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      Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review

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          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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          Most cited references48

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          Immediate Psychological Responses and Associated Factors during the Initial Stage of the 2019 Coronavirus Disease (COVID-19) Epidemic among the General Population in China

          Background: The 2019 coronavirus disease (COVID-19) epidemic is a public health emergency of international concern and poses a challenge to psychological resilience. Research data are needed to develop evidence-driven strategies to reduce adverse psychological impacts and psychiatric symptoms during the epidemic. The aim of this study was to survey the general public in China to better understand their levels of psychological impact, anxiety, depression, and stress during the initial stage of the COVID-19 outbreak. The data will be used for future reference. Methods: From 31 January to 2 February 2020, we conducted an online survey using snowball sampling techniques. The online survey collected information on demographic data, physical symptoms in the past 14 days, contact history with COVID-19, knowledge and concerns about COVID-19, precautionary measures against COVID-19, and additional information required with respect to COVID-19. Psychological impact was assessed by the Impact of Event Scale-Revised (IES-R), and mental health status was assessed by the Depression, Anxiety and Stress Scale (DASS-21). Results: This study included 1210 respondents from 194 cities in China. In total, 53.8% of respondents rated the psychological impact of the outbreak as moderate or severe; 16.5% reported moderate to severe depressive symptoms; 28.8% reported moderate to severe anxiety symptoms; and 8.1% reported moderate to severe stress levels. Most respondents spent 20–24 h per day at home (84.7%); were worried about their family members contracting COVID-19 (75.2%); and were satisfied with the amount of health information available (75.1%). Female gender, student status, specific physical symptoms (e.g., myalgia, dizziness, coryza), and poor self-rated health status were significantly associated with a greater psychological impact of the outbreak and higher levels of stress, anxiety, and depression (p < 0.05). Specific up-to-date and accurate health information (e.g., treatment, local outbreak situation) and particular precautionary measures (e.g., hand hygiene, wearing a mask) were associated with a lower psychological impact of the outbreak and lower levels of stress, anxiety, and depression (p < 0.05). Conclusions: During the initial phase of the COVID-19 outbreak in China, more than half of the respondents rated the psychological impact as moderate-to-severe, and about one-third reported moderate-to-severe anxiety. Our findings identify factors associated with a lower level of psychological impact and better mental health status that can be used to formulate psychological interventions to improve the mental health of vulnerable groups during the COVID-19 epidemic.
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            The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement: guidelines for reporting observational studies.

            Much biomedical research is observational. The reporting of such research is often inadequate, which hampers the assessment of its strengths and weaknesses and of a study's generalisability. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Initiative developed recommendations on what should be included in an accurate and complete report of an observational study. We defined the scope of the recommendations to cover three main study designs: cohort, case-control, and cross-sectional studies. We convened a 2-day workshop in September 2004, with methodologists, researchers, and journal editors to draft a checklist of items. This list was subsequently revised during several meetings of the coordinating group and in e-mail discussions with the larger group of STROBE contributors, taking into account empirical evidence and methodological considerations. The workshop and the subsequent iterative process of consultation and revision resulted in a checklist of 22 items (the STROBE Statement) that relate to the title, abstract, introduction, methods, results, and discussion sections of articles. 18 items are common to all three study designs and four are specific for cohort, case-control, or cross-sectional studies. A detailed Explanation and Elaboration document is published separately and is freely available on the Web sites of PLoS Medicine, Annals of Internal Medicine, and Epidemiology. We hope that the STROBE Statement will contribute to improving the quality of reporting of observational studies.
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              Mitigate the effects of home confinement on children during the COVID-19 outbreak

              In response to the coronavirus disease 2019 (COVID-19) outbreak, the Chinese Government has ordered a nationwide school closure as an emergency measure to prevent spreading of the infection. Public activities are discouraged. The Ministry of Education estimates that more than 220 million children and adolescents are confined to their homes; this includes 180 million primary and secondary students and 47 million preschool children). 1 Thanks to the strong administrative system in China, the emergency home schooling plan has been rigorously implemented. 2 Massive efforts are being made by schools and teachers at all levels to create online courses and deliver them through TV broadcasts and the internet in record time. The new virtual semester has just started in many parts of the country, and various courses are offered online in a well organised manner. These actions are helping to alleviate many parents' concerns about their children's educational attainment by ensuring that school learning is largely undisrupted. Although these measures and efforts are highly commendable and necessary, there are reasons to be concerned because prolonged school closure and home confinement during a disease outbreak might have negative effects on children's physical and mental health.3, 4 Evidence suggests that when children are out of school (eg, weekends and summer holidays), they are physically less active, have much longer screen time, irregular sleep patterns, and less favourable diets, resulting in weight gain and a loss of cardiorespiratory fitness.3, 5 Such negative effects on health are likely to be much worse when children are confined to their homes without outdoor activities and interaction with same aged friends during the outbreak. Perhaps a more important but easily neglected issue is the psychological impact on children and adolescents. Stressors such as prolonged duration, fears of infection, frustration and boredom, inadequate information, lack of in-person contact with classmates, friends, and teachers, lack of personal space at home, and family financial loss can have even more problematic and enduring effects on children and adolescents. 4 For example, Sprang and Silman 6 showed that the mean posttraumatic stress scores were four times higher in children who had been quarantined than in those who were not quarantined. Furthermore, the interaction between lifestyle changes and psychosocial stress caused by home confinement could further aggravate the detrimental effects on child physical and mental health, which could cause a vicious circle. To mitigate the consequences of home confinement, the government, non-governmental organisations (NGOs), the community, school, and parents need to be aware of the downside of the situation and do more to effectively address these issues immediately. Experiences learned from previous outbreaks can be valuable for designing a new programme to tackle these issues in China. 7 The Chinese Government needs to raise the awareness of potential physical and mental health impacts of home confinement during this unusual period. The government should also provide guidelines and principles in effective online learning and ensure that the contents of the courses meet the educational requirements. Yet it is also important not to overburden the students. The government might mobilise existing resources, perhaps involving NGOs, and create a platform for gathering the best online education courses about healthy lifestyle and psychosocial support programmes available for schools to choose from. For example, in addition to innovative courses for a better learning experience, promotional videos can be useful to motivate children to have a healthy lifestyle at home by increasing physical activities, having a balanced diet, regular sleep pattern, and good personal hygiene. 8 To make these educational materials truly effective, they must be age-appropriate and attractive. They require professional expertise and real resources to create. Communities can serve as valuable resources in managing difficulties of family matters. For instance, parents' committees can work together to bridge the needs of students with school requirements and to advocate for children's rights to a healthy lifestyle. Psychologists can provide online services to cope with mental health issues caused by domestic conflicts, tension with parents, and anxiety from becoming infected. 7 Social workers can play an active role in helping parents cope with family issues arising from the situation, when needed. Such a social safety net could be particularly useful for disadvantaged or single-parent families, 9 but action is needed to make it accessible to them. Schools have a critical role, not only in delivering educational materials to children, but in offering an opportunity for students to interact with teachers and obtain psychological counselling. Schools can actively promote a health-conscious schedule, good personal hygiene, encourage physical activities, appropriate diet, and good sleep habits, and integrate such health promotion materials into the school curriculum. 3 A Chinese child studies from home during the COVID-19 outbreak © 2020 Fan Jiang 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active. In the event of home confinement, parents are often the closest and best resource for children to seek help from. Close and open communication with children is the key to identifying any physical and psychological issues and to comforting children in prolonged isolation.10, 11 Parents are often important role models in healthy behaviour for children. Good parenting skills become particularly crucial when children are confined at home. Besides monitoring child performance and behaviour, parents also need to respect their identity and needs, and they need to help children develop self-discipline skills. Children are constantly exposed to epidemic-related news, so having direct conversations with children about these issues could alleviate their anxiety and avoid panic.10, 11 Home confinement could offer a good opportunity to enhance the interaction between parents and children, involve children in family activities, and improve their self-sufficiency skills. With the right parenting approaches, family bonds can be strengthened, and child psychological needs met. 12 Since the COVID-19 epidemic is no longer confined to China, 13 school closure and home confinement-related issues also become relevant in other affected countries. As children are vulnerable to environmental risks and their physical health, mental health, and productivity in adult life is deeply rooted in early years, 14 close attention and great efforts are required to address these emergency issues effectively and avoid any long-term consequences in children. Any sustainable programme must involve local professionals to culturally adapt the interventions to the administrative system and to the regional and community environment, and it must develop contextually relevant material for children and adolescents. 7 Finally, children have little voices to advocate for their needs. The latest Commission 14 on the future of the world's children urges a holistic strategy in preparing for the uncertainty that all children are facing. It is the responsibility and keen interests of all stakeholders, from governments to parents, to ensure that the physical and mental impacts of the COVID-19 epidemic on children and adolescents are kept minimal. Immediate actions are warranted.
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                Author and article information

                Contributors
                Journal
                World J Psychiatry
                WJP
                World Journal of Psychiatry
                Baishideng Publishing Group Inc
                2220-3206
                19 July 2021
                19 July 2021
                : 11
                : 7
                : 388-402
                Affiliations
                Department of Women's Health and Gynecologic Nursing, Florence Nightingale Faculty of Nursing, Istanbul University-Cerrahpasa, Istanbul 34381, Turkey
                Department of Pediatric Nursing, Florence Nightingale Faculty of Nursing, Istanbul University- Cerrahpasa, Istanbul 34381, Turkey. merve.azak@ 123456iuc.edu.tr
                Department of Women's Health and Gynecologic Nursing, Florence Nightingale Faculty of Nursing, Istanbul University-Cerrahpasa, Istanbul 34381, Turkey
                Author notes

                Author contributions: Yılmaz B, Azak M, and Şahin N contributed to the study design, data collection, and manuscript writing; Yılmaz B and Azak M conducted the data analyses; Şahin N supervised study and made critical revisions for important intellectual content; All authors read and approved the final manuscript.

                Corresponding author: Merve Azak, MSc, RN, BSN, Research Assistant, Department of Pediatric Nursing, Florence Nightingale Faculty of Nursing, Istanbul University- Cerrahpasa, Abide-i Hurriyet St. Sisli, Istanbul 34381, Turkey. merve.azak@ 123456iuc.edu.tr

                Article
                jWJP.v11.i7.pg388
                10.5498/wjp.v11.i7.388
                8311509
                34327131
                cf22471f-f684-4711-9bb5-1da99711c7b3
                ©The Author(s) 2021. Published by Baishideng Publishing Group Inc. All rights reserved.

                This article is an open-access article that was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/Licenses/by-nc/4.0/

                History
                : 7 February 2021
                : 26 March 2021
                : 3 June 2021
                Categories
                Systematic Reviews

                autism spectrum disorder,covid-19,mental health,pandemic,parents

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