Preventing, mitigating, and managing future pandemics for people with an intellectual and developmental disability ‐ Learnings from <scp>COVID</scp>‐19: A scoping review

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.

Section: Introductionmentioning

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

“…In the United Kingdom, a reduction of services was permitted if an individual became critically ill with COVID‐19 (Frankova, 2020 ). Media coverage has also had discriminatory undertones conveying that people with ID might not have been considered for palliative care during the pandemic (Paulauskaite et al, 2021 ; Taggart et al, 2022 ).…”

Section: Data Set 1—exploration Of Relevant Research Literaturementioning

confidence: 99%

Key learnings from COVID‐19 to sustain quality of life for families of individuals with IDD

Wanjagua

Hepburn

Faragher

et al. 2022

COVID‐19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world’s children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID‐19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics.

“…Pervasive negative attitudes regarding disabilities and discrimination Taggart et al (2022)'s scoping review found that there has been a "global failure across many HIC and low-tomiddle income countries in protecting the human rights of people with an IDD during the COVID-19 pandemic." Such rights follow from the inherent dignity and worth of all human beings.…”

Section: Health Inequitiesmentioning

confidence: 99%

“…Recent scoping reviews (Doody & Keenan, 2021 ; Taggart et al, 2022 ) have synthesized research on the impact of the COVID‐19 pandemic on the health and overall well‐being of people with IDD and their caregivers. Much of this impact has been negative and shown to be disproportionate relative to the general population.…”

Section: Introductionmentioning

confidence: 99%

“…Taggart et al ( 2022 )'s scoping review found that there has been a “global failure across many HIC and low‐to‐middle income countries in protecting the human rights of people with an IDD during the COVID‐19 pandemic.” Such rights follow from the inherent dignity and worth of all human beings. Inherent human dignity is recognized as the ethical foundation of the UN ( 2006 )'s Convention on the Rights of Persons with Disabilities , which is binding on the 182 states to date that have ratified it.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

Sullivan

Björne

Heng

et al. 2022

A growing body of knowledge highlights the negative impact of the COVID‐19 pandemic on the health and well‐being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public‐health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well‐being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well‐being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.