Staying connected during COVID-19: Family engagement with adults with developmental disabilities in supported accommodation

Araten‐Bergman, Tal; Shpigelman, Carmit‐Noa

doi:10.1016/j.ridd.2020.103812

Cited by 36 publications

(32 citation statements)

References 27 publications

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“…Data from research studies reflect concerns similar to those expressed in clinician opinion pieces. Over a 15‐month period, several studies explored the impacts of pandemic‐related closures and restrictions on the mental health and well‐being of people with ID from numerous countries, including Chile (Rosencrans et al, 2021 ), Italy (Zingale et al, 2020 ), South Korea (Kim et al, 2021 ), United Kingdom (Courtenay, 2020 ; Courtenay & Perera, 2020 ; McKenzie et al, 2021 ; Murray et al, 2021 ; Rawlings et al, 2021 ; Willner et al, 2020 ), United States (Jeste et al, 2020 ), Canada (Lake et al, 2021 ), Ireland (McCarron et al, 2020 ; McCausland et al, 2021 ), France (Nollace et al, 2020 ), Spain (Amor et al, 2021 ; Navas, Amor, et al, 2021 ), Netherlands (Embregts et al, 2020 ; Scheffers et al, 2021 ; Schuengel et al, 2020 ; Zaagsma et al, 2020 ), and Israel (Araten‐Bergman & Shpigelman, 2021 ). To date, there has been a prominent focus on the challenges experienced by children and youth with ID and their families as a result of pandemic response plans, such as the transition of in‐person learning to virtual education.…”

Section: Methodsmentioning

confidence: 99%

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Lunsky

Jahoda

Navas

et al. 2022

Policy Practice Intel Disabi

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Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic‐based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.

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Section: Methodsmentioning

confidence: 99%

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Lunsky

Jahoda

Navas

et al. 2022

Policy Practice Intel Disabi

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“…Nevertheless, and despite having been the target of a larger number of stressors, the families of people with disabilities claim to have lost formal and informal support during the pandemic (e.g., Colizzi et al, 2020; Lučić et al, 2020). In fact, families report to have experienced constraints and limitations in relation to the availability and delivery of services and resources during the pandemic and, especially, throughout the home confinement period (Alhuzimi, 2021; Araten‐Bergman & Shpigelman, 2021; Asbury et al, 2021; Cacioppo et al, 2020; Colizzi et al, 2020; Eshraghi et al, 2020; Greenway & Eaton‐Thomas, 2020; Grumi et al, 2021; Lee et al, 2020; Linehan et al, 2020; Lučić et al, 2020; Neece et al, 2020; Redquest et al, 2021; Rose et al, 2020; Saline, 2021; Simón et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

Impact of COVID‐19 on the burden of care of families of people with intellectual and developmental disabilities

Navas

Verdugo

Martínez

et al. 2021

Research Intellect Disabil

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Aim This study analysed the impact that COVID‐19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. Method Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing difficulties experienced and service provision during lockdown. Results Many families (66.3%) have seen their level of stress increased during lockdown because of, among other reasons, a greater burden of care. Difficulties were associated with the closure and changes in disability‐related services. Families of people with extensive support needs have generally experienced greater difficulties. Conclusion Support services should have been considered essential services during lockdown. The failure to receive support has resulted in excessive burden on families, who had to assume a multitude of roles to support their family member with intellectual and developmental disability.

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“…Measures to contain the spread of COVID-19, as well as increased pressure on health systems, have resulted in significant disruptions for AT users, with a key contributing factor being the distance to centralized services. AT provision can be supported by family efforts, through virtual social networks, and by replacing face to face activities with tele-enabled activities [ 30 , 53 ]. However, there are risks for vulnerable populations such as AT users of accentuated health disparities as clinic-based services switch to telemedicine [ 10 ], an issue of concern to some of our respondents without reliable or affordable connectivity.…”

Section: Discussionmentioning

confidence: 99%

Access to Assistive Technology during the COVID-19 Global Pandemic: Voices of Users and Families

Layton

Mont²,

Puli

et al. 2021

IJERPH

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The SARS COVID-19 pandemic emerged in 2019 and has impacted people everywhere. Disparities in impact and outcomes are becoming apparent for individuals and communities which go beyond the trajectory of the disease itself, influenced by the strength and weaknesses of systems of universal health care, and the actions of civil society and government. This article is one of a series exploring COVID-19-related experiences of assistive technology (AT) users across the globe and implications for AT systems strengthening. AT such as mobility products, braille devices, and information communication technologies are key enablers of functioning, necessary to the achievement of the UN Sustainable Development Goals and enshrined in the Convention on the Rights of Persons with Disabilities. Reporting on a survey of 73 AT users across six global regions, we demonstrate that minority groups already living with health inequities are unduly impacted. An AT ecosystem analysis was conducted using the WHO GATE 5P framework, that is, people, products, personnel, provision and policy. AT users and families call for inclusive pandemic responses which encompass their needs across the lifespan, from very young to very old. We offer specific recommendations for future action to strengthen access to AT across public policy and civil society in pandemic preparedness and response.

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Staying connected during COVID-19: Family engagement with adults with developmental disabilities in supported accommodation

Cited by 36 publications

References 27 publications

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

Impact of COVID‐19 on the burden of care of families of people with intellectual and developmental disabilities

Access to Assistive Technology during the COVID-19 Global Pandemic: Voices of Users and Families

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