[The situation of people with intellectual and developmental disabilities in the COVID-19 pandemic-risk factors, problem areas, and measures]. / Die Situation von Menschen mit geistiger Behinderung in der COVID-19-Pandemie ­ Risikofaktoren, Problembereiche, Maßnahmen.

Many people with intellectual and developmental disabilities (IDD) were much more affected by COVID-19 than the average population. The morbidity in this population group was significantly higher due to the form of their housing and care as well as disability-associated health factors (such as Down's syndrome). This led, among other things, to a higher incidence of inpatient settings, a higher mortality rate among hospitalized patients, and a higher case fatality rate among certain subgroups. Risk factors were co-diseases such as dysphagia, epilepsy, or mental disorders. In addition, there were health consequences from restrictive exposure prophylaxis measures at the beginning of the COVID-19 pandemic.This overview article describes the main developments in the care of people with IDD since the beginning of the pandemic. New mental problems or an increase in existing mental problems occurred more frequently in people with IDD who were cared for on an outpatient basis or by relatives. People with IDD in inpatient residential facilities were less frequently affected. The main reasons for psychological problems were lack of social contacts, lost work and employment opportunities, the frightening pandemic situation, and the major structural and personnel changes in the facilities at the beginning of the pandemic. During the pandemic, there were also problems with the implementation of therapeutic and preventive measures. On the other hand, especially in the inpatient area, the "slowing down of life" associated with the restrictions at the beginning of the pandemic also had a stress-reducing effect on some of the people with IDD and was perceived by them as something positive. Caregivers had more time for the genuine (i.e., pedagogical) work. Overall, it was shown that health-promoting measures must also take into account the great heterogeneity of the people with IDD and their living conditions during the pandemic.

Caring for a child with a life limiting condition: The experiences of nurses in an intellectual disability service provider.

This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and was subsequently analysed using qualitative thematic content analysis. The findings identified a range of complexities unique to the care of children with life-limiting conditions in the intellectual disability setting. From the findings, it is clear that this is a population of highly skilled nurses who work in a challenging and complex area of practice. Further supports are required in order to meet the practice needs and support the emotional needs of this population of nurses. In doing so, high quality practice within the area will be promoted, thereby ensuring high quality care for the children and families within the disability service.

The Impact of Administration Formats on SIS-A Scores.

Many U.S. states use the Supports Intensity Scale-Adult Version (SIS-A; Thompson et al., 2015) to inform the distribution of public funds for long-term services and supports. Throughout the COVID-19 pandemic, many states began administering the SIS-A virtually instead of in person. Because administration format has the potential to influence SIS-A scores and, consequently, impact the funding people receive for long-term services and supports, this study examined the stability of support need scores, as measured by the SIS-A, over two time periods: (a) when assessments were conducted in person and (b) when assessments were conducted virtually using remote technology. Specifically, the influence of assessment administration formats on SIS-A scores and on the perceptions of SIS-A assessors were investigated. Results revealed that the virtual administration format impacted SIS-A scores, but the impact was of little to no practical importance.

The Experiences of Outreach Support Staff Working with People with Mild Intellectual Disabilities during Different Stages of the COVID-19 Pandemic in the Netherlands: A Qualitative Study.

The COVID-19 pandemic profoundly impacted the work of professionals who support people with intellectual disabilities. This study aimed to explore the experiences of outreach support staff supporting people with mild intellectual disabilities in the Netherlands during different phases of the pandemic between March 2020 and May 2021. Overall, seven outreach support staff from three intellectual disability services participated in this qualitative study. Using semi-structured interviews, participants were interviewed on three occasions between December 2020 and May 2021. A thematic analytical framework was used to analyze the interviews. Four overarching themes could be distinguished based on the data: (1) balancing between one's professional and personal life; (2) vaccination as both a stress reducer and a source of agitation; (3) service users: vulnerable versus resilient; and (4) contact with colleagues and service users. These themes provided valuable insights into the experiences of outreach support staff during different phases of the pandemic, both in the enduring impact of the pandemic and its measures on support staff, as well as in terms of how the pandemic and its preventive measures impacted their profession.

Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome.

Cannabidiol (CBD) is a non-intoxicating chemical in cannabis plants that is being investigated as a candidate for treatment in Fragile X Syndrome (FXS), a leading known cause of inherited intellectual developmental disability. Studies have shown that CBD can reduce symptoms such as anxiety, social avoidance, hyperactivity, aggression, and sleep problems. This is a qualitative study that utilized a voluntary-anonymous survey that consisted of questions regarding demographics, medical information, the form, type, brand, dose, and frequency of CBD use, the rationale for use, the perception of effects, side effects, and costs. The full survey contained a total of 34 questions, including multiple-choice, Likert-scale, and optional free-response questions. This research revealed that there are a wide range of types, brands, and doses of CBD being administered to individuals with FXS by their parents and caregivers. There were many reasons why CBD was chosen, the most common ones being that respondents had heard positive things about CBD from members of the community, the perception that CBD had fewer side effects than other medications, and because respondents felt that CBD was a more natural substance. Most of the parents and caregivers who responded agreed that CBD improved some of the symptoms of FXS and made a positive difference overall. CBD has the therapeutic potential to help relieve some FXS symptoms. Future research is necessary to understand the benefits of CBD in FXS.

Health Equity for Individuals With Intellectual and Developmental Disabilities.

This Viewpoint discusses 3 types of systemic health inequity experienced by individuals with intellectual and developmental disabilities­stigma, exclusion, and devaluation of worth; underrepresentation in population epidemiology and research; and inadequate access to care and social services­and suggests potential approaches to ameliorating inequities in each of these areas.

Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study.

Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual disability. Data from the international CLIC study were analysed. In total, 3930 carers responded from four groups; people who care for those with mental health difficulties (n = 491), dementia (n = 1888), physical disabilities (n = 1147), and Intellectual disabilities (n = 404). Cross tabulation and the chi-squared test were used to compare group compositions and binary logistic regression to model predictors within the intellectual disability group. A total of 65% of those caring for people with an intellectual disability experienced increased burden, and 35% of carers of people with an intellectual disability and another condition experienced more severe loneliness. Becoming severely lonely was predicted by feeling burdened by caring (AOR, 15.89) and worsening mental health (AOR, 2.13) Feeling burden was predicted by being aged between 35 and 44 (AOR, 4.24), poor mental health (AOR, 3.51), and feelings of severe loneliness prior to the pandemic (AOR, 2.45). These findings demonstrate that those who were already struggling with caring experienced the greatest difficulties during the COVID-19 lockdowns.

Views of Speech-Language Pathologists on Telepractice for Children Who Use Augmentative and Alternative Communication.

Telepractice has become increasingly utilized in disability services, particularly with recent and ongoing measures to slow the spread of the novel coronavirus (COVID-19). In this study, 361 speech-language pathologists (SLPs) responded to a national, web-based survey about their views on utilizing telepractice with children aged 3 to 21 who used aided augmentative and alternative communication (AAC), such as picture symbols or speech-generating devices. The views of SLPs varied, and SLPs who received training on AAC telepractice within the last 12 months had more positive views about telepractice than those who did not. Several factors were associated with when and how SLPs thought telepractice was beneficial to serve children who use aided AAC, including SLPs' foundational perspectives about telepractice, service delivery options, considerations related to the child and family, and broader resources and constraints.

The Role of Information and Knowledge in COVID-19 Vaccination Among People With Intellectual and Developmental Disabilities and Their Families.

People with intellectual and developmental disabilities (IDD) may be at an increased risk of severe illness and death from COVID-19. This article examines the role of information and knowledge in COVID-19 vaccine uptake for people with IDD and their families. We developed a survey about COVID-19 vaccine uptake, confidence, and knowledge for people with IDD and their families. COVID-19 vaccine uptake was associated with higher self-reported knowledge about the vaccine, learning about the vaccine from one's doctor, and social media use. Qualitative results reflected the importance of trusted relationships with medical providers in vaccination.

Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated and Unvaccinated Direct Support Professionals.

Direct support professionals (DSPs) may be at increased risk of contracting COVID-19 due to the proximal nature of their work. In response to the pandemic a three-wave study was launched to understand experiences of DSPs. An on-line national survey found that 70% of DSPs were vaccinated. Vaccinated DSPs were older and had higher education levels. Among the unvaccinated, 56% reported concerns about COVID-19 vaccination safety. Unvaccinated DSPs were more likely to report that the people they supported were also unvaccinated. Encouraging DSPs to get vaccinated to protect the people they support is essential. Paid time off, arranging for vaccinations, and setting an expectation for vaccination may encourage vaccination uptake among DSPs.

Predictors Associated With Mental Help Seeking Attitude Among Malaysian College Foundation Students in the Midst of Covid-19 Pandemic: a Cross Sectional Study (preprint)

Background Globally, the Coronavirus Disease-2019 (COVID-19) pandemic results in major psychological sequalae across age groups including adolescents. Mental illness rates are high, yet mental help seeking attitude (MHSA) among adolescents is evidently low in developed countries during the pandemic. However, data is scarce in developing countries, hence the aim of this study was to determine the MHSA and its predictors including psychological wellbeing of Malaysian college foundation students during the COVID-19 pandemic. Methods A cross sectional study was conducted among college foundation students, aged 18 to 19 years old, from a private college in Klang Valley from 1st December 2021 until 30th March 2022. All college foundation students were invited, and eligible students completed self-administered online questionnaires. Data on MHSA, sociodemographic, clinical factors, availability, accessibility and affordability of mental health service, mental health literacy, self-stigma of seeking help and psychological wellbeing were collected. An independent T-test analysis was performed to compare mean of MHSA between psychological distressed and non-psychological distressed. Multiple linear regression analysis was done to identify predictors of MHSA. Results 345 participants completed the questionnaires and the response rate was 62.9%. The mean age was 18.7 (± 0.75) years old. More than half were female (64.3%, n=222) and a majority had no past history of mental health illness (95.1%, n=328). Almost half had personal history of COVID-19 infection (49.3%, n=170). The mean of MHSA was 50.98 ±10.39. The predictors associated with MHSA were; self-stigma of help seeking (β=-0.59 (95% CI: -0.76, -0.42) p<0.01); mental health literacy (β=0.22 (95% CI: 0.13, 0.30) p<0.01); and affordability of mental health service facility (β=3.29 (95% CI: 1.42, 5.16) p<0.01). The prevalence of psychologically distressed was 23.2%, (95%CI: 20.4, 26.1), in which psychological distressed had a higher mean of MHSA than that of non-psychological distressed (53.29 ±10.48 vs. 50.29 ±10.29, p=0.02) Conclusion Mental help seeking attitude among Malaysian college foundation students was low during the COVID-19 pandemic. This may result in lost opportunities for early diagnosis and treatment. Strategies to reduce self-stigma of seeking help for mental illness is vital, while efforts to educate young adults about mental health and make mental health services affordable are warranted.

Risk for Severe COVID-19 Outcomes among Persons with Intellectual Disabilities, the Netherlands.

The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.

Effects of COVID-19 related physical inactivity on motor skills in children with intellectual disability.

BACKGROUND: Children with intellectual disabilities (ID) may show declines in motor skills during the Covid-19 restrictions. This study compared the effects of physical inactivity due to COVID-19 on the motor skills of active and inactive children with ID. METHOD: In this prospective cohort study, 30 boys with ID were divided into two groups based on study inclusion criteria (mean age 10.86 ± 1.81 active, 10.20 ± 1.42 inactive). The BESS test, the Y test, the Timed Up and Go (TUG) test, and the Bruininks-Oseretsky test-short form were used. RESULTS: Results showed a significant difference between active and inactive groups in the total score of gross motor skills (P = 0.001), fine motor skills (P = 0.002), motor skills (P = 0.001), postural control (P = 0.01), and dynamic balance (P = 0.01). CONCLUSIONS: The results showed a significant difference between active and inactive children with ID in terms of gross and fine motor skills after a one-year movement restriction. Therefore, considering the tendency to be sedentary among these people and the subsequent complications caused by this inactivity, including obesity and chronic diseases, it is suggested that parents and educators design practical and numerous exercises and encourage them to be more active and participate in physical activity programs.

Accessibility of child protection investigations during pandemic: A qualitative analysis of court proceedings.

BACKGROUND: Qualitative research using published court records to examine contextual factors that contribute to child protection decisions in cases involving parents with intellectual disabilities is limited, particularly during the COVID-19 pandemic. METHOD: The present study conducted qualitative content analysis on 10 published Ontario court cases to study child protection decision-making between 2019 and 2021. RESULTS: The findings corroborated previous literature with nine out of 10 cases resulting in loss of child custody. Four major themes emerged from content analysis: (1) Impact of COVID-19 pandemic on cases; (2) Systemic barriers to accessibility; (3) Attitudes and bias toward parents with intellectual disabilities; and (4) Ultimate reliance on intellectual disability status for final custody decision. CONCLUSIONS: Conducting content analysis on published court cases is useful in learning about accessibility barriers for parents with intellectual disabilities and may help in understanding the impact of the COVID-19 pandemic on the child protection system.

Partner Relationships, Hopelessness, and Health Status Strongly Predict Maternal Well-Being During the COVID-19 Pandemic: A Machine Learning Approach (preprint)

No recent studies have explicitly focused on predicting the well-being of pregnant women during the novel coronavirus disease (COVID-19) pandemic. This study used data from an extensive online survey in Japan to examine predictors of the subjective well-being of pregnant women during the COVID-19 pandemic. We developed and validated a machine learning model using data from 400 pregnant women obtained in 2020 to identify three factors that predict subjective well-being. The results confirmed that the model could predict pregnant women's subjective well-being with 84% accuracy. The variables that contributed significantly to this prediction were "partner help," "hopelessness," and "health status." The machine learning model was built again using these three factors, trained and validated using data from 400 pregnant women in 2020, and predicted using data from 1,791 pregnant women in 2021, with an accuracy of 88%. These were also significant risk factors for subjective well-being in regression analysis adjusted for maternal age, region, parity, education level, and presence of mental illness. This model would help identify pregnant women with low subjective well-being during the COVID-19 pandemic, and appropriate interventions can then be initiated.

The impact of the COVID-19 pandemic on Antipsychotic Prescribing in individuals with autism, dementia, learning disability, serious mental illness or living in a care home: A federated analysis of 59 million patients primary care records in situ using OpenSAFELY (preprint)

Background: The COVID-19 pandemic significantly affected health and social care services. We aimed to explore whether this impacted the prescribing rates of antipsychotics within at-risk populations. Methods With the approval of NHS England, we completed a retrospective cohort study, using the OpenSAFELY platform to explore primary care data of 59 million patients. We identified patients in five at-risk groups: autism, dementia, learning disability, serious mental illness and care home residents. We then calculated the monthly prevalence of antipsychotic prescribing in the population, as well as the incidence of new prescriptions in each month over the study period (Jan 2019-Dec 2021). Results The average monthly rate of antipsychotic prescribing increased in dementia from 82.75 patients prescribed an antipsychotic per 1000 patients (95% CI 82.30-83.19) in Q1 2019 to 90.1 (95% CI 89.68-90.60) in Q4 2021 and from 154.61 (95% CI 153.79-155.43) in Q1 2019 to 166.95 (95% CI 166.23-167.67) in Q4 2021 in care homes . There were notable spikes in the rate of new prescriptions issued to patients with dementia and in care homes. In learning disability and autism groups, the average monthly rate of prescribing per 1000 decreased from 122.97 (95% CI 122.29-123.66) in Q1 2019 to 119.29 (95% CI 118.68-119.91) in Q4 2021, and from 54.91 (95% CI 54.52-55.29) in Q1 2019 to 51.04 (95% CI 50.74-51.35) in Q4 2021 respectively. Conclusions During each of the lockdowns in 2020, we observed a significant spike in antipsychotic prescribing in the dementia and care home groups. We have shown that these peaks are likely due to prescribing of antipsychotics for palliative care purposes and may have been linked to pre-emptive prescribing, when on-site medical visits would have been restricted. Over the study period, we observed gradual increases in antipsychotic use in patients with dementia and in care homes and a decrease in their use in patients with learning disability or autism.

'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long-term care planning during the COVID-19 pandemic.

BACKGROUND: Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands. METHOD: Twenty-five semi-structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. RESULTS: Family carers were recurrently concerned with long-term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID-19 pandemic reinforced awareness of long-term care planning and moved some to action. CONCLUSIONS: The perceived urge to plan by family carers has grown due to the COVID-19 pandemic. The current study provides valuable insights for stakeholders to support them in this.

Hydranencephaly in CENPJ-related Seckel syndrome.

Pathogenic variants in CENPJ have been first identified in consanguineous Pakistani families with Hereditary Primary Microcephaly type 6 (MCPH6). In addition to primary microcephaly, the CENPJ-related phenotypic spectrum lately included also distinctive and peculiar 'bird-like' craniofacial dysmorphisms, intrauterine and/or postnatal growth retardation, and moderate to severe intellectual disability (ID). These features are also part of the clinical spectrum of Seckel syndrome (SCKL) a genetically heterogeneous neurodevelopmental condition caused by mutations in different genes involved in cell cycle progression. Among these, CENPJ is responsible for type 4 Seckel syndrome (SCKL4). The literature reports two individuals affected by SCKL4 suffering from seizures and other two individuals with other brain malformations in addition to microcephaly. However, neither epilepsy nor brain malformations are described in detail and genotype-phenotype information remains limited. We describe the first Caucasian affected with SCKL4 and harboring a novel, homozygous mutation in CENPJ. We detail the clinical and neuroradiological findings including structural focal epilepsy and a severe brain malformation (i.e., hydranencephaly) that was never associated with SCKL4 to date.

Preliminary Results of an Interdisciplinary Behavioral Program to Improve Access to Preventative Dental Care for Adults With Intellectual and Developmental Disabilities.

Adults with intellectual and developmental disabilities (AIDD) experience significant oral health disparities, partially due to perceived behavioral issues. This article describes the preliminary outcomes of a developing interdisciplinary (dental, medical, behavioral) program involving a behavioral intervention for AIDD previously receiving preventative dental care with sedation, general anesthesia, or protective stabilization (SAS). After a baseline assessment, a board-certified behavior analyst implemented increasingly complex behavioral interventions during simulated dental visits. Prior to COVID-19 pandemic-related restrictions, there were 32 active participants; 15 (46.9%) successfully completed a focused, real dental exam with simple behavioral interventions and 17 (53.1%) remain in treatment. These preliminary results suggest that many AIDD previously receiving SAS may participate in a preventative dental exam with minimal behavioral supports, if given the opportunity.

An integrated primary care service to reduce cardiovascular disease risk in people with severe mental illness: Primrose-A. Thematic analysis of its acceptability, feasibility, and implementation. (preprint)

Background Cardiovascular disease among patients with severe mental illness in England is a major preventable contributor to premature mortality. To address this, a nurse and peer-coach delivered service (Primrose-A) was implemented in three London general practices from 2019 (implementation continued during COVID-19). This study aimed to conduct interviews with patient and staff to determine the acceptability of, and experiences with, Primrose-A.Methods Eight patients who had received Primrose-A, and 3 nurses, 1 GP, and 1 peer-coach who had delivered Primrose-A in three London-based GP surgeries. Semi-structured audio-recorded interviews were conducted. Reflexive thematic analysis was used to identify themes from the transcribed interviews.Findings Overall, Primrose-A was viewed positively by patients and staff, with participants describing success in improving patients’ mental health, isolation, motivation, and physical health. Therapeutic relationships between staff and patients, and long regular appointments were important facilitators of patient engagement and acceptance of the intervention. Several barriers to the implementation of Primrose-A were identified, including training, administrative and communication issues, burden of time and resources, and COVID-19.Conclusions Intervention acceptability could be enhanced by providing longer-term continuity of care paired with more peer-coaching sessions to build positive relationships and facilitate sustained health behaviour change. Future implementation of Primrose-A or similar interventions should consider: 1) training sufficiency (covering physical and mental health, including addiction), 2) adequate staffing to deliver the intervention, 3) facilitation of clear communication pathways between staff, and 4) supporting administrative processes.