Denis, France
| | - Colette Jourdan-Ionescu
- Laboratoire sur les facteurs de protection Université du Québec à Trois-Rivières Trois-Rivières (Québec) G8Z 4M3, Canada
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22
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The impact of COVID-19 on individuals with ASD in the US: Parent perspectives on social and support concerns. PLoS One 2022; 17:e0270845. [PMID: 35976958 PMCID: PMC9384980 DOI: 10.1371/journal.pone.0270845] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/08/2022] [Accepted: 06/20/2022] [Indexed: 11/19/2022] Open
Abstract
The COVID-19 pandemic’s disruptions to daily routines and services have proven especially challenging for children with autism spectrum disorder (ASD) and their families. The current retrospective study aimed to determine the impact of the COVID-19 pandemic’s social environmental changes on parental ratings of personal and child concerns about family conflict, opportunities for social interaction, and loss of institutional support (school and therapy services). Analyses of responses from families with ASD in the US determined differences in concerns across three time points which were measured simultaneously: prior to COVID-19, at the start of COVID-19, and at the time of survey completion. From our sample of 246 school-aged children, parents retrospectively reported significantly increasing levels of concern for both themselves and their children over time, with parents’ personal concern levels rated consistently higher than their ratings of their child’s level of concern. Concerns about loss of institutional support were higher for parents of children reported as having co-occurring intellectual disability. Further, parents of younger children also reported more concerns about loss of services, as well as more social concerns. For parent ratings of child concerns, children who were reportedly aware of COVID-19 were determined to have higher levels of social concerns and concerns about loss of institutional support. Meanwhile, the child’s age and gender did not impact their parent ratings of child concerns. The increased level of parental and child-perceived concerns over the course of the pandemic suggests a need for improved service delivery and support for these families. The high levels of concerns observed in the current study provide support for the need to assess families’ priorities and tailor services to best meet families’ needs. This will potentially increase the quality of life of family members, and improve ASD services across the lifespan, and improve outcomes.
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Sabapathy T, Goss M, Borelli JL, Steinberg-Epstein R. A Pediatrician's Guide to Working with Children on the Autism Spectrum in Coronavirus Disease 2019 and Beyond: Retrospect and Prospect. Adv Pediatr 2022; 69:41-58. [PMID: 35985716 PMCID: PMC8979765 DOI: 10.1016/j.yapd.2022.04.001] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
Abstract
The COVID-19 pandemic is an unprecedented event with devastating effects on children and families, highlighting and broadening disparities in the care of children with developmental disabilities, while simultaneously catalyzing innovation. Children are vulnerable to the impacts of COVID-19, resulting in increased stress, anxiety, isolation, and health challenges, further amplified in autistic children and children with other neurodevelopmental disabilities. These children are uniquely vulnerable due to communication impairments, comorbid medical disorders, reduced adaptability, and reliance on therapeutic interventions. Abrupt reduction in services and access to care during the pandemic compromised physical and mental health and led to missed intervention opportunities at critical times. It is important to examine the effects that the pandemic triggered, address deficiencies, and recognize new opportunities to improve systems of care to prepare for unforeseen futures.
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Affiliation(s)
- Thusa Sabapathy
- University of California, Irvine School of Medicine, The Center for Autism & Neurodevelopmental Disorders, 2500 Red Hill Avenue, Suite 100, Santa Ana, CA 92705, USA.
| | - Megan Goss
- UC Irvine/CHOC Children's Hospital of Orange County, 505 S. Main Street, Suite 525, Orange, CA 92868, USA
| | - Jessica L Borelli
- Department of Psychological Science, University of California, Irvine, 4201 Social & Behavioral Sciences Gateway, Irvine, CA 92697, USA
| | - Robin Steinberg-Epstein
- University of California, Irvine School of Medicine, The Center for Autism and Neurodevelopmental Disorders, 2500 Red Hill Avenue, Suite 100, Santa Ana, CA 92705, USA
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24
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Valderrama A, Lajoie X, Armstrong M, Luizar-Obregon A, Kraus de Camargo O. Person-reported perspectives on support availability for people with disabilities during the COVID-19 pandemic in Quebec. CANADIAN JOURNAL OF PUBLIC HEALTH = REVUE CANADIENNE DE SANTE PUBLIQUE 2022; 113:834-845. [PMID: 35902539 PMCID: PMC9333069 DOI: 10.17269/s41997-022-00671-3] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 09/03/2021] [Accepted: 06/29/2022] [Indexed: 12/14/2022]
Abstract
OBJECTIVES To identify the perception of the availability of community support and the support needs of autistic people and people with disabilities, from their own perspectives and from those of their caregivers at the time of the COVID-19 pandemic in Quebec, to assess the association between the available support and the perceived stress levels to evaluate the role of perceived social support as a potential buffer of this association. METHODS A total of 315 respondents participated in a 4-min online survey across the province of Quebec by snowball sampling. Community support was defined as availability of adapted healthcare, adapted information, adapted educational services and community services. RESULTS The community support and services during the COVID-19 pandemic were not available or were not sufficiently adapted to their needs. About 40% of autistic people or people with disabilities and 44% of their caregivers perceived their days as being quite stressful or extremely stressful. This is twice the rate of that of the general population in non-pandemic time. Nevertheless, social supports can play a mediating role in attenuating the effects of the absence of adapted services on the stress level of this vulnerable population. CONCLUSION The non-availability of adapted services was related to an increase in the stress level in this population. Our study adds that other than social support, adapted healthcare/tele-healthcare and in-home support services could reduce the impact of the pandemic on the stress level of autistic people and people with disabilities. Adapted educational services and necessary equipment for online education for people without resources could reduce the impact on the stress level in caregivers. People with disabilities and their caregivers are one of the most vulnerable groups in our society. Public health measures of containment and mitigation need to consider more their specific needs.
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Affiliation(s)
- Alena Valderrama
- Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montreal, QC Canada ,Sainte-Justine University Hospital and Research Centre of the Sainte-Justine University Hospital, 3175 Chem. de la Côte-Sainte-Catherine, Montreal, QC H3T 1C5 Canada
| | - Xanthy Lajoie
- Department of Psychology, Université de Montréal, Montreal, QC Canada
| | - Mylène Armstrong
- Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montreal, QC Canada
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Arazi A, Koller J, Zachor DA, Golan O, Sadaka Y, Eytan D, Stolar O, Atzaba-Poria N, Golan H, Menashe I, Meiri G, Gabis LV, Dinstein I. Home-quarantine during the initial Covid-19 outbreak in Israel: parent perceived impact on children with ASD. Heliyon 2022; 8:e09681. [PMID: 35698655 PMCID: PMC9176182 DOI: 10.1016/j.heliyon.2022.e09681] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/13/2022] [Revised: 03/23/2022] [Accepted: 06/01/2022] [Indexed: 11/30/2022] Open
Abstract
Background Studies have reported that Covid-19 home-quarantine periods have had mostly negative psychological impact on children with ASD and their families. Here we examined parent perceived impact of a 6-week quarantine period imposed in Israel at the beginning of the Covid-19 outbreak, in mid-March 2020. Methods An anonymous online questionnaire was completed by parents of 268 children with ASD. Parents rated deterioration/improvement in their child's behaviors, abilities, mood, sleep, and anxiety along with changes in their own mood, sleep, parenting skills, and family relationships. We performed t-tests and ANOVA analyses to assess the significance of perceived impact on each domain and potential differences in the impact across families with children of different ages, genders, and levels of required support as well as families that experienced different magnitudes of economic hardships. Results Parents reported significant deterioration in their mood and sleep along with significant improvements in relationships with their spouse and child with ASD, and in their parenting skills. Parents also reported significant increases in the severity of tantrums, anxiety, and restricted and repetitive behavior symptoms along with significant improvements in social and communication abilities of their child with ASD. Ratings were significantly lower in families of ASD children who regularly require more support and in families that experienced economic hardships. Conclusions While periods of home-quarantine create numerous hardships for families of children with ASD, they may also offer an opportunity for improving parenting skills, family relationships, and children's social communication abilities with potential relevance for improving remote services.
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Affiliation(s)
- Ayelet Arazi
- Department of Cognitive & Brain Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel
- Azrieli National Centre for Autism and Neurodevelopment Research, Ben Gurion University of the Negev, Beer Sheva, Israel
| | - Judah Koller
- Seymour Fox School of Education, The Hebrew University of Jerusalem, Jerusalem, Israel
| | - Ditza A. Zachor
- Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
- The Autism Center/ALUT, Shamir (Assaf Harofeh) Medical Center, Israel
| | - Ofer Golan
- Autism Treatment and Research Center – Association for Children at Risk, Ramat Gan, Israel
- Department of Psychology, Bar-Ilan University, Ramat Gan, Israel
- Autism Research Centre, Department of Psychiatry, University of Cambridge, UK
| | - Yair Sadaka
- Neuro-Developmental Research Centre, Beer Sheva Mental Health Centre, Ministry of Health, Beer Sheva, Israel
| | - Dganit Eytan
- ALUT – The Israeli Society for Children and Adults with Autism, Ramat Gan, Israel
- School of Education, Bar-Ilan University, Ramat Gan, Israel
| | - Orit Stolar
- The Autism Center/ALUT, Shamir (Assaf Harofeh) Medical Center, Israel
| | - Naama Atzaba-Poria
- Department of Psychology, Ben Gurion University of the Negev, Beer Sheva, Israel
- Pre-School Psychiatry Unit, Soroka University Medical Center, Beer Sheva, Israel
- Duet Center, Ben Gurion University of the Negev, Beer-Sheva, Israel
| | - Hava Golan
- Azrieli National Centre for Autism and Neurodevelopment Research, Ben Gurion University of the Negev, Beer Sheva, Israel
- Department of Physiology and Cell Biology, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel
| | - Idan Menashe
- Azrieli National Centre for Autism and Neurodevelopment Research, Ben Gurion University of the Negev, Beer Sheva, Israel
- Department of Public Health, Ben Gurion University of the Negev, Beer Sheva, Israel
| | - Gal Meiri
- Azrieli National Centre for Autism and Neurodevelopment Research, Ben Gurion University of the Negev, Beer Sheva, Israel
- Pre-School Psychiatry Unit, Soroka University Medical Center, Beer Sheva, Israel
| | - Lidia V. Gabis
- Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
- Sagol School of Neuroscience, Tel Aviv University, Tel Aviv, Israel
- Child Development Services, Maccabi Healthcare, Tel Aviv, Israel
| | - Ilan Dinstein
- Department of Cognitive & Brain Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel
- Azrieli National Centre for Autism and Neurodevelopment Research, Ben Gurion University of the Negev, Beer Sheva, Israel
- Department of Psychology, Ben Gurion University of the Negev, Beer Sheva, Israel
- Corresponding author.
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Dimitriou D, Esposito G. Management and support of individuals with developmental disabilities during the COVID-19 pandemic. RESEARCH IN DEVELOPMENTAL DISABILITIES 2022; 125:104228. [PMID: 35358826 PMCID: PMC8942653 DOI: 10.1016/j.ridd.2022.104228] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/14/2023]
Affiliation(s)
- Dagmara Dimitriou
- Sleep Research and Education Laboratory, UCL Institute of Education, London, United Kingdom.
| | - Gianluca Esposito
- Department of Psychology and Cognitive Science, University of Trento, Rovereto, Italy.
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Bozkus-Genc G, Sani-Bozkurt S. How parents of children with autism spectrum disorder experience the COVID-19 pandemic: Perspectives and insights on the new normal. RESEARCH IN DEVELOPMENTAL DISABILITIES 2022; 124:104200. [PMID: 35180544 PMCID: PMC8841154 DOI: 10.1016/j.ridd.2022.104200] [Citation(s) in RCA: 11] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 05/26/2021] [Revised: 01/30/2022] [Accepted: 02/09/2022] [Indexed: 06/14/2023]
Abstract
BACKGROUND Considering the fact that family members necessarily spend more time together during the pandemic, this study aims to reveal the perceptions of parents with children who have autism spectrum disorder of the COVID-19 pandemic in Turkey and their experiences of the difficulties during the pandemic. METHOD A qualitative phenomenology design was used in the study. Seven mothers and one father gave their consent and participated in the study. Data were collected through semi-structured interviews and analyzed using content analysis. RESULTS The results of the analysis were collected in two broad themes using 68 codes. The perspective of the parents, who evaluated the pandemic process positively in the beginning, became negative as lockdown lengthened. The issues and adverse effects of the pandemic that they most talked about were the increasing roles and responsibilities of parents, the deep impact on their mental health, and the problems experienced in distance education. CONCLUSIONS During this period, parents who were psychologically depressed wanted to feel that they were not alone. Parents made many suggestions and recommendations so that others would not have the same experience.
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Affiliation(s)
- Gulden Bozkus-Genc
- Education Faculty, Department of Special Education, Anadolu University, Eskisehir, Turkey.
| | - Sunagul Sani-Bozkurt
- Education Faculty, Department of Special Education, Anadolu University, Eskisehir, Turkey.
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Ahmed S, Hanif A, Khaliq I, Ayub S, Saboor S, Shoib S, Jawad MY, Arain F, Anwar A, Ullah I, Naveed S, Mahmood Khan A. Psychological impact of the COVID-19 pandemic in children with autism spectrum disorder - a literature review. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2022; 70:173-183. [PMID: 38481463 PMCID: PMC10930115 DOI: 10.1080/20473869.2022.2066248] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/13/2021] [Accepted: 04/10/2022] [Indexed: 11/01/2024]
Abstract
Objective: This review summarizes evidence pertaining to the impact of the COVID-19 pandemic on the psychological health of children and adolescents with autism spectrum disorder (ASD). Materials and Methods: An electronic search was conducted using four major databases: PubMed, ScienceDirect, Web of Science, and Google Scholar. Using an umbrella methodology, the reference lists of relevant papers were reviewed, and citation searches were conducted. The study included articles written in English between January 2020 and March 2021 that focused on the psychological health of autistic children and adolescents. Results: All eight studies included in the final review were cross-sectional. Three of the eight studies were conducted in Italy, two in Turkey, and one study each in Portugal, Spain, and the United Kingdom, with a total of 1,407 participants. All studies used a mixture of standardized and non-standardized questionnaires to collect data. The total number of patients were 1407 at a mean age of 9.53 (SD = 2.96) years. Seven studies report gender; male 74.7% (657/880) and female 25.3% (223/880). The finding showed that behavioral issues in children and adolescents with ASD have significantly increased; 521 (51.9 percent) of the 1004 individuals with ASD presented with behavioral changes, including conduct problems, emotional problems, aggression, and hyperactivity. Some studies also found increased anxiety and difficulties managing emotions. Only one study reported clinical stabilization in children with ASD during COVID-19. Finally, 82.7% of families and caregivers of children with ASD (544 out of 658) faced challenges during COVID-19. Conclusion: Although the studies in this review suggest a general worsening of ASD children's clinical status, it remains difficult to draw definitive conclusions at this moment, with newer COVID-19 variants on the rise worldwide. During this difficult pandemic period, caregivers, families, and healthcare professionals are recommended to pay more attention to the ASD patients' health and care needs.
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Affiliation(s)
- Saeed Ahmed
- Addiction Psychiatry, Rutland Regional Medical Center, Rutland, VT, USA
| | - Aunsa Hanif
- Sharif Medical and Dental College, Lahore, Pakistan
| | | | - Shahana Ayub
- Cornerstone Family Healthcare, Newburgh, NY, USA
| | - Sundas Saboor
- Psychiatry, Khyber Medical College, Peshawar, Pakistan
| | - Sheikh Shoib
- Psychiatry, Jawahar Lal Nehru Memorial Hospital, Srinagar, India
| | | | - Fauzia Arain
- Child and Adolescent Psychiatry, BronxCare Hospital, Icahn School of Medicine at Mount Sinai, New York City, NY, USA
| | - Amna Anwar
- Jinnah Medical College Hospital, Karachi, Pakistan
| | - Irfan Ullah
- Kabir Medical College, Gandhara University, Peshawar, Pakistan
| | - Sadiq Naveed
- Child and Adolescent Psychiatry, Hartford Hospital Institute of Living, Hartford, CT, USA
| | - Ali Mahmood Khan
- Department of Child and Adolescent Psychiatry, New York University, New York City, NY, USA
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Kreysa H, Schneider D, Kowallik AE, Dastgheib SS, Doğdu C, Kühn G, Ruttloff JM, Schweinberger SR. Psychosocial and Behavioral Effects of the COVID-19 Pandemic on Children and Adolescents with Autism and Their Families: Overview of the Literature and Initial Data from a Multinational Online Survey. Healthcare (Basel) 2022; 10:714. [PMID: 35455891 PMCID: PMC9028372 DOI: 10.3390/healthcare10040714] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/08/2022] [Revised: 04/05/2022] [Accepted: 04/07/2022] [Indexed: 02/04/2023] Open
Abstract
Since COVID-19 has become a pandemic, everyday life has seen dramatic changes affecting individuals, families, and children with and without autism. Among other things, these changes entail more time at home, digital forms of communication, school closures, and reduced support and intervention. Here, we assess the effects of the pandemic on quality of life for school-age autistic and neurotypical children and adolescents. First, we provide a comprehensive review of the current relevant literature. Next, we report original data from a survey conducted in several countries, assessing activities, well-being, and social life in families with autism, and their changes over time. We focus on differences between children with and without autism from within the same families, and on different outcomes for children with high- or low-functioning autism. While individuals with autism scored lower in emotional and social functioning than their neurotypical siblings, both groups of children showed comparable decreases in well-being and increases in anxiety, compared to before the pandemic. By contrast, decreases in adaptability were significantly more pronounced in autistic children and adolescents compared to neurotypical children and adolescents. Overall, although individual families reported some positive effects of pandemic restrictions, our data provide no evidence that these generalize across children and adolescents with autism, or even just to individuals with high-functioning autism. We discuss the increased challenges that need to be addressed to protect children and adolescents' well-being under pandemic conditions, but also point out potentials in the present situation that could be used towards social participation and success in older children and young adults with autism.
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Affiliation(s)
- Helene Kreysa
- Social Potential in Autism Research Unit & Department of General Psychology and Cognitive Neuroscience, Friedrich Schiller University Jena, 07743 Jena, Germany; (A.E.K.); (S.S.D.); (J.M.R.)
| | - Dana Schneider
- Social Potential in Autism Research Unit & Department of Social Psychology, Friedrich Schiller University Jena, 07743 Jena, Germany; (D.S.); (C.D.)
- DFG Scientific Network “Understanding Others”, SCHN 1481/2-1, 10117 Berlin, Germany
| | - Andrea Erika Kowallik
- Social Potential in Autism Research Unit & Department of General Psychology and Cognitive Neuroscience, Friedrich Schiller University Jena, 07743 Jena, Germany; (A.E.K.); (S.S.D.); (J.M.R.)
- Early Support and Counseling Center Jena, Herbert Feuchte Stiftungsverbund, 07743 Jena, Germany;
- Department of Psychiatry, Jena University Hospital, 07743 Jena, Germany
| | - Samaneh Sadat Dastgheib
- Social Potential in Autism Research Unit & Department of General Psychology and Cognitive Neuroscience, Friedrich Schiller University Jena, 07743 Jena, Germany; (A.E.K.); (S.S.D.); (J.M.R.)
| | - Cem Doğdu
- Social Potential in Autism Research Unit & Department of Social Psychology, Friedrich Schiller University Jena, 07743 Jena, Germany; (D.S.); (C.D.)
| | - Gabriele Kühn
- Early Support and Counseling Center Jena, Herbert Feuchte Stiftungsverbund, 07743 Jena, Germany;
| | - Jenny Marianne Ruttloff
- Social Potential in Autism Research Unit & Department of General Psychology and Cognitive Neuroscience, Friedrich Schiller University Jena, 07743 Jena, Germany; (A.E.K.); (S.S.D.); (J.M.R.)
| | - Stefan R. Schweinberger
- Social Potential in Autism Research Unit & Department of General Psychology and Cognitive Neuroscience, Friedrich Schiller University Jena, 07743 Jena, Germany; (A.E.K.); (S.S.D.); (J.M.R.)
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30
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Wanjagua R, Hepburn S, Faragher R, John ST, Gayathri K, Gitonga M, Meshy CF, Miranda L, Sindano D. Key learnings from
COVID
‐19 to sustain quality of life for families of individuals with
IDD. JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES 2022; 19:72-85. [PMID: 35601013 PMCID: PMC9115200 DOI: 10.1111/jppi.12415] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/26/2021] [Revised: 01/23/2022] [Accepted: 02/06/2022] [Indexed: 12/13/2022]
Affiliation(s)
- Rachael Wanjagua
- Department of Disability and Human Development University of Illinois at Chicago Chicago Illinois USA
| | - Stevie‐Jae Hepburn
- School of Education The University of Queensland Brisbane Queensland Australia
| | - Rhonda Faragher
- School of Education The University of Queensland Brisbane Queensland Australia
| | | | - K. Gayathri
- Down Syndrome Clinic Baby Memorial Hospital Calicut India
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31
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Salmerón-Medina M, Tàpia-Córcoles A, Palou-Artola E, Nicolau-Palou R, Calvo-Escalona R. [Analysis of the impact of COVID-19 on youngsters with autistic spectrum disorder]. Rev Neurol 2022; 74:181-188. [PMID: 35275394 PMCID: PMC11502216 DOI: 10.33588/rn.7406.2021291] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/11/2022] [Indexed: 06/14/2023]
Abstract
INTRODUCTION The state of emergency and national lockdown declared in Spain over the coronavirus pandemic markedly impaired routines and access towards health services supports for children with Autism Spectrum Disorder (ASD). This population is of particular vulnerability towards sudden changes and is distinguished by their complex management. OBJECTIVES The main goal was to qualitatively assess the psychosocial and mental state of children diagnosed with ASD affiliated to the Hospital Clinic de Barcelona, during and after the first lockdown period. PATIENTS AND METHODS A survey was administered to relatives of 65 boys and girls with a main diagnosis of ASD. RESULTS A worsening of key A symptoms was reported during lockdown. In addition, the use of new technologies, intake between meals, and anxiety symptoms increased. Recovery after lockdown was not complete in our sample. CONCLUSIONS These results highlight the need for planning specific supports for minors with ASD and for resources to reverse the effects on routines, habits, and school returnal.
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32
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Papanikolaou K, Ntre V, Gertsou IM, Tagkouli E, Tzavara C, Pehlivanidis A, Kolaitis G. Parenting Children with Autism Spectrum Disorder during Crises: Differential Responses between the Financial and the COVID-19 Pandemic Crisis. J Clin Med 2022; 11:jcm11051264. [PMID: 35268354 PMCID: PMC8911193 DOI: 10.3390/jcm11051264] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/26/2021] [Revised: 02/23/2022] [Accepted: 02/24/2022] [Indexed: 02/04/2023] Open
Abstract
Parenting a child with autism can be particularly stressful and challenging, especially during periods of crises. This study focuses on parenting children with autism during the COVID-19 pandemic in comparison to the economic crisis, six years ago. We administered the same set of questionnaires (CES-D, F-COPES, PSI-SF, and WHOQoL-BREF), along with a demographic characteristic and a COVID-19-related questionnaire to the same group of parents of children with autism as we did six years ago. Results indicated that during the COVID-19 crisis, the level of parenting stress and the distress due to personal factors related to demands of parenting, were significantly lower compared to the economic crisis, while the environment facet of quality of life was significantly higher. The depressive symptomatology was elevated during both periods. Finally, when addressing the pandemic crisis, parents were more likely to passively accept problematic issues, less able to obtain social support, and less able to acquire and accept help from others. In our sample, findings differentiate the genre of crises through the parents’ responses regarding the sense of competence in their parental role, their quality of life, and the coping strategies they implemented. The study implies that each crisis must be confronted with particular responses to particular needs.
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Affiliation(s)
- Katerina Papanikolaou
- Department of Child Psychiatry, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, 11527 Athens, Greece; (V.N.); (I.-M.G.); (E.T.); (C.T.); (G.K.)
- Correspondence:
| | - Vassiliki Ntre
- Department of Child Psychiatry, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, 11527 Athens, Greece; (V.N.); (I.-M.G.); (E.T.); (C.T.); (G.K.)
| | - Ioanna-Maria Gertsou
- Department of Child Psychiatry, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, 11527 Athens, Greece; (V.N.); (I.-M.G.); (E.T.); (C.T.); (G.K.)
| | - Evdokia Tagkouli
- Department of Child Psychiatry, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, 11527 Athens, Greece; (V.N.); (I.-M.G.); (E.T.); (C.T.); (G.K.)
| | - Chara Tzavara
- Department of Child Psychiatry, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, 11527 Athens, Greece; (V.N.); (I.-M.G.); (E.T.); (C.T.); (G.K.)
| | - Artemios Pehlivanidis
- First Department of Psychiatry, Medical School, National and Kapodistrian University of Athens, Eginition Hospital, 11528 Athens, Greece;
| | - Gerasimos Kolaitis
- Department of Child Psychiatry, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, 11527 Athens, Greece; (V.N.); (I.-M.G.); (E.T.); (C.T.); (G.K.)
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Dekker L, Hooijman L, Louwerse A, Visser K, Bastiaansen D, Ten Hoopen L, De Nijs P, Dieleman G, Ester W, Van Rijen S, Truijens F, Van der Hallen R. Impact of the COVID-19 pandemic on children and adolescents with autism spectrum disorder and their families: a mixed-methods study protocol. BMJ Open 2022; 12:e049336. [PMID: 35078834 PMCID: PMC8795917 DOI: 10.1136/bmjopen-2021-049336] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/01/2021] [Accepted: 12/03/2021] [Indexed: 12/28/2022] Open
Abstract
BACKGROUND The COVID-19 pandemic is a challenge for everyone, particularly for children and adolescents with autism spectrum disorder (ASD). ASD is a developmental disorder characterised by limitations in social communication, repetitive behavioural patterns, and limited interests, and activities. It is expected that many families with children with ASD will experience more problems due to the COVID-19 pandemic and the related public health restrictions. At the same time, some may experience improved functioning, due to fewer expectations and social demands. METHODS/DESIGN In a mixed-method study to identify the impact of the COVID-19 pandemic, parents of children with ASD (ages 4-21) who were in care pre-COVID-19 at one of three large mental healthcare institutions in the region of Rotterdam participated (68 for T0, 57 for T1). The aims are (1) to investigate the impact of the COVID-19 pandemic on overall functioning and autistic symptoms of the child/adolescent with ASD, as well as parental and family functioning (QUANT-QUAL), in both the short term and longer term, and (2) to investigate risk and protective factors (in light of resilience) (QUANT-qual) and (3) to investigate care and informational needs (QUAL-quant). Pre-COVID-19 baseline data will be retrieved from clinical records. Participants will fill out two surveys (one during a COVID-19 peak-January-May 2021-and one thereafter). Survey participants were invited to participate in interviews (n=27). Surveys include measures thar were included pre-COVID-19 (ie, overall functioning and autism symptoms) as well as specific measures to identify family functioning and COVID-19 impact. The semistructured interviews focus on child, parent and family functioning and care-and informational needs. ETHICS AND DISSEMINATION The Medical Ethics Committee of the Erasmus MC has approved the study. Findings will be available to families of children with ASD, their care providers, the funders, autism societies, the government and other researchers.
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Affiliation(s)
- Linda Dekker
- Department of Psychology, Education and Child Studies, Erasmus Universiteit Rotterdam, Rotterdam, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Linde Hooijman
- Department of Psychology, Education and Child Studies, Erasmus Universiteit Rotterdam, Rotterdam, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Anneke Louwerse
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children Hospital, Rotterdam, The Netherlands
| | - Kirsten Visser
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- SARR Expert Centre for Autism, Youz Child- and Adolescent Psychiatry, Parnassia Group, Rotterdam, The Netherlands
| | - Dennis Bastiaansen
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Yulius Autism, Yulius, Mental Health Organisation, Barendrecht, The Netherlands
| | - Leontine Ten Hoopen
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children Hospital, Rotterdam, The Netherlands
| | - Pieter De Nijs
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children Hospital, Rotterdam, The Netherlands
| | - Gwen Dieleman
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children Hospital, Rotterdam, The Netherlands
| | - Wietske Ester
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
- SARR Expert Centre for Autism, Youz Child- and Adolescent Psychiatry, Parnassia Group, Rotterdam, The Netherlands
- Child- and Adolescent Psychiatry, Curium-LUMC, Oegstgeest, The Netherlands
- Parnassia Bavo Group, Parnassia Bavo Academy, Erasmus MC, The Hague, The Netherlands
| | - Susan Van Rijen
- Department of Psychology, Education and Child Studies, Erasmus Universiteit Rotterdam, Rotterdam, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Femke Truijens
- Department of Psychology, Education and Child Studies, Erasmus Universiteit Rotterdam, Rotterdam, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
| | - Ruth Van der Hallen
- Department of Psychology, Education and Child Studies, Erasmus Universiteit Rotterdam, Rotterdam, The Netherlands
- Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands
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Fridell A, Norrman HN, Girke L, Bölte S. Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 19:1268. [PMID: 35162290 PMCID: PMC8835079 DOI: 10.3390/ijerph19031268] [Citation(s) in RCA: 18] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 12/02/2021] [Revised: 01/13/2022] [Accepted: 01/15/2022] [Indexed: 02/04/2023]
Abstract
While the COVID-19 pandemic is ongoing, early outcome studies indicate severe and pervasive global effects of the pandemic and associated measures to prevent the spread of the virus. General population studies, as well as insight into the outcomes for particular groups, will be necessary in order to mitigate potentially long-term effects as well as to prepare for future epidemics or pandemics. The pandemic conditions have been marked by rapid and abrupt changes and unpredictability which are circumstances that leave the autistic population particularly vulnerable to adverse outcomes following the distinctive features of the diagnosis. Studies are only beginning to delineate the outcomes of the global autism community and the present study adds to these findings by providing a local, multi-perspective, qualitative analysis of the lived experiences of the Swedish autism community. In this study, autistic youth and adults, caregivers of autistic individuals, as well as representatives of Swedish interest organizations were interviewed. Thematic analysis was performed on the population as a whole and patterns of results were formalized according to the International Classification of Function, Disability and Health (ICF-CY). Participants report wide-ranging adverse outcomes of the pandemic relating to mental health and access to support, participation in daily activities and socialization, education, and work as well as parental resources. However, participants also report positive outcomes relating to a reduction in specific social and everyday demands, and normalization of lived experiences. Additionally, interviews outlined some strategies used to cope during pandemic conditions. Implications of these findings are discussed.
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Affiliation(s)
- Anna Fridell
- Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden; (H.N.N.); (L.G.); (S.B.)
- Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm,118 61 Stockholm, Sweden
- Curtin Autism Research Group, Curtin School of Allied Health, Curtin University, Perth, WA 6102, Australia
| | - Hjalmar Nobel Norrman
- Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden; (H.N.N.); (L.G.); (S.B.)
| | - Linda Girke
- Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden; (H.N.N.); (L.G.); (S.B.)
- Department of Psychology, Developmental Psychology, Uppsala University, 751 05 Uppsala, Sweden
| | - Sven Bölte
- Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden; (H.N.N.); (L.G.); (S.B.)
- Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm,118 61 Stockholm, Sweden
- Curtin Autism Research Group, Curtin School of Allied Health, Curtin University, Perth, WA 6102, Australia
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ASDesign: A User-Centered Method for the Design of Assistive Technology That Helps Children with Autism Spectrum Disorders Be More Independent in Their Daily Routines. SUSTAINABILITY 2022. [DOI: 10.3390/su14010516] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 02/01/2023]
Abstract
COVID-19 has posed new physical and mental challenges for the population worldwide, establishing social and structural changes in the labor market that could be maintained and implemented permanently. This new reality will require new strategies to improve family and work conciliation, which is especially challenging for families with children suffering from psychological pathologies such as autism spectrum disorder (ASD). These changes have led to more frequent and intense behavioral problems, causing stress, anxiety, and confusion for these children and their families. Thus, the need to have tools that help parents reconcile work with the care of these children, who have low autonomy, is reinforced. This work develops a method for the design of assistive technology and smart products to support children with ASD in following a routine and managing tasks autonomously. In this way, the article analyzes the design problem including the needs and preferences of children with ASD and their parents during confinement in terms of dependence and adaptability; develops a design method for interactive and smart products focused on children with ASD in confinement situations; and validates this method in a case study, in which a robot is developed that makes it easier for children with ASD to follow a routine.
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Logrieco MG, Casula L, Ciuffreda GN, Novello RL, Spinelli M, Lionetti F, Nicolì I, Fasolo M, Giovanni V, Stefano V. 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 2022; 120:104130. [PMID: 34826776 PMCID: PMC8602998 DOI: 10.1016/j.ridd.2021.104130] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/30/2021] [Revised: 11/03/2021] [Accepted: 11/16/2021] [Indexed: 05/08/2023]
Abstract
BACKGROUND The lockdown due to the COVID-19 pandemic has been a difficult period for children with Autism Spectrum Disorder (ASD), and their families. AIMS The aim of this study was to investigate the predictors of the quality of life (QoL) of children with ASD and their parents throughout the first lockdown, providing a snapshot of the impact of the pandemic on these families life. METHOD AND PROCEDURES A cohort of 243 parents of children with ASD (2-15 years old) completed an original online survey regarding the modification of ASD cores symptoms during lockdown, the type of interventions they had done before and during lockdown and the activities performed by the child. Respondents filled the PedsQL for themselves and their children. OUTCOME AND RESULTS The data obtained show a worsening of specific ASD core symptoms during lockdown and their role in predicting parents and children's QoL. Furthermore, protective factors for a better children's QoL as the Telehealth intervention, and some activities done at home during the lockdown as physical activity and play with parents are identified. CONCLUSIONS This study identifies the QoL's risk and protective factors for children with ASD and their families. Furthermore, reveals the fundamental role of the parents as children's QoL protective factor, suggesting a higher collaboration between families and health care providers, whilst potentially improving families and children's QoL.
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Affiliation(s)
- Maria Grazia Logrieco
- University "G. d'Annunzio" Chieti-Pescara, Department of Neuroscience Imaging and Clinical Sciences, Via dei Vestini 33, 66100, Chieti, CH, Italy.
| | - Laura Casula
- Department of Neuroscience, IRCCS Children's Hospital Bambino Gesù, Piazza Sant' Onofrio, 4 00165, Rome, RM, Italy.
| | | | - Roberta Lucia Novello
- Department of Neuroscience, IRCCS Children's Hospital Bambino Gesù, Piazza Sant' Onofrio, 4 00165, Rome, RM, Italy.
| | - Maria Spinelli
- University "G. d'Annunzio" Chieti-Pescara, Department of Neuroscience Imaging and Clinical Sciences, Via dei Vestini 33, 66100, Chieti, CH, Italy.
| | - Francesca Lionetti
- University "G. d'Annunzio" Chieti-Pescara, Department of Neuroscience Imaging and Clinical Sciences, Via dei Vestini 33, 66100, Chieti, CH, Italy.
| | - Ilaria Nicolì
- University "G. d'Annunzio" Chieti-Pescara, Department of Neuroscience Imaging and Clinical Sciences, Via dei Vestini 33, 66100, Chieti, CH, Italy.
| | - Mirco Fasolo
- University "G. d'Annunzio" Chieti-Pescara, Department of Neuroscience Imagingand Clinical Sciences, Via dei Vestini 33, 66100, Chieti, CH, Italy.
| | - Valeri Giovanni
- Department of Neuroscience, IRCCS Children's Hospital Bambino Gesù, Piazza Sant' Onofrio, 4 00165, Rome, RM, Italy.
| | - Vicari Stefano
- Department of Neuroscience, IRCCS Children's Hospital Bambino Gesù, Piazza Sant' Onofrio, 4 00165 Rome, RM, Italy.
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Teixeira OFB, Xavier SPL, Félix NDDC, Silva JWMD, Abreu RMSXD, Miranda KCL. Repercusiones de la pandemia de COVID-19 para las personas con autismo y sus familias: revisión de alcance. Rev Lat Am Enfermagem 2022. [DOI: 10.1590/1518-8345.5965.3728] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/11/2023] Open
Abstract
Resumen Objetivo: mapear la evidencia científica disponible sobre las repercusiones de la pandemia de COVID-19 para las personas con Trastorno del Espectro Autista y sus familiares. Método: revisión de alcance realizada en las siguientes bases de datos: MEDLINE, CINAHL, SciELO, SCOPUS, EMBASE, Wiley Online Library, en agosto/septiembre de 2021. El protocolo de esta revisión fue registrado en Open Science Framework bajo DOI 10.17605/OSF.IO/JYTVD. Los datos fueron analizados y sintetizados en forma narrativa. Resultados: 46 publicaciones identificadas indican que el período de pandemia trajo numerosas repercusiones para la población con autismo y sus familiares al experimentar serias dificultades en los cambios o irregularidades en las rutinas programadas; acceso limitado a educación, terapias y apoyo social. Conclusión: la evidencia sugiere que la pandemia de COVID-19 agudizó las desigualdades que ya experimentaban las personas con autismo y sus familias, tuvo consecuencias negativas en los aspectos emocionales, psicológicos, comportamentales y sociales, que afectaron la calidad de vida y salud mental de esta población. Es fundamental que se realicen estudios futuros sobre personas con autismo y sus familias durante períodos de crisis de salud pública para planificar intervenciones psiquiátricas, psicosociales y educativas.
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Teixeira OFB, Xavier SPL, Félix NDDC, Silva JWMD, Abreu RMSXD, Miranda KCL. Repercussões da pandemia da COVID-19 para pessoas com autismo e aos seus familiares: revisão de escopo. Rev Lat Am Enfermagem 2022. [DOI: 10.1590/1518-8345.5965.3730] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/11/2023] Open
Abstract
Resumo Objetivo: mapear as evidências científicas disponíveis sobre as repercussões da pandemia da COVID-19 para as pessoas com Transtorno do Espectro Autista e seus familiares. Método: revisão de escopo realizada nas bases de dados: MEDLINE, CINAHL, SciELO, SCOPUS, EMBASE, Wiley Online Library, nos meses de agosto/setembro de 2021. O protocolo desta revisão foi registrado em Open Science Framework sob o DOI 10.17605/OSF.IO/JYTVD. Os dados foram analisados e sintetizados de forma narrativa. Resultados: 46 publicações identificadas sinalizam que o período pandêmico trouxe inúmeras repercussões para a população com autismo e seus familiares ao vivenciarem sérias dificuldades nas mudanças ou irregularidades das rotinas programadas; limitação no acesso à educação, às terapias e apoio social. Conclusão: as evidências sugerem que a pandemia da COVID-19 exacerbou as desigualdades já vivenciadas por pessoas com autismo e seus familiares, com consequências negativas nos aspectos emocionais, psicológicos, comportamentais e sociais, interferindo na qualidade de vida e saúde mental desta população. Estudos futuros sobre indivíduos com autismo e suas famílias durante períodos de crise de saúde coletiva são de fundamental importância para o planejamento de intervenções psiquiátricas, psicossociais e educacionais.
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Teixeira OFB, Xavier SPL, Félix NDDC, da Silva JWM, de Abreu RMSX, Miranda KCL. Repercussions of the COVID-19 pandemic for people with autism and their family members: A scoping review. Rev Lat Am Enfermagem 2022; 30:e3729. [PMID: 36629727 PMCID: PMC9818295 DOI: 10.1590/1518-8345.5965.3729] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/14/2022] [Accepted: 07/08/2022] [Indexed: 01/11/2023] Open
Abstract
OBJECTIVE to map the diverse scientific evidence available about the repercussions of the COVID-19 pandemic for people with Autism Spectrum Disorder and their family members. METHOD a scoping review conducted in the following databases: MEDLINE, CINAHL, SciELO, SCOPUS, EMBASE and Wiley Online Library, in August and September 2021. The protocol of this review was registered at the Open Science Framework under DOI 10.17605/OSF.IO/JYTVD. The data were analyzed and synthesized in a narrative way. RESULTS a total of 46 publications identified indicate that the pandemic period brought about countless repercussions for the population with autism and their family members when experiencing serious difficulties in the changes or irregularities of the scheduled routines and limited access to education, therapies and social support. CONCLUSION the diverse evidence suggests that the COVID-19 pandemic intensified the inequalities already experienced by individuals with autism and their family members, with negative consequences in the emotional, psychological, behavioral and social aspects, interfering with the quality of life and mental health of this population segment. Future studies on individuals with autism and their families during public health crisis periods are of fundamental importance for planning psychiatric, psychosocial and educational interventions.
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Affiliation(s)
- Olga Feitosa Braga Teixeira
- Universidade Federal de Campina Grande, Unidade Acadêmica da Escola Técnica De Saúde de Cajazeiras, Cajazeiras, PB, Brazil
- Universidade Estadual do Ceará, Fortaleza, CE, Brazil
| | - Samyra Paula Lustoza Xavier
- Universidade Estadual do Ceará, Fortaleza, CE, Brazil
- Universidade Regional do Cariri, Centro de Ciências Biológicas e da Saúde, Iguatu, CE, Brazil
| | | | - José Wagner Martins da Silva
- Universidade Estadual do Ceará, Fortaleza, CE, Brazil
- Universidade Regional do Cariri, Centro de Ciências Biológicas e da Saúde, Iguatu, CE, Brazil
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Alonso-Esteban Y, López-Ramón MF, Moreno-Campos V, Navarro-Pardo E, Alcantud-Marín F. A Systematic Review on the Impact of the Social Confinement on People with Autism Spectrum Disorder and Their Caregivers during the COVID-19 Pandemic. Brain Sci 2021; 11:1389. [PMID: 34827388 PMCID: PMC8615555 DOI: 10.3390/brainsci11111389] [Citation(s) in RCA: 19] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/20/2021] [Revised: 10/13/2021] [Accepted: 10/18/2021] [Indexed: 02/05/2023] Open
Abstract
UNLABELLED The COVID-19 pandemic had imposed a variety of containment measures on the general population for prolonged periods. Confinement has had, and still has, social, economic, educational, health, and psychological consequences on the entire population. OBJECTIVE In this article, a systematic search has been performed based on studies carried out since the beginning of the pandemic, regarding the impact of these containment measures on the autism spectrum disorder (ASD) population and their caregivers. METHOD We consulted six databases (i.e., PubMed, Medline, Embase, Scopus, Web of Science, and Science Direct) and selected ten studies that met the inclusion criteria. The chosen studies have been classified according to their theoretical focus, methodology, and target population. RESULTS We found an increase in stress and a decrease in psychological well-being among individuals diagnosed with ASD (i.e., parents and caregivers). Additionally, in studies focused on children, youth, and adults with ASD diagnosis, the results are contradictory depending on variables such as age, ASD severity, or type of family structure. CONCLUSIONS The results show that the consequences of quarantine and social confinement are quite contradictory and depend on variables such as age, ASD severity, and family features.
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Affiliation(s)
| | | | | | | | - Francisco Alcantud-Marín
- PSiDEHESO Research Team, University of Valencia, 46010 Valencia, Spain; (Y.A.-E.); (M.F.L.-R.); (V.M.-C.); (E.N.-P.)
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Mann M, McMillan JE, Silver EJ, Stein REK. Children and Adolescents with Disabilities and Exposure to Disasters, Terrorism, and the COVID-19 Pandemic: a Scoping Review. Curr Psychiatry Rep 2021; 23:80. [PMID: 34643813 PMCID: PMC8511280 DOI: 10.1007/s11920-021-01295-z] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 09/11/2021] [Indexed: 01/15/2023]
Abstract
PURPOSE OF REVIEW This paper reviews the empirical literature on exposures to disaster or terrorism and their impacts on the health and well-being of children with disabilities and their families since the last published update in 2017. We also review the literature on studies examining the mental health and functioning of children with disabilities during the COVID-19 pandemic. RECENT FINDINGS Few studies have examined the effects of disaster or terrorism on children with disabilities. Research shows that children with disabilities and their families have higher levels of disaster exposure, lower levels of disaster preparedness, and less recovery support due to longstanding discriminatory practices. Similarly, many reports of the COVID-19 pandemic have documented its negative and disproportionate impacts on children with disabilities and their families. In the setting of climate change, environmental disasters are expected to increase in frequency and severity. Future studies identifying mitigating factors to disasters, including COVID-19; increasing preparedness on an individual, community, and global level; and evaluating post-disaster trauma-informed treatment practices are imperative to support the health and well-being of children with disabilities and their families.
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Affiliation(s)
- Mana Mann
- Department of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore, Bronx, NY USA
| | - Julia E. McMillan
- Department of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore, Bronx, NY USA
| | - Ellen J. Silver
- Department of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore, Bronx, NY USA
| | - Ruth E. K. Stein
- Department of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore, Bronx, NY USA
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Pellicano E, Brett S, den Houting J, Heyworth M, Magiati I, Steward R, Urbanowicz A, Stears M. COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2021; 26:914-927. [PMID: 34362263 DOI: 10.1177/13623613211035936] [Citation(s) in RCA: 45] [Impact Index Per Article: 11.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
LAY ABSTRACT In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.
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Affiliation(s)
- Elizabeth Pellicano
- Macquarie University, Australia.,Cooperative Research Centre for Living with Autism (Autism CRC), Australia
| | | | - Jacquiline den Houting
- Macquarie University, Australia.,Cooperative Research Centre for Living with Autism (Autism CRC), Australia
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Yılmaz B, Azak M, Şahin N. Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review. World J Psychiatry 2021; 11:388-402. [PMID: 34327131 PMCID: PMC8311509 DOI: 10.5498/wjp.v11.i7.388] [Citation(s) in RCA: 31] [Impact Index Per Article: 7.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/07/2021] [Revised: 03/26/2021] [Accepted: 06/03/2021] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Children diagnosed with autism spectrum disorder (ASD) may have great difficulties when their routines change, and this may affect the psychological well-being of their parents. For this reason, it is important to examine studies that address the mental health of parents in order to adapt to the coronavirus disease 2019 (COVID-19) pandemic. AIM To determine the mental health status of parents with children diagnosed with ASD in the COVID-19 pandemic. METHODS The study, which is a systematic review, was conducted between December 15, 2020 and December 30, 2020 by scanning articles in English. The Scopus, Science Direct, PubMed, Cochrane, Web of Science, and Google Scholar databases were used for scanning. The keywords COVID-19 AND ("autism" OR "autistic" OR "autism spectrum disorder") AND parent AND ("mental health" OR "anxiety" OR "stress") were used in the search process. The inclusion criteria in the study were findings regarding the mental health of parents with children diagnosed with ASD in the COVID-19 pandemic, addressing their anxiety and stress situations, being a research article, and accessing the full text of the article. RESULTS In the study, a total of 6389 articles were reached, and the full texts of 173 articles were evaluated for eligibility. After the articles excluded by the full-text search were eliminated, 12 studies involving 7105 parents were included in the analysis. The findings obtained from the articles containing data on mental health in the COVID-19 pandemic of parents with children with autism spectrum disorder were discussed in three groups. These were findings on the experiences of parents with children with ASD in the COVID-19 pandemic regarding the areas where parents with children with ASD need support in the COVID-19 pandemic and methods of coping with the COVID-19 pandemic for parents with children with ASD. In the systematic review, it was determined that the anxiety and stress of the parents increased, they needed more support compared to the pre-pandemic period, and they had difficulty coping. CONCLUSION In this systematic review, it was concluded that the COVID-19 pandemic negatively affected the mental health of the parents of children with ASD.
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Affiliation(s)
- Büşra Yılmaz
- Department of Women's Health and Gynecologic Nursing, Florence Nightingale Faculty of Nursing, Istanbul University-Cerrahpasa, Istanbul 34381, Turkey
| | - Merve Azak
- Department of Pediatric Nursing, Florence Nightingale Faculty of Nursing, Istanbul University- Cerrahpasa, Istanbul 34381, Turkey
| | - Nevin Şahin
- Department of Women's Health and Gynecologic Nursing, Florence Nightingale Faculty of Nursing, Istanbul University-Cerrahpasa, Istanbul 34381, Turkey
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Levante A, Petrocchi S, Bianco F, Castelli I, Colombi C, Keller R, Narzisi A, Masi G, Lecciso F. Psychological Impact of COVID-19 Outbreak on Families of Children with Autism Spectrum Disorder and Typically Developing Peers: An Online Survey. Brain Sci 2021; 11:808. [PMID: 34207173 PMCID: PMC8235600 DOI: 10.3390/brainsci11060808] [Citation(s) in RCA: 29] [Impact Index Per Article: 7.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/21/2021] [Revised: 06/11/2021] [Accepted: 06/15/2021] [Indexed: 11/19/2022] Open
Abstract
BACKGROUND When COVID-19 was declared as a pandemic, many countries imposed severe lockdowns that changed families' routines and negatively impacted on parents' and children's mental health. Several studies on families with children with autism spectrum disorder (ASD) revealed that lockdown increased the difficulties faced by individuals with ASD, as well as parental distress. No studies have analyzed the interplay between parental distress, children's emotional responses, and adaptive behaviors in children with ASD considering the period of the mandatory lockdown. Furthermore, we compared families with children on the spectrum and families with typically developing (TD) children in terms of their distress, children's emotional responses, and behavioral adaptation. METHODS In this study, 120 parents of children aged 5-10 years (53 with ASD) participated. RESULTS In the four tested models, children's positive and negative emotional responses mediated the impact of parental distress on children's playing activities. In the ASD group, parents reported that their children expressed more positive emotions, but fewer playing activities, than TD children. Families with children on the spectrum reported greater behavioral problems during the lockdown and more parental distress. CONCLUSIONS Our findings inform the interventions designed for parents to reduce distress and to develop coping strategies to better manage the caregiver-child relationship.
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Affiliation(s)
- Annalisa Levante
- Department of History, Society, and Human Studies, University of Salento, 73100 Lecce, Italy;
- Laboratory of Applied Psychology, Department of History, Society, and Human Studies, University of Salento, 73100 Lecce, Italy;
| | - Serena Petrocchi
- Laboratory of Applied Psychology, Department of History, Society, and Human Studies, University of Salento, 73100 Lecce, Italy;
- Faculty of Biomedical Sciences, Università della Svizzera Italiana, Via Buffi 13, 6900 Lugano, Switzerland
| | - Federica Bianco
- Department of Human and Social Sciences, University of Bergamo, 23129 Bergamo, Italy; (F.B.); (I.C.)
| | - Ilaria Castelli
- Department of Human and Social Sciences, University of Bergamo, 23129 Bergamo, Italy; (F.B.); (I.C.)
| | - Costanza Colombi
- IRCCS Stella Maris Foundation, 56018 Pisa, Italy; (C.C.); (A.N.); (G.M.)
- Department of Psychiatry, University of Michigan, Ann Arbor, MI 48109, USA
| | - Roberto Keller
- Adult Autism Center, Mental Health Department, Local Health Unit ASL Città di Torino, 10138 Turin, Italy;
| | - Antonio Narzisi
- IRCCS Stella Maris Foundation, 56018 Pisa, Italy; (C.C.); (A.N.); (G.M.)
| | - Gabriele Masi
- IRCCS Stella Maris Foundation, 56018 Pisa, Italy; (C.C.); (A.N.); (G.M.)
| | - Flavia Lecciso
- Department of History, Society, and Human Studies, University of Salento, 73100 Lecce, Italy;
- Laboratory of Applied Psychology, Department of History, Society, and Human Studies, University of Salento, 73100 Lecce, Italy;
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Kim MA, Yi J, Sung J, Hwang S, Howey W, Jung SM. Changes in life experiences of adults with intellectual disabilities in the COVID-19 pandemics in South Korea. Disabil Health J 2021; 14:101120. [PMID: 34074618 DOI: 10.1016/j.dhjo.2021.101120] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/05/2021] [Revised: 05/12/2021] [Accepted: 05/14/2021] [Indexed: 11/28/2022]
Abstract
BACKGROUND The COVID-19 pandemic has had a significant impact on adults with intellectual disabilities who are dependent on community services. OBJECTIVE This study explored the experiences of adults with intellectual disabilities from their perspective during the COVID-19 pandemic in South Korea, where most community-based services were suspended. METHODS We conducted in-depth interviews with 15 adults with intellectual disabilities who lost access to services during COVID-19 pandemic. Inductive thematic analysis was conducted. RESULTS Five overarching themes emerged: changes in (a) daily life, (b) health behaviors, (c) family relationships, (d) social relationships, and (e) social participation. Most participants experienced the loss of daily routines and healthy behaviors, family conflicts, and social isolation, but they also developed new ways of adapting and finding a new normal. CONCLUSIONS The findings offer valuable evidence of ways to develop and stabilize community-based services during a pandemic, with insights into the experiences of people with intellectual disabilities.
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Affiliation(s)
- Min Ah Kim
- Department of Social Welfare, Sungkyunkwan University, Seoul, Republic of Korea.
| | - Jaehee Yi
- College of Social Work, University of Utah, Utah, USA.
| | - Jimin Sung
- Department of Social Welfare, Sungkyunkwan University, Seoul, Republic of Korea.
| | - Shinyeong Hwang
- Department of Social Welfare, Sungkyunkwan University, Seoul, Republic of Korea.
| | - Whitney Howey
- College of Social Work, University of Utah, Utah, USA.
| | - Sang Mi Jung
- Planning and Strategy Team, Anyang Gwanak Welfare Center for the Disabled, Anyang, Republic of Korea.
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Heyworth M, Brett S, den Houting J, Magiati I, Steward R, Urbanowicz A, Stears M, Pellicano E. "It just fits my needs better": Autistic students and parents' experiences of learning from home during the early phase of the COVID-19 pandemic. AUTISM & DEVELOPMENTAL LANGUAGE IMPAIRMENTS 2021; 6:23969415211057681. [PMID: 36381526 PMCID: PMC9620701 DOI: 10.1177/23969415211057681] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Indexed: 06/16/2023]
Abstract
Background and aims The COVID-19 pandemic has caused unprecedented disruption to people's lives, especially for families, whose children have been taken out of schools during lockdown restrictions and required to learn from home. Little is known, however, about the perceived impact of the lockdown restrictions on the educational experiences of autistic children and young people - a group whose conventional schooling experiences are already often challenging. In this study, we sought to (1) understand these experiences from the perspectives of autistic young people and their parents, and (2) identify the underlying sources of positive experiences at this challenging time, in order to inform the ways in which autistic children might flourish at school in more normal times. Methods Ninety-one Australian participants, including 16 autistic young people aged 12-18 years, 32 autistic parents and 43 non-autistic parents of autistic young people aged 3-18 years, took part in semi-structured interviews about their experiences of life during the initial phase of the COVID-19 pandemic. The interviews were subjected to reflexive, thematic analysis to identify themes and subthemes for each research question. Results Overall, our participants initially found the transition to learning from home extremely challenging, with parents reporting that the support received from schools was far from adequate. After that initial period of transition, however, many autistic children reported flourishing at home both educationally and personally. For these children and families, we identified three key ingredients essential to this flourishing, including: (i) the importance of connected, trusting relationships ('people'); (ii) the sensory and social safety of home ('place'); and (iii) the flexibility to pace and structure learning to suit the individual child ('time'). Conclusions While the initial COVID-19 lockdown presented many challenges to children learning at home, there were aspects of this otherwise-unsettling situation that enabled children to thrive and from which we can learn for the future. Implications These findings have important implications for understanding how and when autistic children might thrive in institutional educational settings once the pandemic subsides, focusing on the relationships between teachers and students, the nature of the physical learning environment and the need for greater flexibility in planning the school day.
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Affiliation(s)
- Melanie Heyworth
- Macquarie School of Education, Macquarie University, Sydney, Australia
- Reframing Autism
| | - Simon Brett
- Macquarie School of Education, Macquarie University, Sydney, Australia
| | - Jacquiline den Houting
- Macquarie School of Education, Macquarie University, Sydney, Australia
- Cooperative Research Centre for Living
with Autism (Autism CRC), Brisbane, Queensland, Australia
| | - Iliana Magiati
- School of Psychological Science, University of Western
Australia, Perth, Australia
| | | | | | - Marc Stears
- Sydney Policy Lab, University of Sydney, Australia
| | - Elizabeth Pellicano
- Macquarie School of Education, Macquarie University, Sydney, Australia
- Cooperative Research Centre for Living
with Autism (Autism CRC), Brisbane, Queensland, Australia
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