The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

Abstract

Background: People with an intellectual disability are a vulnerable group during COVID-19 due to multi-morbidity, frailty, underlying conditions/health problems, social circumstances and limitations in understanding. This place them at greater risk of more severe outcomes from COVID-19. Objective: To chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability and their carers reported in the research. Methods: A scoping review method was used to review literature published across eight databases in 2020 and included manual searches of reference lists of included articles. Results: Sixteen studies were selected for inclusion. The findings highlight that professionals, people with intellectual disability and their carers were keen to comply with pandemic related public health guidance. However, implementing infection prevention and control measures in certain contexts for people with intellectual disability was challenging. Thereby a rights-based, person-centred approach to care is essential and professionals need to extend their understanding and practice of collaborative working to include people with intellectual disability and their family/carers. The findings highlight that compliance with public health guidance and infection control measures can be difficult for people with intellectual disability to implement. Conclusions: There is limited good quality robust research on COVID-19 and people with intellectual disability and/or their carers experiences.

Supporting the needs of people with intellectual and developmental disabilities 1 year into the COVID‐19 pandemic: An international, mixed methods study of nurses' perspectives

“…The COVID‐19 pandemic has highlighted the physical, mental, and social vulnerabilities of people with IDD and their carers (Doody & Keenan, 2021 ). 1 Data from the United States and the United Kingdom reveal that people with IDD have faced higher mortality rates from COVID‐19 than their counterparts without disability (FAIR Health, 2020 ; Gleason et al, 2021 ; Spreat et al, 2020 ; Williamson et al, 2021 ).…”

“…1 Data from the United States and the United Kingdom reveal that people with IDD have faced higher mortality rates from COVID‐19 than their counterparts without disability (FAIR Health, 2020 ; Gleason et al, 2021 ; Spreat et al, 2020 ; Williamson et al, 2021 ). People with IDD are at greater risk for serious illness from COVID‐19 due to underlying health conditions, limitations in understanding the disease and risk minimization strategies, and decreased ability to social distance for those living in congregate care settings and/or those who are reliant on a professional carer for their daily needs (Doody & Keenan, 2021 ). High rates of social isolation and loneliness exacerbate existing health disparities for a large proportion of people with IDD (McVilly et al, 2006 ).…”

“We Were Absolutely in the Dark”: Manifest Content Analysis of Developmental Disability Nurses’ Experiences During the Early COVID-19 Pandemic

“…In fact, our search at that time yielded zero research studies related to the impact of COVID-19 on people with DD. While many studies on the impact of COVID-19 on people with DD have since been published (Doody & Keenan, 2021;Kim et al, 2021;Lake et al, 2021;Rosencrans et al, 2021;Totsika et al, 2021), as of July 2021, we have found no other empirical research studies related to the impact of COVID-19 from the lens of the DD nurse. Furthermore, we have found no empirical research studies of DD nurses' experiences during other public health crises, including SARS, H1N1 or other influenza outbreaks, or during major disasters such as Hurricane Katrina.…”

Down Syndrome and Dementia:

“…During the COVID-19 pandemic, those with IDD had higher risk of contracting, and also becoming sick and dying from the virus. 16 The goal of the primary care physician is to recognize and manage the medical and socioeconomic disparity that exists for patients with DS, especially as they age. In the case of patients with DS and dementia, understanding the living situation, who speaks for the individual when they cannot speak for themselves, recognizing the potential for injury and abuse-all while providing quality health care-takes an interprofessional team.…”