Sense of Coherence, mental health, and hair cortisol concentrations among older people during the COVID -19 pandemic: a cross-sectional study (preprint)

Background A person’s sense of coherence (SoC) is likely to affect coping when exposed to a life changing event like the COVID − 19 pandemic, which impacted the older population especially hard, an age group that already suffers from a lot of mental illness. Thus, the aim of this study is to investigate the associations between SoC and mental health in older adults using both screening scales and hair cortisol concentrations (HCC).Method A cross-sectional design studying a cohort of 70–80 years old, N = 260, set in Swedish primary care during the pandemic years 2021–2022. Instruments used are sense of coherence 13 (SoC-13), EQ-5D-3L, Geriatric depression scale 20 (GDS-20), Hospital anxiety and depression scale (HADS), and Perceived stress scale 10 (PSS-10). Sociodemography and factors concerning SoC, and mental health are explored. HCC are measured using radioimmunoassay. Outcome measures are factors independently associated to SoC. Linear regression models were performed with SoC as dependent variable, and priory path analyses explored whether associations with SoC were direct, or indirect via anxiety.Results SoC was significantly associated to anxiety (p < 0.001), perceived economic status (p = 0.003), belief in the future (p = 0.001), and perceived negative mental effect from the COVID − 19 pandemic (p = 0.002). The latter was 95% indirectly associated with SoC, and perceived economic status together with belief in the future was 82% directly associated with SoC. HCC and sex were not significantly associated to SoC, but women had somewhat higher HCC than men, though not significantly, and women reported significantly lower quality of life (p = 0.03), and more symptoms of anxiety (p = 0.001) and depression (p < 0.001).Conclusion Anxiety, belief in the future, perceived negative effect on mental health due to the pandemic, and perceived economic status were significantly associated with SoC. Anxiety is suggested to be important in explaining the association between perceived negative mental effect from the COVID-19 pandemic and SoC. Women reported significantly poorer mental health and life quality than men.

Mental illness and COVID-19 vaccination: a multinational investigation of observational & register-based data (preprint)

Background: Individuals with mental illness are at higher risk of severe COVID-19 outcomes. However, previous studies on the uptake of COVID-19 vaccination in this population have reported conflicting results. Therefore, we aimed to investigate the association between mental illness and COVID-19 vaccination uptake, using data from five countries. Methods: Data from seven cohort studies (N=325,298), and the Swedish registers (8,080,234), were used to identify mental illness and COVID-19 vaccination uptake. Multivariable modified Poisson regression models were conducted to calculate the prevalence ratio (PR) and 95% CIs of vaccination uptake among individuals with v.s. without mental illness. Results from the cohort studies were pooled using random effects meta-analyses. Findings: Most of the meta-analyses performed using the COVIDMENT study population showed no significant association between mental illness and vaccination uptake. In the Swedish register study population, we observed a very small reduction in the uptake of both the first (prevalence ratio [PR]: 0.98, 95% CI: 0.98-0.99, p<0.001) and second dose among individuals with mental illness; the reduction was however greater among those not using pyschiatric medication (PR: 0.91, 95% CI: 0.91-0.91, p<0.001). Conclusions: The high uptake of COVID-19 vaccination observed among individuals with most types of mental illness highlights the comprehensiveness of the vaccination campaign , however lower levels of vaccination uptake among subgroups of individuals with unmedicated mental illness warrants attention in future vaccination campaigns.

Mental illness and COVID-19 vaccination: a multinational investigation of observational & register-based data (preprint)

Background: Individuals with mental illness are at higher risk of severe COVID-19 outcomes. However, previous studies on the uptake of COVID-19 vaccination in this population have reported conflicting results. Therefore, we aimed to investigate the association between mental illness and COVID-19 vaccination uptake, using data from five countries. Methods: Data from seven cohort studies (N=325,298), and the Swedish registers (8,080,234), were used to identify mental illness and COVID-19 vaccination uptake. Multivariable modified Poisson regression models were conducted to calculate the prevalence ratio (PR) and 95% CIs of vaccination uptake among individuals with v.s. without mental illness. Results from the cohort studies were pooled using random effects meta-analyses. Findings: Most of the meta-analyses performed using the COVIDMENT study population showed no significant association between mental illness and vaccination uptake. In the Swedish register study population, we observed a very small reduction in the uptake of both the first (prevalence ratio [PR]: 0.98, 95% CI: 0.98-0.99, p<0.001) and second dose among individuals with mental illness; the reduction was however greater among those not using pyschiatric medication (PR: 0.91, 95% CI: 0.91-0.91, p<0.001). Conclusions: The high uptake of COVID-19 vaccination observed among individuals with most types of mental illness highlights the comprehensiveness of the vaccination campaign , however lower levels of vaccination uptake among subgroups of individuals with unmedicated mental illness warrants attention in future vaccination campaigns.

Gender Differences in Mental Health among Returned Cambodian Migrant Workers During the COVID-19 Pandemic (preprint)

The unexpected deportation of many Cambodian migrant workers to their home regions was precipitated by the COVID-19 outbreak's public health concern. A significant number of Cambodians working abroad or in Cambodian cities return to their home provinces, experience stress and despondency and lose faith. However, little is known about these migrant worker’s living and working conditions, health-related quality of life and occupational mental health. This study identifies factors that influence the mental health of Cambodian migrant workers from various countries. Cross-sectional research was to interview 388 returned Cambodian migrant workers in four provinces. This study using mixed quantitative and qualitative research methods in September 2022. The Patient Health Questionnaire 4 (PHQ-4) was applied to assess depression and anxiety among returned Cambodian migrant workers. Most of the participants were female, and the prevalence of depression has increased for both genders. The logistic regression model was used to examine the associations of the several risk factors and mental health. The confounding effect of socio-economic status (gender, age, income, level of education, marital status, and place of residence) was shown to be associated with the mental health. The probability of mental disease factors (nervousness/ anxious or on the edge, not being able to stop or control worrying, little interest or pleasure in doing thing, and feeling down, depression or hopeless) increased with gender and level of education whereas the probability of inability to control and lack of interest increased with income, regardless of gender. The study concludes that returned migrant workers in Cambodia had high rates of occupational stress.

Psychosomatic health complaints among children and adolescents during the COVID-19 pandemic – Results of the longitudinal German COPSY study (preprint)

Background The period throughout the coronavirus disease 2019 (COVID-19) pandemic presented major challenges for children’s and adolescents’ wellbeing and psychosocial adjustment and had a great impact on their mental health. Psychosomatic health complaints are highly common in childhood and adolescence and present an important indicator of mental health and wellbeing.Methods The nationwide, longitudinal COPSY-study (COvid-19 and PSYchological Health) has monitored changes in mental health among children and adolescents in Germany since the beginning of the COVID-19 pandemic in five survey waves (2020–2022). In total, n = 1673 children and adolescents aged 11 years and older and their parents participated in at least one survey wave. Self-reported psychosomatic health complaints were assessed in each survey wave, using a modified version of an internationally validated eight-item symptom checklist (HBSC-SCL). A mixed model panel regression analysis was conducted to examine longitudinal changes in psychosomatic health complaints and to identify psychosocial and pandemic-related risk factors as well as resources. Risk estimations were used to explore the effect of a reported previous infection with COVID-19 on psychosomatic health complaints.Results Psychosomatic health complaints among children and adolescents increased over the course of the COVID-19 pandemic. Girls and children of mentally ill or highly burdened parents were at particular risk. A higher subjective perceived burden of the pandemic as well as COVID-19 related worries were significantly associated with a higher level of psychosomatic health complaints. Overall, Long-COVID was diagnosed by a clinical expert in 2.9% of children with previously reported COVID-19. An infection with COVID-19 was no significant risk factor for psychosomatic health complaints in general but increased the risk of sleeping difficulties and loss of concentration in autumn 2022. Personal resources, a positive family climate, and more perceived social support were significantly associated with less psychosomatic health complaints.Conclusions Three years after the start of the COVID-19 pandemic, children and adolescents are suffering from multiple psychosomatic health complaints. Medium and long-term consequences of the pandemic and associated measures are therefore suspected. Targeted health promotion and intervention strategies are needed to protect and maintain children’s and adolescents’ health.

Impact of COVID-19 on mental illness in vaccinated and unvaccinated people: a population-based cohort study in OpenSAFELY (preprint)

Background: COVID-19 is associated with subsequent mental illness in both hospital- and population-based studies. Evidence regarding effects of COVID-19 vaccination on mental health consequences of COVID-19 is limited. Methods: With the approval of NHS England, we used linked electronic health records (OpenSAFELY-TPP) to conduct analyses in a 'pre-vaccination' cohort (17,619,987 people) followed during the wild-type/Alpha variant eras (January 2020-June 2021), and 'vaccinated' and 'unvaccinated' cohorts (13,716,225 and 3,130,581 people respectively) during the Delta variant era (June-December 2021). We estimated adjusted hazard ratios (aHRs) comparing the incidence of mental illness after diagnosis of COVID-19 with the incidence before or without COVID-19. Outcomes: We considered eight outcomes: depression, serious mental illness, general anxiety, post-traumatic stress disorder, eating disorders, addiction, self-harm, and suicide. Incidence of most outcomes was elevated during weeks 1-4 after COVID-19 diagnosis, compared with before or without COVID-19, in each cohort. Vaccination mitigated the adverse effects of COVID-19 on mental health: aHRs (95% CIs) for depression and for serious mental illness during weeks 1-4 after COVID-19 were 1.93 (1.88-1.98) and 1.42 (1.24-1.61) respectively in the pre-vaccination cohort and 1.79 (1.68-1.91) and 2.21 (1.99-2.45) respectively in the unvaccinated cohort, compared with 1.16 (1.12-1.20) and 0.91 (0.84-0.98) respectively in the vaccinated cohort. Elevation in incidence was higher, and persisted for longer, after hospitalised than non-hospitalised COVID-19. Interpretation: Incidence of mental illness is elevated for up to a year following severe COVID-19 in unvaccinated people. Vaccination mitigates the adverse effect of COVID-19 on mental health. Funding: Medical Research Council (MC_PC_20059) and NIHR (COV-LT-0009).

Enhancing social inclusion through the implementation of evidence-based digital health interventions for mental health and alcohol other drug use problems in the wake of COVID-19: A study protocol (preprint)

At any one time, over 900 million people globally experience a mental disorder (including alcohol/other drug use disorders, Whiteford et al., 2013), and this is increasing by about 3% each year (ABS, 2018). Adding to these challenges, the COVID-19 pandemic presents clear risks for a substantial decline in global mental health. Preliminary evidence points towards an overall rise in symptoms of anxiety and coping responses to stress (Holmes et al., 2020), including increased drug and alcohol use amongst the general population. The greatest mental health impacts of the COVID-19 pandemic will be felt, however, by those who are already most marginalised and people with pre-existing mental health and substance use disorders, who have a higher susceptibility to stress than the general population (Yao et al., 2020). eCliPSE is an online clinical portal developed by CI Professor Frances Kay-Lambkin in partnership with the research team and the NSW Ministry of Health to facilitate access to evidence-based ehealth treatments for mental health and alcohol/other drug [AOD] use problems. However, since the testing of eCliPSE in 2017, uptake of this tool via clinician referral has been low, and no clear models existed for digital treatment integration into health services (Batterham et al., 2015). There are very few examples in the available literature of successful implementation of digital interventions in clinical services, and many failures (Mohr et al., 2017). In response to this, our team has developed an evidence-informed Integrated Translation and Engagement Model (ITEM) to drive the uptake of digital therapeutics into mental health and alcohol/other drug services across NSW. Based on the latest evidence for effective implementation, a consideration of individual, social, environmental, and structural factors, the ITEM synthesises diverse theoretical approaches into a coherent, integrated model. The pandemic has highlighted (and exacerbated) social inequities in relation to the prevalence of mental illness, as well as treatment options. Technology has the potential to respond to this challenge, but Australia lags behind the rest of the world in implementing sustainable, effective digital tools into health service delivery. Additionally, no tool currently exists for the evaluation of dual diagnosis capability of digital programs.

Ventilation during COVID-19 in a school for students with intellectual and developmental disabilities (IDD). (preprint)

Background: This study examined the correlation of classroom ventilation (air exchanges per hour (ACH)) and exposure to CO2 [≥]1,000 ppm with the incidence of SARS-CoV-2 over a 20-month period in a specialized school for students with intellectual and developmental disabilities (IDD). These students were at a higher risk of respiratory infection from SARS-CoV-2 due to challenges in tolerating mitigation measures (e.g. masking). One in-school measure that is suspected to help mitigate the risk of SARS-CoV-2 infection in schools is classroom ventilation. Methods: We established a community engaged research partnership between the University of Rochester and the Mary Cariola Center school for students with IDD. Ambient CO2 levels were measured in 100 rooms in the school, and air changes per hour (ACH) were calculated. The number of SARS-CoV-2 cases for each room was collected over 20 months. Results: 97% of rooms had an estimated ACH [≤]4.0, with 7% having CO2 levels [≥]1,000 PPM for up to 3 hours per school day. A statistically significant correlation was found between the time that a room had CO2 levels [≥]1,000 PPM and per-room SARS-CoV-2 PCR confirmed cases, accounting for 21% of the variance. No statistically significant correlation was found for room ACH and per-room SARS-CoV-2 cases. These findings led to ongoing efforts to upgrade the ventilation systems in this community engaged research project. Conclusions: There was a statistically significant correlation between the total time of room CO2 levels [≥]1,000 PPM during the school day and SARS-CoV-2 cases in that room in an IDD school. This research partnership identified areas for improving in-school ventilation.

Intestinal Microbiome and Maternal Mental Health: Preventing Parenting Stress and Enhancing Resilience in Mothers (preprint)

The number of mothers suffering from mental illness is increasing steadily, particularly under conditions of the coronavirus disease pandemic. The identification of factors that contribute to resilience in mothers is urgently needed to decrease the risks of poor physical and psychological functioning. We focused on the risk of parenting stress and psychological resilience in nonclinical mothers and conducted two studies to examine the relationships between intestinal microbiota, physical condition, and psychological state. Our results showed that alpha diversity and beta diversity of the microbiome are related to high parenting stress risk. Psychological resilience and physical conditions were associated with relative abundances of the genera Blautia, Clostridium, and Eggerthella. This study helps further understand the gut–brain axis mechanisms and supports proposals for enhancing resilience in mothers.

Perception of mental health services during the COVID-19 pandemic – a German service user survey (preprint)

Purpose COVID-19 and the resulting restrictions in daily living had society-wide impact on mental health, especially for people with mental disorders. So far, there is little evidence on how the pandemic impacted mental health care provision and perceived access to mental health care.Methods We present self-reported data on mental health and mental health service use comparing pre- and peri-pandemic conditions. Data was taken from an online survey promoted via leaflet and mailing lists with n = 189 individuals who at the time of the survey or before used mental health services. Responses were obtained between mid-July 2021 and mid-June 2022.Results Respondents were on average 34 years old, 83% were women, and the majority were university students. 38% of respondents regarded their mental illness as severe or very severe. Mental distress increased during the pandemic but returned to baseline after the end of the lockdown measures. One third (32%) of participants said that they delayed (26%) or avoided (6%) mental health treatment; 60% responded that access was restricted due to pandemic-related regulations.Conclusion People with mental disorders suffered from decreased mental health during the pandemic. At the same time, they perceived restrictions in mental health care provision and tended to delay mental health treatment due to the COVID-19-related restrictions. This may result in a higher burden of disease following the pandemic.Trial registration The study that this research is a part of is registered with ClinicalTrials.gov: NCT04336527, April 7, 2020, updated May 31, 2023, https://clinicaltrials.gov/ct2/show/NCT04336527.

Definition and clinical variability of SHANK3-related Phelan-McDermid syndrome.

Phelan-McDermid syndrome (PMS) is an infrequently described syndrome that presents with a disturbed development, neurological and psychiatric characteristics, and sometimes other comorbidities. As part of the development of European medical guidelines we studied the definition, phenotype, genotype-phenotype characteristics, and natural history of the syndrome. The number of confirmed diagnoses of PMS in different European countries was also assessed and it could be concluded that PMS is underdiagnosed. The incidence of PMS in European countries is estimated to be at least 1 in 30,000. Next generation sequencing, including analysis of copy number variations, as first tier in diagnostics of individuals with intellectual disability will likely yield a larger number of individuals with PMS than presently known. A definition of PMS by its phenotype is at the present not possible, and therefore PMS-SHANK3 related is defined by the presence of SHANK3 haploinsufficiency, either by a deletion involving region 22q13.2-33 or a pathogenic/likely pathogenic variant in SHANK3. In summarizing the phenotype, we subdivided it into that of individuals with a 22q13 deletion and that of those with a pathogenic/likely pathogenic SHANK3 variant. The phenotype of individuals with PMS is variable, depending in part on the deletion size or whether only a variant of SHANK3 is present. The core phenotype in the domains development, neurology, and senses are similar in those with deletions and SHANK3 variants, but individuals with a SHANK3 variant more often are reported to have behavioural disorders and less often urogenital malformations and lymphedema. The behavioural disorders may, however, be a less outstanding feature in individuals with deletions accompanied by more severe intellectual disability. Data available on the natural history are limited. Results of clinical trials using IGF-1, intranasal insulin, and oxytocin are available, other trials are in progress. The present guidelines for PMS aim at offering tools to caregivers and families to provide optimal care to individuals with PMS.

Cerebrovascular Disease in COVID-19 (preprint)

Not in the history of transmissible illnesses has there been an infection as strongly associated with acute cerebrovascular disease as the novel human coronavirus, SARS-CoV-2. While the risk of stroke has known associations with other viral infections, such as influenza and human immunodeficiency virus, the risk of ischemic and hemorrhagic stroke related to SARS-CoV-2 is unprecedented. Furthermore, the coronavirus disease 2019 (COVID-19) pandemic has so profoundly impacted psychosocial behaviors and modern medical care that we have witnessed shifts in epidemiology and have adapted our treatment practices to reduce transmission, address delayed diagnoses, and mitigate gaps in health care. In this narrative review, we summarize the history and impact of the COVID-19 pandemic on cerebrovascular disease, and lessons learned regarding the management of patients as we endure this period of human history.

The Direct Support Workforce: An Examination of Direct Support Professionals and Frontline Supervisors During COVID-19.

Direct support professionals (DSPs) and frontline supervisors (FLSs) have critical roles in home and community-based services for people with intellectual and developmental disabilities. Low wages and high levels of responsibility created a long-term crisis in recruitment and retention and are exacerbated by the COVID-19 pandemic. A national sample of DSPs and FLSs were compared on demographics and work-related circumstances using data from the third Direct Support Workforce COVID-19 Survey. Significant differences were found in demographics, hours worked, wages, wage augmentations, and quality of work-life. Policy recommendations to address the worsening workforce crisis are provided.

Promoting Resilience in Direct Support Professionals of Adults With Intellectual and Developmental Disabilities: A Qualitative Descriptive Study.

The direct support professional (DSP) workforce shortage crisis has reached untenable levels during the COVID-19 pandemic as DSPs rapidly exit the workforce. To gain a better understanding of factors that contribute to DSP resilience during stressful and challenging times, we interviewed 10 DSPs identified by colleagues as resilient to elicit strategies to promote DSP resilience. Our content analysis revealed nine distinct strategies: (a) communication; (b) self-worth and recognition; (c) authentic, equitable relationships; (d) embracing change and learning; (e) establishing and maintaining boundaries; (f) cultivating an intentional mindset; (g) self-care; (h) spirituality/"the bigger picture"; and (i) a daily practice of humor and fun.

Mental Mental health and risk of mortality and hospitalization in COVID-19 patients. Results from the PRECOVID Study in Spain (preprint)

The COVID-19 pandemic has created unprecedented challenges for health care systems globally. The identification of risk factors is crucial when optimizing medical resources for specific vulnerable population groups such as patients with mental disorders, who are specially at risk of poor COVID-19 outcomes. In this retrospective cohort study including 144,957 individuals with confirmed COVID-19 from the PRECOVID Study (Aragon, Spain), anxiety was the most frequent diagnosis. However, some differences were observed by sex: substance abuse, personality disorders and schizophrenia were more frequently diagnosed in men, while eating disorders, depression and mood, anxiety and cognitive disorders were more common among women. The presence of mental illness, specifically schizophrenia spectrum and cognitive disorders in men, and depression and mood disorders, substance abuse, anxiety and cognitive and personality disorders in women, increased the risk of mortality or hospitalization after COVID-19, in addition to other well-known risk factors such as age, morbidity and treatment burden. Identifying vulnerable patient profiles at risk of serious outcomes after COVID-19 based on their mental health status will be crucial to improve their access to the healthcare system and implement targeted public health prevention measures.

Medical outcomes of children with neurodevelopmental disorders after SARS-CoV-2 vaccination: A six-month follow-up study.

INTRODUCTION: The BNT162b2 (Pfizer-BioNTech) and mRNA-1273 (Moderna) vaccines have been approved for children and adolescents for protecting against SARS-CoV-2 infection. This longitudinal study aimed to compare adverse outcomes after SARS-CoV-2 vaccination in children with neurodevelopmental disorders (ND) (e.g., attention-deficit/hyperactivity disorder [ADHD], autism spectrum disorder [ASD], communication disorders, intellectual disability, and tic disorders) and healthy control children. METHODS: A total of 1335 children who received the SARS-CoV-2 vaccination (762 children with ND and 573 healthy controls) were recruited. All subjects were followed-up for 180 days, and outcome events were defined as outpatient department (OPD) or emergency department (ER) visits during follow-up. Multivariate Cox proportional hazards regression models were used to identify the potential differences in outcomes between the propensity score-matched ND group (n = 311) and the control group (n = 311), and to explore the factors associated with outcomes among all children with ND (n = 762). RESULTS: Compared with the control group, children with ND exhibited a higher likelihood of subsequent OPD or ER visits and paediatric neurology OPD visits after the first dose of vaccination. However, we found that only a small proportion of the children visited the OPD or ER because of adverse vaccination-related effects. Among all children with ND, those with communication disorders showed a higher likelihood of any OPD or ER visit. Paediatric neurology OPD visits were associated with communication disorders, intellectual disability, and methylphenidate and aripiprazole prescriptions. ADHD and ASD were not associated with adverse outcomes. CONCLUSIONS: No specific ND diagnosis or medication use clearly increased the risk of adverse effects of SARS-CoV-2 vaccination. Children with ND can be reassured that the SARS-CoV-2 vaccination is a safe regimen to protect themselves.

Parental stress and support perception in southern Italy's households with intellectual disabilities and/or autistic spectrum disorder before and during the COVID-19 pandemic.

The stress experienced by parents of persons with Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) is higher than that of parents of neurotypical children (TD). An important protective factor is the perception of the support received within the family and the social network. The emergency of the COVID-19 pandemic had a negative impact on the health of people with ASD/ID and their families. The aim of the study was to describe the levels of parental stress and anxiety before and during the lockdown in southern Italy's families with ASD/ID persons and analyze how the levels of support perceived by these families. 106 parents, the ages of 23 and 74 years (M = 45; SD = 9), from southern Italy responded to an online battery of questionnaires measuring parental stress, anxiety, perception of support and attendance at school activities and rehabilitation centers, before and during lockdown. In addition, descriptive, Chi-Square, MANOVA, ANOVAs, and correlational analyses were conducted. The results showed that during the lockdown, attendance at therapies and extra-moenia activities and participation in school activities drastically dropped. During lockdown, parents felt inadequate. The parental stress and anxiety were moderate, but the perception of support dropped significantly.

An update of the reported effects of the COVID-19 pandemic on person with intellectual disability and their carers: a scoping review.

BACKGROUND: The effects of the COVID-19 pandemic has been felt by all groups in society and people with intellectual disability are especially vulnerable due to underlying conditions/health problems, multi-morbidity, limitations in understanding, frailty and social circumstances. This places people with intellectual disability, their families and carers at increased risk of stress and in need of support. OBJECTIVE: To update and chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability, their families and carers reported within the research in 2021. METHODS: A scoping review of research published in 2021 across 7 databases. RESULTS: 84 studies met the inclusion criteria, and the findings highlight people with intellectual disability are at a greater risk to COVID-19 health outcomes due to underlying health concerns and access issues. The effects of COVID-19 can be seen from a personal, social and health perspective for people with intellectual disability, their carers and families. However, COVID-19 did have some unanticipated benefits such as: less demand on time, greater opportunity to engage with people of value and building resilience. CONCLUSIONS: COVID-19 presents many challenges but for people with intellectual disability compounding existing obstacles encountered in access issues, service provision and supports available. There is a need to identify and describe the experiences of people with intellectual disability, their families and carers in the medium-long term during COVID-19. Greater supports and evidence of effective interventions to promote health, deliver services and support individual with intellectual disability is needed as there is little evidence of clinical care for people with intellectual disability during COVID-19.

During pandemics the perspectives of people with intellectual disability, their carers and service providers are central to addressing systemic health care inequalities and poor-quality person-centred care.Greater collaboration is needed to learn from pandemics in terms of health and social care policy improvements.There remains a need for large scale studies that are representative of the broad spectrum of the intellectual disability population and examine Long-COVID in this group of people.

The experiences and attitudes of family caregivers of adults with intellectual and developmental disabilities at different timepoints in the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has resulted in increased pressures for family caregivers of adults with intellectual and developmental disabilities (IDD). However, little is known about how their attitudes and perceptions have changed over the course of the pandemic. OBJECTIVE: To compare the COVID-19 experiences and attitudes of two groups of family caregivers, reported at different timepoints in the pandemic: prior to vaccine availability and after. METHODS: As part of a larger research study, family caregivers of adults with IDD from across Canada completed surveys on their COVID-19 experiences. Survey questions included responses about access to supports, stressors, self-efficacy, mental wellbeing, and pandemic impacts on their family member with IDD. Respondents were assigned to either of two groups based on the time of questionnaire completion: late 2020/early 2021 for Group 1 and mid 2022 for Group 2. Descriptive statistics and analysis between groups were reported. RESULTS: Despite being surveyed at different timepoints in the pandemic, both groups indicated concerns regarding lack of professional support and resources, lack of programming, and experiences of loneliness for their family members. However, Group 2 reported greater self-efficacy dealing with COVID-19 related challenges and greater overall mental wellbeing, compared to Group 1. Group 2 caregivers, after which vaccines were widely available in Canada, were largely vaccinated (96.4%). CONCLUSIONS: Despite the COVID-19 pandemic persisting for over two years, family caregivers of adults with IDD reported facing the same challenges as families who reported on their experiences a year prior. Notwithstanding, family caregivers surveyed later in the pandemic described a greater sense of self-efficacy and mental wellbeing.