The COVID-19 pandemic should be last orders for poor care of people with neurodevelopmental disorders

Strydom, André; Corcoran, Elizabeth; Rebillat, Anne Sophie

doi:10.1192/bjp.2021.22

Cited by 7 publications

(12 citation statements)

References 3 publications

(4 reference statements)

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“…For many countries, statutory health organisations have been legally required to provide written information on the public‐health prevention and protection measures. The importance of having accessible information that clearly explains the respective public‐health prevention and protection measures in a format that people with an IDD can understand has been highlighted throughout the literature (Alexander et al, 2021; Flynn et al, 2021; LeDeR, 2020; Majnemer et al, 2021; Strydom et al, 2021; Tromans et al, 2021; UN, 2020) (see Table 2). The papers reviewed, identified important sources of pandemic‐related information including leaflets, television, radio, and social media.…”

Section: Resultsmentioning

confidence: 99%

“…Sub-theme 1.3: Use of personal protective equipment Guidance regarding the wearing of face masks, aprons, and gloves (PPE) have been issued for all countries, for carers working in a range of community health and social care organisations, and for hospitals/institutions and prisons (Dickson et al, 2020;NHS England, 2020aStrydom et al, 2021;UN, 2020;WHO, 2020). This includes facility sanitisation, social distance measures, frequent handwashing and disposal of tissues when used.…”

Section: Sub-theme 12: Handwashing and Social Distancingmentioning

confidence: 99%

“…Sub-theme 1.4: Shielding Government recommendations have emphasised that vulnerable high-risk populations, including people with an IDD, should engage in social distancing measures thereby avoiding public areas, public transport, and from those individuals who are displaying symptoms/have a diagnosis of COVID-19 (NHS England, 2020aStrydom et al, 2021;UN, 2020;WHO, 2020). Such recommendations also stated "shield" and stay at home.…”

Section: Sub-theme 12: Handwashing and Social Distancingmentioning

confidence: 99%

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

Taggart¹,

Mulhall²,

Kelly³

et al. 2022

Policy Practice Intel Disabi

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Many people with an intellectual and developmental disability (IDD) are biologically, socially, and economically/politically vulnerable to developing SARS‐COV‐2 (COVID‐19) compared to the general population. Most governments have developed public‐health policies and strategies to address the challenges that COVID‐19 has presented. These policies and strategies have been based upon the general population and in fact could be detrimental to the health and well‐being of people with IDD. This paper provides a review of the key learning points emerging from the COVID‐19 literature, together with guidance for the provision of services and government interventions for people with an IDD for future pandemics. Using guidance from the Joanna Briggs Institute, a scoping review was used to explore the current literature (scientific and grey) on IDD and COVID‐19. Three core themes emerged from the review. Prevention/protection: User‐friendly accurate accessible information, handwashing and social distancing, Personal Protective Equipment, shielding, track and trace, testing, vaccine compliance/hesitancy, and training. Mitigation: Making reasonable adjustments both to where people live, and to community healthcare/clinical practice; and the use of technology as a pandemic‐response strategy. Treatment/Management: Access to acute hospitals and lifesaving equipment, using a suitable clinical fatality assessment instrument, stopping Do Not Resuscitate notices, individualised care plans and hospital passports, family/paid carers to support people in hospitals; and use of telehealth in clinical care. This is the first international scoping review that provides a narrative synthesis of emerging themes related to the COVID‐19 pandemic and people with an IDD. This paper highlights themes related to preventing, mitigating, and treating/managing the care of this population during the COVID‐19 pandemic, which can inform future public‐health policies. This paper also exposes the negative impacts of public‐health interventions in both High‐Income Countries and Low‐Middle Income Countries for this population including lapses in upholding human rights. These data provide a basis for learning from the COVID‐19 pandemic in planning for future pandemics.

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Section: Resultsmentioning

confidence: 99%

Section: Sub-theme 12: Handwashing and Social Distancingmentioning

confidence: 99%

Section: Sub-theme 12: Handwashing and Social Distancingmentioning

confidence: 99%

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

Taggart¹,

Mulhall²,

Kelly³

et al. 2022

Policy Practice Intel Disabi

View full text Add to dashboard Cite

show abstract

“…As proportions of mental health-related ED visits and hospitalisations remained notably higher for adults with IDD compared with other adults during the COVID-19 pandemic, it is important to consider how the changes in ED and inpatient service delivery in response to public health restrictions may impact people with IDD specifically. For example, requirements that all staff and patients wear masks, restrictions related to visitors or support people and a greater reliance on technology may have disproportionately negative impacts on people with IDD while in hospital, given their functional and communicative challenges (Alexander et al 2020;NHS England 2021;Strydom et al 2021). This is especially relevant to the mental well-being of individuals who seek emergency and hospital care for mental health issues.…”

Section: Discussionmentioning

confidence: 99%

Changes in community and hospital‐based health care use during the COVID‐19 pandemic for adults with and without intellectual and developmental disabilities

Durbin

Balogh

Lin

et al. 2022

J intellect Disabil Res

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Background Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery during the COVID‐19 pandemic may impact people with IDD differently than others. For community and hospital‐based services, this study describes the proportion of adults with and without IDD who used health care in the year pre‐COVID‐19 and the first year of the pandemic. Methods This retrospective cohort study used linked health administrative databases to identify adults aged 18–105 years with and without IDD using unique encoded identifiers. Counts and proportions of adults who used health care services were reported for the pre‐COVID‐19 year (16 March 2019 to 14 March 2020) and the first COVID‐19 year (15 March 2020 to 15 March 2021). Results Across services, the proportion of adults who used services was lower during the first COVID‐19 year compared with the year prior, except for virtual physician visits that increased markedly for people with and without IDD. While the proportion of adults who used services was higher for those with IDD compared with those without IDD for both years, differences were greatest for mental health emergency visits and hospitalisations; adults with IDD were 6.3 to 10.9 times more likely to use these services than others with no IDD during the pandemic. Conclusions During the first COVID‐19 year in Ontario, Canada, service use decreased for all service types, except for virtual physician visits. In both years, adults with IDD remained more likely to use services than other adults, with the largest differences in use of mental health hospitalisations and mental health emergency department visits.

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“…Many individuals with DS, and particularly older adults, may be at higher risk for infection due to increased exposure through living in care settings and through contact with rotating care teams. 8 …”

Section: Introductionmentioning

confidence: 99%

Susceptibility to COVID-19 Diagnosis in People with Down Syndrome Compared to the General Population: Matched-Cohort Study Using Primary Care Electronic Records in the UK

et al. 2022

Self Cite

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Background During the COVID-19 pandemic, people with Down syndrome (DS) have experienced a more severe disease course and higher mortality rates than the general population. It is not yet known whether people with DS are more susceptible to being diagnosed with COVID-19. Objective To explore whether DS is associated with increased susceptibility to COVID-19. Design Matched-cohort study design using anonymised primary care electronic health records from the May 2021 release of Clinical Practice Research Datalink (CPRD) Aurum. Setting Electronic health records from approximately 1400 general practices (GPs) in England. Participants 8854 people with DS and 34,724 controls matched for age, gender and GP who were registered on or after the 29th January 2020. Measurements The primary outcome was COVID-19 diagnosis between January 2020 and May 2021. Conditional logistic regression models were fitted to estimate associations between DS and COVID-19 diagnosis, adjusting for comorbidities. Results Compared to controls, people with DS were more likely to be diagnosed with COVID-19 (7.4% vs 5.6%, p ≤ 0.001, odds ratio (OR) = 1.35; 95% CI = 1.23–1.48). There was a significant interaction between people with DS and a chronic respiratory disease diagnosis excluding asthma and increased odds of a COVID-19 diagnosis (OR = 1.71; 95% CI = 1.20–2.43), whilst adjusting for a number of comorbidities. Conclusion Individuals with DS are at increased risk for contracting COVID-19. Those with underlying lung conditions are particularly vulnerable during viral pandemics and should be prioritised for vaccinations.

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The COVID-19 pandemic should be last orders for poor care of people with neurodevelopmental disorders

Abstract: Summary We explore whether the needs of individuals with neurodevelopment disorders have been overlooked during the coronavirus disease 2019 (COVID-19) pandemic and set out the issues that need to be considered in response to future health crises and pandemics.

Cited by 7 publications

References 3 publications

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

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

Changes in community and hospital‐based health care use during the COVID‐19 pandemic for adults with and without intellectual and developmental disabilities

Susceptibility to COVID-19 Diagnosis in People with Down Syndrome Compared to the General Population: Matched-Cohort Study Using Primary Care Electronic Records in the UK

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