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

Figures & data

Table 1. Search terms.

S1	Intellectual disability* OR learning disability* OR developmental disability*
S2	Epidemic OR Pandemic OR COVID OR COVID-19 OR Coronavirus
S3	S1 + S2

Table 2. Inclusion/exclusion criteria.

Include

Exclude

Papers addressing information pertaining to coronavirus. Paper focus is on persons with intellectual disability and/or their carers. 01-01-2020 − 31-12-2020. English language. Primary peer reviewed research papers in journals.

Papers that do not addresses information pertaining to coronavirus. Papers where it is not possible to extract data focussing on persons with intellectual disability and/or their carers. Non-English language paper. Non-primary research such as reports, working papers/protocols, conference abstracts, government and non-governmental organisations documents, opinion papers, letters to the editor, discussion papers, correspondence papers

Figure 1. PRISMA 2009 Flow Diagram

Table 3. Data extraction table.

Author(s), Year, Title, Place	Aim and methodology	Population, methods	Summary of findings	Key messages	Limitations
[20] Mental Health of Parents of Special Needs Children in China during the COVID-19 Pandemic. China	To explore the mental health of parents of children with disabilities during the COVID-19 pandemic. Electronic survey.	1450 participants (parents of children with intellectual disability, autism, or visual/hearing impairment). 703 parents of children with intellectual disability, 454 with autism and 293 with visual/hearing impairment. Tools used – demographics, Behavioural Problems of Children during COVID-19, Psychological Demand of Parents during COVID-19, GHQ-12*, PSS*, PSI-SF-15*, NEO-FFI*. Data gathered - February 2020.	Ranked by mean mental health scores, parents of children with autism spectrum disorder (M = 2.88) were first, followed by an intellectual disability (M = 2.45) and a visual/ hearing impairment (M = 2.24). Mental health of parents of children with an intellectual disability was positively related to behavioural problems in children (p < .001), psychological demand of parents (p < .001), parenting distress (p < .001), parent–child dysfunctional interaction (p < .001), and di cult child (r = 0.26, p < .001); whereas it was negatively related to family support (p < .001), friend support (p < .001), and other necessary support (p < .001).	Behavioural problems of children were the main factors predicting mental health among parents. With quarantine there is limited access to education, rehabilitation, training, or intervention, and treatments services and this may lead to behavioural regression. Psychological demand of parents also predicts mental health among all parents. Parents are continually seeking out special treatment, medical equipment, and other services about how to deal with child’s behaviour, which would increase their psychological burden.	Cronbach’s alpha reported and above 0.7 for scales used. Examines three types of disabilities; thus, the results may not be generalisable. Self-report measures used. Online questionnaire may be limited to those with access and connectivity and literacy issues may affect response rate. Data collected very early in the pandemic and further data required to identify the long-term impact.
[21] Experiences and needs of direct support staff working with people with intellectual disabilities during the COVID-19 pandemic: A thematic analysis. Netherlands	To explore the experiences and needs of direct support staff during the initial stage of the COVID-19 lockdown. Descriptive qualitative study.	Eleven direct support staff from five intellectual disability services. Tools used - recorded weekly messages and thematic analysis. Data gathered – March/May 2020.	Four key areas 1) Emotional impact -The fear of infection, frustration and disappointment, sense of responsibility and overwhelmed with emotions. 2) Cognitive impact – coping, reflection, problem-solving attitude and perseverance 3) Practical impact - impact of preventive measures, experiencing time pressure, a lack of face-to-face, team meetings and increased use of digital consultation 4) Professional impact - cooperation and connectedness between support staff and other professionals.	Implications for policy and practice such as the provision of clear information from healthcare organisations and COVID-19 crisis teams is of paramount in assuaging staff and alleviating fears. It is essential that healthcare organisations emphasise the collective approach and support for direct support staff to overcome the sense of lone responsible and been in it on one’s own.	The small sample size in the study raises the question of whether the current findings can be generalised.
[22] A thematic analysis into the experiences of people with a mild intellectual disability during the COVID-19 lockdown period. Netherlands	To explore the experiences and needs of people with a mild intellectual disability with a (paid) job during the initial stage of the lockdown. A descriptive qualitative study.	6 adults with a mild intellectual disability. Tools used - semi-structured individual interviews and data analysed thematically. Data gathered – March/May 2020.	Increased levels of loneliness and enhanced health anxiety about the pandemic. Due to the preventive measures, the participants were no longer able to go to their work and undertake activities with their family, friends, or colleagues. As a result, there was a loss of structure and daily routine. In addition, there were the added difficulties of understanding and applying the new rules.	Need for more accessible information to be available to people with an intellectual disability such as easy read and accessible websites with up-to-date information about COVID-19. Consideration needs to be given as to how they could be supported to work from home and vitally important given the potential for additional waves.	Small sample size. All participants had a mild intellectual; disability and had voluntary work roles and may not be representative of wider intellectual; disability population.
[23] Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions. United States of America	To capture changes in access to healthcare and educational services for individuals with intellectual and developmental disabilities that occurred shortly after restrictions were initiated. Electronic survey.	818 participants, (669 USA and 149 outside of the USA). Intellectual disability participants 649 (535-80% USA and 114-76.5% outside USA). Tools used - demographics, changes to educational services, changes to healthcare services and resources that caregivers found most helpful. Data gathered – April/May 2020.	Seventy‐four per cent of parents reported that their child lost access to at least one therapy or education service, and 36% of respondents lost access to a healthcare provider. Only 56% reported that their child received at least some continued services through tele‐education. Those that needed to access healthcare providers did so primarily through telemedicine. Telehealth (both tele‐education and telemedicine) were reported as helpful when available, and caregivers most often endorsed a need for an augmentation of these remote delivery services, such as 1:1 videoconference session, as well as increased access to 1:1 aides in the home.	COVID‐19 restrictions have greatly affected access to services for individuals with syndromic intellectual and developmental disabilities. Telehealth may provide opportunities for delivery of care and education in a sustainable way, not only as restrictions endure but also after they have been lifted.	Survey not validated against a clinical gold standard, nor did the researchers use any validated clinical measures or assessments alongside the survey. Online questionnaire may be limited to those with access and connectivity and literacy issues may affect response rate.
[24] Excess mortality in the first COVID pandemic peak: cross-sectional analyses of the impact of age, sex, ethnicity, household size, and long-term conditions in people of known SARS-CoV-2 status in England. United Kingdom	Aim to describe the rate of all-cause mortality throughout the first peak of SARS-CoV-2. Observational cohort study design with a cross-sectional analysis of people with SARS-CoV-2.	4,413,734 records of patients registered on the 11^th of May 2020 and having ≥1 year of health records. 55,951 patients had intellectual disability. Tools used - living in communal dwellings, SARS-CoV-2 exposure, socioeconomic and ethnic inequalities. Data gathered - May 2022.	People intellectual disability had a higher mortality odds, with the exception of diabetes and hypertension.	People with intellectual disability should be included on the list of groups who are more vulnerable to mortality associated with SARS-CoV-2 infection. There is a need for risk reduction strategies to reduce increased risk associated with SARS-CoV-2 for people with intellectual disability.	The use of clinical diagnostic codes (used to define the probable cases) is open to criticism.
[25] COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State. United States of America	To describe COVID-19 outcomes among people with intellectual and developmental disability living in residential groups homes in the state of New. Quantitative descriptive study.	115 residential service providers with 20,431 residents and 19,453,291 general population. Tools used - number of residents, COVID-19 positive cases (confirmed by a physician), COVID-19 deaths, case rate, case fatality and mortality rate. Data gathered – May 2020.	COVID-19 case rates were substantially higher in residential group homes indicating a greater risk for this population group. The case rate was 4.1 times higher for people with IDD than for New York State. Case-fatality and mortality rates were markedly higher for people with IDD than for New York State: 15.0% compared to 7.9% for case-fatality; 7.8 times higher for mortality rates. Mortality rate for COVID-19 was higher for people with IDD residing in congregated settings.	Increased risk from COVID-19 for individuals living in congregate care settings due to the challenges these types of residence present to physical distancing. Need for public health surveillance systems to include disability status as a basic demographic characteristic. Need research to explore the specific impact of COVID-19 on people with intellectual and developmental disability and reduce their disproportionate risk in the current pandemic.	Reply on data provided by a coalition of organisations.
[26] COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs. United States of America	To determine the impact of residential setting and level of skilled nursing care on COVID-19 outcomes for people receiving intellectual and developmental disability services, compared to those not receiving intellectual and developmental disability services. Quantitative descriptive study involving secondary data analysis.	354,640 receiving services 39,157,583 not receiving services. Tools used – California DDS data on COVID-19 outcomes for people with intellectual and developmental disability receiving services (number of deaths, type of service) Data gathered – May/October 2020.	Compared to those not receiving IDD services, those receiving such services had a 60% lower case rate, but 2.8 times higher case-fatality rate of COVID-19. COVID-19 outcomes varied significantly among Californians receiving services by type of residence and skilled nursing care needs: higher rates of diagnosis in settings with larger number of residents, higher case-fatality and mortality rates in settings that provided 24-h skilled nursing care. Diagnosis with COVID-19 among Californians receiving services appears to be related to the number of individuals within the residence, while adverse COVID-19 outcomes were associated with level of skilled nursing care.	When data is available, future research should examine whether these relationships persist even when controlling for age and pre-existing conditions.	The data currently available on COVID-19 outcomes among people with intellectual and developmental disability in the US is scarce. M data is available and efforts to understand and address how the pandemic is affecting this vulnerable population must make use of all available data.
[27] An audit of the well-being of staff working in intellectual disability settings in Ireland during the COVID-19 pandemic. Ireland – authors from the United Kingdom	To establish a baseline of the well-being of staff working in intellectual disability services in Ireland during the COVID-19 pandemic. Electronic survey.	285 staff in the Republic of Ireland. Tools used – demographics, CBI*, PHQ-9*, GAD-7*. Data gathered – May/June 2020.	Staff reported moderate levels of personal and work-related burnout and mild levels of anxiety and depression. Higher mean scores were recorded across scales from staff who worked in independent living settings and from staff who supported individuals with challenging behaviour. Staff working in home care felt the least supported by their employer.	Employers need to consider staff well-being, given the levels of personal and work-related burnout, and anxiety and depression. This is particularly true for staff who work in independent living settings and with adults with challenging behaviour. Future research should focus on proactive strategies for improving staff well-being in the short term, given the current resurgence of COVID-19 in Ireland.	The online self-selecting recruitment process may result in respondents who have higher levels of stress being more motivated to respond. No inferential analysis was undertaken and no pre-COVID-19 measures to compare.
[28] Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities. United States of America	To investigate parental perspectives on the impact of COVID‐19 in a sample of predominantly Hispanic/Latinx, Spanish‐speaking families of young children with developmental delay or ASD living in the USA	77 parents’ preschool‐aged children (3–5 years old) with developmental delay or ASD. COVID‐19 interview (5 questions) via telephone. Data gathered March/May 2020.	The greatest challenge was around difficulties of being home during the pandemic such as being stuck at home and unable to leave the house, balancing work, caring for children and lack of childcare, changes in routine, emotionally supporting family, finding activities and preventing boredom for children. Parents reported financial concerns and dealing with significant challenges related to their child’s developmental services decreasing or stopping and feeling like they could not meet their child’s educational and developmental needs at home. Greatest concern was their family’s health and not getting COVID‐19 and dealing with their child’s behaviour problems. Some benefits reported such as, having more time together as a family, enjoyed a slower pace of life, gained more sleep, able to go outside more and meditate and reflect, communities coming together to support each other, they had learned to be more patient.	Both positive and negative aspects experienced. However, if restrictions continued for an extended period of time the pandemic would have a range of negative impacts on the family. Specifically, concerns about the long‐term impact of the pandemic on employment and finances and child’s emotional health. Families also expressed a variety of other long‐term concerns including lack of educational and developmental progress and emotional concerns for themselves and their child (fear of what the future will look like, feeling constant panic, getting very bored).	Findings present a snapshot of challenges faced by families with children with IDD but are from early in the pandemic and the long‐term impacts of the pandemic need consideration from people with IDD, families and professional’s perspective. Sample was ethnically, linguistically and socioeconomically diverse and caution must be taken in generalising the findings to other populations.
[29] Autism and COVID-19: A Case Series in a Neurodevelopmental Unit. France	Aim to describe the medical and behavioral manifestations of COVID-19 in individuals with autism and challenging behaviour. Retrospective case series.	16 participants with autism and ID. Clinical variables collected retrospectively (psychiatric symptoms prior to COVID-19 and COVID-19 symptoms. Data gathered – March/April 2020.	The main COVID-19 symptoms included upper respiratory infection, diarrhea, fatigue, fever and respiratory signs. One person’s epileptic seizures changed from partial to general.	Both common COVID-19 symptoms and idiosyncratic are manifested. A COVID+ unit for such patients is warranted and requires close collaboration with infectologists to limit both the spread of the virus and the ostracism of patients with autism.	Only 16 cases and 11 were COVID-19 confirmed cases. Took place in a specific unit for patients with autism and this type of support unit may not be available in other acute hospitals.
[30] COVID-19 deaths in people with intellectual disability in the UK and Ireland: descriptive study. United Kingdom	To understand if general population risk factors and comorbidities apply synchronously to the intellectual disability population. An observational descriptive study.	69 COVID-19-related deaths in intellectual disability from learning disability services in England and Ireland. Data gatered – March/June 2020.	The mean age of death (64 years) was younger than the general population and the cohort had high rates of moderate-to-profound intellectual disability (n = 43), epilepsy (n = 29), mental illness (n =29), dysphagia (n = 23), Down syndrome (n = 20) and dementia (n = 15). Considering mental health parameters, 11 had a diagnosis of severe mental illness and 18 having another mental illness. Just over a third had presented with challenging behaviour and a third had Down syndrome. 20 deaths in people with Down syndrome, 6 in people diagnosed with autism and 1 diagnosed with ADHD.	Reports on increased mortality and highlight the importance of exploring specific factors and comorbidities that may put people with intellectual disability at greater risk.	A case series collated through snowballing methodology may not be a representative sample. The use of psychiatrists for data collection may have caused high prevalence figures for mental illness.
[31] Impact of the initial response to COVID-19 on long-term care for people with intellectual disability: an interrupted time series analysis of incident reports. Netherlands.	To identify incident reports changed in a large care organisation from before until the end of the initial response phase. A quasi‐experimental interrupted time series design.	Weekly counts of incident reports, ranged from 6292 client incidents in 2016 to 6301 in 2020. Data gathered - September 2016/June 2020.	While overall the number of incident reports was stable across the years. The slope for the COVID‐19 period was significantly higher than for the pre‐ COVID‐19 period showing an increase in; reported incidents and incidents with aggression. Regression analysis showed a significant drop in medication error reports from pre‐COVID‐19 levels to the start of the COVID‐19 phase.	COVID‐19 measures may have increased compliance with health care protocols within more structured day routines, possibly leading to an actual decrease in medication errors.	Continued monitoring is needed to identify whether the rise in incidents flattened after this initial response phase and when scaling down of pandemic measures occur.
[32] Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. United States of America.	To analyze data from the TriNetX COVID-19 Research Network platform to identify COVID-19 patients.	30,282 patients of which 474 patients with developmental disability. Analysis focussed on trends in comorbidities, number of cases, number of deaths, and case fatality rate among patients who had a positive diagnosis for COVID-19.	The overall case fatality rate was comparable for those with IDD (5.1%) and those without IDD (5.4%). However, they identified much higher rates among adults under 75 year of age with an IDD than those without an IDD i.e. patients aged 18-74 years with an IDD 4.5%, without IDD 2.7%.; ages. They also reported people with an IDD had a higher prevalence of specific comorbidities associated with poorer COVID. These included those with endocrine, nutritional, or metabolic disorders and diseases of the circulatory system.	People with ID have higher prevalence of specific co-morbidities, such as hypertension, heart disease, respiratory disease, and diabetes, which are identified as risk factors for poor outcomes from COVID.	Comparisons between reports are difficult due to differences in governmental responses between countries, and differences in the types of samples.
[33] Impact of COVID-19 related lockdown on psychosocial, cognitive, and functional well-being in adults with Down Syndrome. Italy	To describe the impact of COVID-19 lockdown on psychosocial, cognitive and functional well-being in a sample population of adults with Down Syndrome (DS). Clinical study	46 participants with DS. Tools used - interRAI-ID, CPS*, ADLH*, IADLH*, DRS*, ABS*, SOCWD*, COMM*, PAIN scale and Visual Analog Scale. Data gathered – Pre (2015-March 2020) COVID-19 period April/May 2020.	The number of subjects that have worsened, improved or remained constant was significantly different for the IADLH scale. Regarding the pre-lockdown period, a significant worsening over time was found for the DRS score. Regarding the post-lockdown period, significant worsening in scores over time was found for the SOCWD scale, IADLH scale and DRS, while a significant improvement was found for ABS, ADLH, CPS and COMM scales.	Social isolation measures related to COVID-19 lockdown affect the functional and psychosocial well-being of adults with Down Syndrome. Lockdown should be considered a potentially traumatic life stressor event.	Study sample is small and pre-lockdown evaluations spread out over a large timeframe. Participants attended an outpatient clinic, therefore may have more complex health needs compared to the general DS population.
[34] Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. United Kingdom.	To identify the mental health of informal carers of children and adults with ID during the coronavirus pandemic and contextualise within the extent of their social support and stress/coping strategies. Electronic survey.	244 participants (carers of adults 107 and children 100 with ID and cares of children without ID 37). Tools used – demographics, Ways of Coping Questionnaire, Family Support Scale, GAD-7*, PHQ-9*, PHQ-ADS*, Short Defeat and Entrapment Scale, Objective Stress Scale. Data gathered – April/June 2020.	Support provided − 28% within the home, 64% remotely by phone (30%) or email/text (23%), videoconferencing (11%). Other support (28%) included outdoor conversations, social media and provision of supplies. Contact with professionals, only 3% were within the home with 90% provided remotely, 7% via videoconferencing. All groups made greater use of adaptive (Problem-Solving) coping strategies than maladaptive (Wish Fulfilment) coping strategies. Carers of children with intellectual disability reported significantly greater anxiety, depression, defeat/entrapment and wish fulfilment. Moderate to severe levels of anxiety were reported by 43% of carers of children with intellectual disability compared with 8% in parents of children without. Moderate to severe levels of depression, reported by 45% of carers of children with intellectual disability, compared with 11% of parents of children without. Carers of children with intellectual disability also received significantly less social support than parents of children without. Sources rated most helpful were partners, professionals and children; least helpful were neighbours, social/community groups and religious organisations. Carers of adults with challenging behaviour the least supported group.	The high scores of carers of children and adults with intellectual disability on these measures highlights that there should be a concern for their mental health and overall well-being. It is the overall burden of carer stress that impacts on carers’ mental health. Carer burden impairs mental health independently of the level of social support. Carers of people with intellectual disability, particularly those with challenging behaviour, reported that they received less support despite their greater needs.	Reliability of tools not reported. Comparison for the children group small 37 and no comparison group for the adult group.
[35] The use of online support by people with intellectual disabilities living independently during COVID-19. Netherlands.	To provide an insight into the use of online support during COVID-19. A retrospective, descriptive research design.	648 service users with intellectual disability had at least one contact with DigiContact support staff. Data gathered - first 20 weeks of 2019 / first 20 weeks of 2020.	The service dealt with a higher number of contacts per day during COVID‐19. The number of unplanned contacts per day per service user was significantly higher during COVID‐19 than during the first 11 weeks of 2020. COVID‐19 outbreak and related restrictive measures had quite an impact on the use of online support.	The sudden, substantial and temporary increase in unplanned online support indicates that people were considerably worried and experienced a high level of anxiety especially during the first weeks of the crisis. A lack of accessible information on the virus and the containment measures may contribute to the increase in unplanned online support use.	The study focussed on the first weeks of the COVID‐19 pandemic only. Would be useful to include data on the use of other online and onsite supports used.

Tools* - Activities of Daily Living Hierarchy (ADLH), Aggressive Behaviour scale (ABS), Cognitive Performance Scale (CPS), Communication Scale (COMM), Copenhagen Burnout Inventory (CBI), Depression Rating Scale (DRS), General Anxiety Disorder-7 (GAD-7), General Health Questionnaire-12 (GHQ-12), Instrumental Activities of Daily Living Hierarchy (IADLH), Neuroticism Extraversion Openness Five Factor Inventory (NEO-FFI), Patient Health Questionnaire (PHQ-9), Patient Health Questionnaire Anxiety and Depression Scale (PHQ-ADS), Parenting Stress Index-Short Form 15 (PSI-SF-15), Perceived Social Support (PSS), Social Withdrawal Scale (SOCWD).

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Data availability statement

No data are available other than that reported in this review and available in original published papers used in this review.