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Home education for children with autism spectrum disorder during the COVID-19 pandemic: Indonesian mothers experience Series: Research in Developmental Disabilities ; 114 103954: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221001037
- This study aimed to explore the experiences of mothers and efforts in implementing home education for children with autism, during the COVID-19 pandemic in Indonesia. Five mothers were recruited as participants and interviewed online, as the data obtained were examined through the use of thematic analysis. Also, three main themes were shown, (1) Mothers' experience in implementing home education, as regards adaptability and burden of caregiving, (2) The constraints in home education implementation, as regards maladaptive behaviours of ASD and emerging negative emotions, (3) The efforts to alleviate barriers, as regards problem-focused and religious copings. Also, the implementation of home education during the pandemic was less than optimal, due to the increase in maladaptive behaviours of the autistic children, low adaptability, the burden of caregiving, and emerging negative emotions. Appropriate coping strategies were also observed to help mothers in alleviating the constraints to implementing home education and parenting stress.
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How COVID-19 May Change the World of Services to People With Intellectual and Developmental Disabilities Series: Intellectual and Developmental Disabilities ; 58 (5) 355-360: 2020- https://ihc.idm.oclc.org/login?url=https://www.aaiddjournals.org/doi/abs/10.1352/1934-9556-58.5.355
- The COVID-19 epidemic caused disruption and dislocation in the lives of people with disabilities, their families, and providers. What we have learned during this period regarding the strengths and weaknesses of the service system for people with disabilities should provide a roadmap for building a more robust and agile system going forward. Based on a canvas of leaders in our field, I propose a way of outlining a reimagined system.
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How have youth with Autism Spectrum Disorder managed quarantine derived from COVID-19 pandemic? An approach to families perspectives Series: Research in Developmental Disabilities ; 110 103860: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221000093
- Quarantine derived from COVID-19 pandemic has challenged children and adolescents with Autism Spectrum Disorder (ASD) and their families daily life and routines. Because of these children unique needs related to manage uncertainty and overcoming situations, an in-depth approach to how they navigated through quarantine urged to better comprehend their current support needs. Forty-seven families with a child with ASD ranging in age between 2 and 17 years old (M = 7.3, SD = 3.4) from the north of Spain responded to an online developed questionnaire on different aspects of their daily life management of quarantine. Most of the families stressed that their offspring better drove quarantine than expected. Some families reported that youth participated more often in families' routines and were more communicative with their parents. Families, beyond some difficulties aroused, had more time to qualitatively spend with their children to teach new skills as autonomy or house care related skills. Families also developed new strategies to manage quarantine, such as structuring their days, using visual supports or new technologies for learning or leisure, and found more useful in this effort their family cohesion, online contact with relatives, and having online psychological supports.
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How is COVID-19 Affecting the Mental Health of Children with Special Educational Needs and Disabilities and Their Families? Series: Journal of Autism and Developmental Disorders ; 51 (5) 1772-1780: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-020-04577-2
- Parents of children with Special Educational Needs and Disabilities in the UK (n = 241) were asked to describe the impact of COVID-19 on their own mental health and that of their child. An inductive content analysis of the data was undertaken. Both parents and children appear to be experiencing loss, worry and changes in mood and behaviour as a result of the rapid social changes that have occurred. Some parents reported feeling overwhelmed and described the impact of child understanding and awareness. Finally, a minority of parents reported that COVID-19 has had little impact on mental health in their family, or has even led to improvements. Implications for how to support these families in the immediate future are discussed.
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Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs Series: Research in Developmental Disabilities ; 107 103790: 2020- https://ihc.idm.oclc.org/login?url=http://www.sciencedirect.com/science/article/pii/S0891422220302225
- Background While COVID-19 outbreak has had adverse psychological effects in children with special needs, the mental state and burden on their caregivers during this pandemic has yet to be reported. Aims The objectives of this study were to describe the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak. Methods and procedures Two hundred sixty four caregivers completed an online survey that assessed demographics, use and perspective on tele-rehabilitation, homecare therapy, caregiver's strain and mental health. Outcomes and results The prevalence of depression, anxiety and stress symptoms were found to be 62.5 %, 20.5 % and 36.4 % respectively. A significant difference in caregiver strain (p < 0.001, effect size = 0.93) was observed during the outbreak compared to levels pre-outbreak (pre-outbreak strain was measured retrospectively). Caregivers not using tele-rehabilitation along with a perception of it being a poor medium for rehabilitation were at greater risks for poor mental health whereas a negative perception on homecare therapy were strongly associated with higher psychological symptoms and strain. Conclusions and implications This study identified a high prevalence of depression and significant change in strain displayed by caregivers during the COVID-19 outbreak. We identified several factors associated with poor mental health and perceived strain that can be used to help safeguard caregivers.
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In response to "Decommissioning normal: COVID-19 as a disruptor of school norms for young people with learning disabilities" Series: British Journal of Learning Disabilities ; 49 (4) 403-405: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12422
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Innovative response initiatives in the European Union to mitigate the effects of COVID-19 Series: Journal of Enabling Technologies ; 15 (1) 40-52: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/JET-09-2020-0039
- Purpose The COVID-19 pandemic has significantly impacted the European Union (EU) through heavy pressure on health services, business activity and people's life. To mitigate these effects, government agencies, civil society and the private sector are working together in proposing innovative initiatives. In this sense, this study aims to characterize and explore the relevance of these projects to mitigate the effects of COVID-19. Design/methodology/approach The Observatory of Public Sector Innovation provided by the Organization for Economic Co-operation and Development was considered to enable the identification and exploration of innovative projects to combat COVID-19. A methodology based on mixed methods is adopted to initially identify quantitatively the distribution of these projects, followed by a qualitative approach based on thematic analysis that allows exploring their relevance. Findings A total of 206 initiatives in the EU have been identified. The distribution of these projects is quite asymmetric, with Portugal and Austria totaling 33.52% of these projects. Most of these projects focus on the areas of public health, infection detection and control, virtual education, local commerce, digital services literacy, volunteering and solidarity and hackathons. Originality/value This work is relevant to identifying and understanding the various areas in which COVID-19 initiatives have been developed. This information is of great relevance for the actors involved in this process to be able to replicate these initiatives in their national, regional and local contexts.
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Lessons learned: what the COVID-19 global pandemic has taught us about teaching, technology, and students with autism spectrum disorder Series: Journal of Enabling Technologies ; 15 (2) 108-116: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/JET-12-2020-0053
- Purpose The purpose of this paper is to examine the impact of the abrupt transition from attending school face-to-face to participating in online learning in response to the COVID-19 pandemic as reported by a parent of a student with autism spectrum disorder (ASD). Design/methodology/approach A phone interview was conducted with the parent of a child with ASD. The semi-structured interview focused on how the child's family was impacted when classes shifted to virtual from face-to-face learning in response to the COVID-19 pandemic. Findings A total of four themes emerged from the interview. Three of these included adjustments to changes in routines and roles, instruction, and social interactions. A final theme involved the benefits and challenges that emerged following the transition to online learning for students with ASD. While we are in an unprecedented time with the COVID-19 global pandemic presenting understandable challenges, opportunities for and examples of effective virtual learning environments for students with ASD were reported in the parent interview and supported by the literature. Practical implications This research provides insight regarding the impact of COVID-19 and highlights elements that should be considered involving technology for students with ASD. Increased awareness regarding the benefits and contraindications of technology while teaching students with ASD can minimize the adverse effects and enhance the positive impact of technology in students with ASD. Originality/value This paper shares the experiences of one parent of a child with ASD and their experiences with technology and learning during COVID-19.
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Masks in the time of COVID-19 as an inadvertent simulation of facial paralysis Series: Disability & Society ; 36 (5) 840-843: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/09687599.2021.1899898
- New face mask requirements to slow the spread of COVID-19 have complex ramifications on stigma for people who have facial paralysis or facial difference. The author, a psychology researcher who has facial paralysis, links her research and insight into adapting to and destigmatizing facial paralysis to the COVID-19 pandemic. Masks render this visible disability nearly invisible, potentially undermining adaptation and identity. While people without facial paralysis are suddenly experiencing restricted facial expressions, people with facial paralysis are skilled in alternative expression (i.e. communicating with gesture, posture, and prosody). Disability simulations such as this increase non-disabled people's frustration and pity by simulating the immediate acquisition of a disability unless they showcase the adaptations disabled people develop over time. There is an opportunity to destigmatize people with facial paralysis and other disabilities by learning from their adaptations.
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My Son Can't Socially Distance or Wear a Mask: How Families of Preschool Children with Severe Developmental Delays and Challenging Behavior Experienced the COVID-19 Pandemic Series: Journal of Mental Health Research in Intellectual Disabilities ; 14 (2) 225-236: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/19315864.2021.1874578
- Background: Families of children with developmental delays (DD) prior to the COVID-19 pandemic experienced inequalities in accessing health and social care services. Measures put in place to combat the spread of the coronavirus have potentially exacerbated existing inequalities and have led to additional pressures for these families.Methods: We carried out a cross-sectional online survey of parents of young children with moderate to severe DD and challenging behaviors living in England, UK. We asked about the impact the pandemic has had on their family well-being, receipt of support, and post COVID-19 concerns.Results: Eighty-eight parents who are participants in an ongoing clinical trial (EPICC-ID) reported a broad range of challenges they faced during the pandemic: lack of information specific to children with DD; difficulties following social distancing and isolation rules; disruption or pause of health and social care services; deterioration in parental mental health and regression of the child's skills. Future access to services, negative long-term impact of school closures, parental unemployment were the parents' main post-COVID-19 concerns.Conclusions: Families of children with significant developmental delays fear lasting impact of the pandemic on their own psychological and material wellbeing and on their child's health. These families require urgent help to meet major health and social care needs and should be prioritized within an overall children's mental health strategy.The article includes a commentary from parents with lived experience.
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Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis Series: Journal of Autism and Developmental Disorders ; 51 (8) 2920-2928: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1007/s10803-020-04760-5
- Caring for an individual with autism spectrum disorder (ASD) in ideal circumstances can be stressful, and the Coronavirus disease (COVID-19) pandemic created a high degree of disruption to life and stress to families living with an individual with ASD. We conducted an online survey of families in Michigan that revealed higher levels of stress in caregivers of younger individuals with ASD and those with greater severity of ASD symptoms. Stress around therapeutic service disruption, finances, and illness predominated and greater stress was reported for caregivers of individuals receiving greater intensity of services pre-COVID-19. Respondents voiced concerns about receiving respite care during COVID-19, and those expressing interest in respite also reported greater symptom severity in the person with ASD.
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Psychological distress and burden among family caregivers of children with and without developmental disabilities six months into the COVID-19 pandemic Series: Research in Developmental Disabilities ; 114 103983: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221001323
- The COVID-19 pandemic has created unique challenges for family caregivers of children with developmental disabilities (DD). The purpose of this study was to conduct a 6-month follow-up on the experiences of caregiver burden and psychological distress among caregivers of children with autism (ASD) and/or attention deficit hyperactivity disorder (ADHD) during COVID-19 pandemic, compare their experiences to caregivers of children without DD, and test the interaction between opportunities for self-care and caregiver burden and psychological distress. Results indicated caregivers of children with ASD/ADHD continued to report significantly higher levels of psychological distress and caregiver burden compared to caregivers of children without DD. Counter to study hypotheses decreased opportunities to engage in self-care as a result of the pandemic predicted higher levels of psychological distress and caregiver burden for caregivers of children without DD, whereas only caregiver burden was moderated by self-care for caregivers of children with ASD/ADHD. Overall, the COVID-19 pandemic is continuing to negatively impact the psychological health of family caregivers of school-age children. In general, greater challenges are presented for caregivers of children with ASD/ADHD, but they seem to be more resilient to some COVID-19 challenges than caregivers of children without DD.
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Psychological impact of Covid-19 pandemic in Italian families of children with neurodevelopmental disorders Series: Research in Developmental Disabilities ; 109 103840: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422220302729
- Research on the psychological impact of the COVID-19 pandemic highlighted negative effects on the general population and particularly on parents. However, little is known about families of children with Neurodevelopmental Disorder (NDD). The present study investigated parental stress, coparenting, and child adjustment in Italian families with children with NDD (N = 82) and typical developing children (TD, N = 82) during lockdown, using an online survey. Results of quantitative analyses showed a significant increase in parental stress and child externalizing behaviors, but not of coparenting. Parental stress is predicted by externalizing behaviors, and coparenting acted as a moderator in the relationship between the change in the amount of time spent with the children before and during lockdown and parental stress. In children with NDD, the decrease in therapeutic/rehabilitation support predicted higher externalizing behaviors. Qualitative analysis showed that beyond the difficulties and worries arising during lockdown, most of the parents appreciated the opportunity of spending more time with their children and strengthening the parent-child relationship. In conclusion, our results point out the importance of ensuring continuity of care for children with NDD (e.g. telehealth) during home confinement and of providing psychological support for parents.
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Staying connected during COVID-19: Family engagement with adults with developmental disabilities in supported accommodation Series: Research in Developmental Disabilities ; 108 103812: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422220302444
- Background Enduring family engagement and informal support is crucial to the health and well-being of adults with developmental disabilities (DD) residing in supported accommodation. The COVID-19 pandemic and restrictive measures enforced in residential settings have resulted in changes in daily routine and modified the ways families can interact with and provide support to residents. Yet, the impact of these changes has not been empirically explored. Aim Explore how family caregivers have interacted with and supported their relatives with DD residing in supported accommodation during the pandemic. Methods Changes in frequencies of communication modes and types of informal support were measured through a cross‐sectional and anonymous online survey which completed by 108 family caregivers of adults with DD. Results Most family caregivers adopted remote communication technologies; however, these were not perceived to be effective in filling the gap created by reduced face-to-face contact. While families were able to provide emotional support and advocacy using digital technologies, they were limited in their ability to provide significant social support. Conclusions Findings may help key stakeholders develop and implement novel strategies and policies to accommodate the changing circumstances and to ensure continuity of family engagement and informal support in the context of COVID-19.
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The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period Series: Journal of Applied Research in Intellectual Disabilities ; 34 (6) 1421-1430: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12884
- Background Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.
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The global COVID-19 Disability Rights Monitor: implementation, findings, disability studies response Series: Disability & Society ; 36 (8) 1356-1361: 2021- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1080/09687599.2021.1920371
- The global COVID-19 Disability Rights Monitor (COVID-19 DRM) has revealed major injustices suffered by disabled people around the world during the first stage of the pandemic, including enhanced institutionalisation, breakdown of essential services in the community, multiplication of intersectional harms, and denial of access to healthcare. In this paper, we present an overview of the COVID-19 DRM and its findings. We also offer a disability studies response by making recourse to the social model of disability, independent living philosophy, and analyses of biopolitics. We argue that the COVID-19 DRM illuminates systemic flaws that predate the pandemic, and that it is these flaws that need to be addressed in post-pandemic efforts at reconstruction.
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The hidden inequalities of COVID-19 Series: Autism ; 24 (6) 1309-1310: 2020- https://ihc.idm.oclc.org/login?url=https://journals.sagepub.com/doi/full/10.1177/1362361320927590
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The impact of COVID-19 on the social inclusion of older adults with an intellectual disability during the first wave of the pandemic in Ireland Series: Journal of Intellectual Disability Research ; 65 (10) 879-889: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12862
- Background Social restrictions and service closures from COVID-19 have negatively impacted social inclusion and well-being for some people with intellectual disabilities (IDs). Methods The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID-19 outbreak. Social inclusion data for pre-existing participants interviewed before COVID-19 (n = 444) were compared with data for pre-existing participants interviewed during/after lockdown (n = 62). Results More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post-lockdown group reported access to and use of technology than the pre-lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. Conclusions During the early stages of the COVID-19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID-19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID-19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections.
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The impact of the COVID-19 pandemic on the health, wellbeing, and access to services of people with intellectual and developmental disabilities Series: Research in Developmental Disabilities ; 114 103985: 2021- https://ihc.idm.oclc.org/login?url=https://www.sciencedirect.com/science/article/pii/S0891422221001347
- Background Individuals with intellectual and developmental disabilities (IDD) may be especially vulnerable to changes associated with the COVID-19 pandemic given an increased likelihood of health concerns, low socioeconomic status, and difficulty accessing services. Aims The purpose of this study was to explore mental health problems and services in individuals with IDD during the pandemic. We explored whether number of mental health problems differed by disability, age, gender, living situation, physical health, and access to services. Methods and procedures An online survey about experiences during the pandemic was administered to adults with IDD and their caregivers in the United States and in Chile. Outcomes and results In both Chile and the United States, few people endorsed increased health problems. Half of the sample in Chile and 41 % of the sample in the United States endorsed increased mental health problems. Approximately 15 % of the sample in the US reported no longer receiving state developmental disability services. Conclusions and implications Healthcare and disability-specific agencies should consider strategies to tailor supports to improve mental health functioning and access to community.
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The possibility and importance of immersive technologies during COVID-19 for autistic people Series: Journal of Enabling Technologies ; 14 (3) 187-199: 2020- https://ihc.idm.oclc.org/login?url=https://doi.org/10.1108/JET-07-2020-0028
- Purpose The purpose of this paper is to identify three key areas where autistic people may find themselves impacted through COVID-19, namely, education; employment; and anxiety. Design/methodology/approach This paper provides some views based on the extensive experience of using immersive technologies for the utilisation and application with autistic groups during COVID-19. Findings This paper offers some examples of immersive technology application that might be helpful for practitioners, services and others to consider in overcoming possible challenges faced by people with autism. Originality/value This opinion piece offers expert insights to the role immersive technologies and virtual reality might play during COVID-19 in the lives of autistic groups.
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