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2.
J Policy Pract Intellect Disabil ; 17(3): 256-269, 2020 Sep.
Article in English | MEDLINE | ID: covidwho-1949684

ABSTRACT

The current COVID-19 pandemic is a pressing world crisis and people with intellectual disabilities (IDs) are vulnerable due to disparity in healthcare provision and physical and mental health multimorbidity. While most people will develop mild symptoms upon contracting severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2), some will develop serious complications. The aim of this study is to present guidelines for the care and treatment of people with IDs during the COVID-19 pandemic for both community teams providing care to people with IDs and inpatient psychiatric settings. The guidelines cover specific issues associated with hospital passports, individual COVID-19 care plans, the important role of families and carers, capacity to make decisions, issues associated with social distancing, ceiling of care/treatment escalation plans, mental health and challenging behavior, and caring for someone suspected of contracting or who has contracted SARS-CoV-2 within community or inpatient psychiatric settings. We have proposed that the included conditions recommended by Public Health England to categorize someone as high risk of severe illness due to COVID-19 should also include mental health and challenging behavior. There are specific issues associated with providing care to people with IDs and appropriate action must be taken by care providers to ensure that disparity of healthcare is addressed during the COVID-19 pandemic. We recognize that our guidance is focused upon healthcare delivery in England and invite others to augment our guidance for use in other jurisdictions.

3.
Sex Disabil ; 40(1): 3-20, 2022.
Article in English | MEDLINE | ID: covidwho-1881511

ABSTRACT

Multiple Sclerosis (MS) is a neurological condition which usually manifests between the ages of 20-40 years. This is a critical period for developing relationships, particularly romantic relationships. People with MS can experience sexual dysfunction, limb weakness, fatigue, pain, reduced mood and bladder/bowel dysfunction; potentially affecting their ability to participate in many meaningful activities, including those associated with romantic relationships, dating or engaging in sexual intercourse. Dating or starting romantic relationships can be difficult for people with physical disabilities as they can experience stigma, negative societal attitudes and the fear of requiring care from potential partners. Dating experiences of people with progressive conditions like MS have not been explored in detail. The aim of this study was to develop a rich understanding of how living with MS interacts with/influences dating and developing romantic relationships. The study used a descriptive phenomenological design and a purposive sampling strategy. Colaizzi's descriptive phenomenological method was used to analyze the data (Colaizzi, 1978). Five females and two males, aged 23-51, participated in two online focus groups. Dating with a diagnosis of MS is a highly personal phenomenon, characterized by individual differences in values and experiences. Core to the phenomenon was personal decision-making about disclosure of the diagnosis and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. The findings will help health professionals working with adults with MS understand this important aspect of their lives.

4.
Eur J Neurol ; 28(10): 3375-3383, 2021 Oct.
Article in English | MEDLINE | ID: covidwho-1604393

ABSTRACT

BACKGROUND AND PURPOSE: In multiple sclerosis (MS), disease-related factors and dysfunctional coping might favor the development of mental distress induced by COVID-19 containment measures. Aim of this study was exploring the relationship between disability, coping strategies, daily life reorganization and neuropsychiatric symptoms in an Italian MS population during the COVID-19 lockdown, in order to identify potentially modifiable factors that could inform clinical management of mental distress in people with MS. METHODS: We explored the relationship between mental distress, disability and coping strategies in the Italian MS population under lockdown. Structural equation modeling was applied to information collected via web survey to identify modifiable factors that could account for mental distress. RESULTS: A total of 845 participants (497 with MS and 348 controls) were included in the study. The MS group had higher scores than the control group for depression (p = 0.005), but not for anxiety, emotional dyscontrol or sleep disturbances. The structural equation modeling explained 74% of the variance observed in depression score. Within the model, three latent factors were characterized from measured variables: motor disability and cognitive dysfunction contributed to disability (ß = 0.509 and ß = 0.836; p < 0.001); positive attitude and exercise contributed to active attitude (ß = 0.386 and ß = 0.297; p < 0.001); and avoidance, social support and watching television contributed to passive attitude (ß = 0.301, ß = 0.243 and ß = 0.212; p < 0.001). With regard to the relationship between latent factors and their influence on depression, disability contributed to passive attitude (ß = 0.855; p < 0.001), while both passive and active attitude significantly influenced depression (ß = 0.729 and ß = -0.456; p < 0.001). CONCLUSION: As a practical implication of our model, favoring exercise would enhance active attitude and its positive impact on mental well-being while, at the same time, reducing the negative impact of disability on depression, representing a valuable tool in facing COVID-19-related mental distress.


Subject(s)
COVID-19 , Disabled Persons , Motor Disorders , Multiple Sclerosis , Anxiety , Communicable Disease Control , Depression/epidemiology , Humans , Multiple Sclerosis/epidemiology , Pandemics , SARS-CoV-2 , Surveys and Questionnaires
6.
Public Adm Rev ; 81(6): 1192-1196, 2021.
Article in English | MEDLINE | ID: covidwho-1526400

ABSTRACT

While Coronavirus Disease 2019 (COVID-19) does not discriminate against particular groups, our social structures and systems mean some people are more at risk in a pandemic context-from both the disease and the social and policy responses to the pandemic. This is particularly so for people with disability, in part because they often have poorer health outcomes from underlying conditions but also due to discrimination and social exclusion. Here, we draw from a survey about the impacts of the COVID-19 pandemic on Australian children and young people with disability and their families. Respondents faced a range of inequities prior to the pandemic, and COVID-19 has further exposed and often exacerbated them. We conclude that recent developments in the Australian disability context to personalize services have arguably made people with disability and their families less safe within a pandemic context, and we outline some ways in which these issues might be addressed.

7.
Int J Environ Res Public Health ; 17(24)2020 12 19.
Article in English | MEDLINE | ID: covidwho-1362362

ABSTRACT

Informal caregivers are people providing some type of unpaid, ongoing assistance to a person with a chronic illness or disability. Long-term care measures and policies cannot take place without taking into account the quantitatively crucial role played by informal caregivers. We use the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS), and the Study on Health and Ageing in Europe (SHARE) to measure the prevalence of informal caregivers in the European population, and analyze associated socio-demographic factors. This rate ranges between about 13 percent in Portugal and Spain, and more than 22 percent in Luxembourg, Belgium, and Denmark. It declines in older age groups and, on average, is lower in men than in women in all countries studied, and lower among the poorly educated compared to those with higher levels of education. However, large variance was observed in the average share of informal caregivers for most countries between the three surveys. Our findings, estimated through the three surveys, reveal common trends, but also a series of disparities. Additional research will be needed to enable policy makers to access a richer and more harmonized body of data, allowing them to adopt truly evidence-based and targeted policies and interventions in this field.


Subject(s)
Caregivers/statistics & numerical data , Patient Care/statistics & numerical data , Quality of Life/psychology , Aged , Aged, 80 and over , Caregivers/psychology , Europe , Female , Humans , Male , Patient Care/psychology , Prevalence
9.
BMC Res Notes ; 14(1): 233, 2021 Jun 14.
Article in English | MEDLINE | ID: covidwho-1269889

ABSTRACT

OBJECTIVE: The main aim of the study was to assess the impact of COVID-19 pandemic on athletes preparing for the Tokyo 2021 Paralympic Games during 1 month of lockdown in Poland. The study involved 166 athletes (106 male, 66 female), members of either the Polish Paralympic Committee or the Polish Sports Association for the Disabled'Start', two organizations responsible for managing and regulating sports played by persons with disabilities in Poland. RESULTS: Athletes with disabilities have been strongly affected by the pandemic and the resultant lockdown. The majority of respondents reported that they trained at home (88.6%), whereas 60.2% of athletes trained outdoors, and 12% suspended their training regimens altogether. Only 5.4% of athletes had some access to sport facilities. The athletes reduced their weekly training time by almost half (9.4 h/week vs. 5.3 h/week), a statistically significant difference (t = 16.261, p < 0.001).


Subject(s)
COVID-19 , Disabled Persons , Athletes , Communicable Disease Control , Female , Humans , Male , Pandemics , SARS-CoV-2 , Tokyo/epidemiology
10.
Disaster Med Public Health Prep ; : 1-3, 2021 Mar 25.
Article in English | MEDLINE | ID: covidwho-1263407

ABSTRACT

Individuals with intellectual disabilities face discrimination on a daily basis. The coronavirus disease (COVID-19) pandemic has highlighted the systemic ableism that is embedded within American culture, particularly through health care bias and discrimination. In turn, this creates further marginalization during diagnosis, triage, and treatment of the novel coronavirus. Multiple states have filed complaints against state triage protocols that suggest an abled life is more worthy than a life with a disability. Although many of these protocols have been updated and replaced, generalized triage statements fail to address health care bias that is embedded within the American system. In addition to the existing solutions, proposed solutions to addressing health care bias include integrating social workers into the emergency management process and the overall disaster management field. To combat bias and ableism across the health care system, a social justice perspective that highlights discrimination, inequalities, and inequities in overall individual care must be adopted.

11.
Ann Med ; 53(1): 786-804, 2021 12.
Article in English | MEDLINE | ID: covidwho-1263598

ABSTRACT

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


Subject(s)
COVID-19 , Caregivers , Intellectual Disability , Humans
12.
Disabil Health J ; 14(4): 101126, 2021 10.
Article in English | MEDLINE | ID: covidwho-1252659

ABSTRACT

BACKGROUND: People with a physical disability are more inactive than the general population. Due to the positive effects of physical activity (PA) on physical and mental health, maintaining a physically active lifestyle is important especially during challenging periods of life. OBJECTIVE: Explore whether people with a physical disability experienced changes in PA, health status, and psychological need satisfaction (autonomy, competence and relatedness) during the first wave of the COVID-19 pandemic in Norway. Further, explore whether changes in psychological need satisfaction were associated with changes in PA level and mental health. METHODS: Cross-sectional retrospective study using an online self-reported questionnaire after the first wave during the COVID-19 pandemic. RESULTS: Of the 298 participants with physical disabilities (AgeM = 49yr; 62% females; 66% using mobility aids), 66% reported decreased PA compared to the same period in the previous year, 45% reported declined health status due to increased pain and reduced physical functioning. Regarding psychological need satisfaction, it was primarily the change in need for autonomy and competence for PA that were associated with change in PA and mental health. CONCLUSIONS: Most of the participants indicated decreased PA and about half decreased Health status during the COVID-19 pandemic. Further, the results indicated that it is important to nurture the basic psychological needs of autonomy and competence for PA when aiming to maintain or increase PA levels and mental health for this population living under restrictions of a pandemic.


Subject(s)
COVID-19 , Disabled Persons , Cross-Sectional Studies , Exercise , Female , Humans , Male , Mental Health , Norway/epidemiology , Pandemics , Retrospective Studies , SARS-CoV-2
13.
Assist Technol ; : 1-9, 2021 Jun 24.
Article in English | MEDLINE | ID: covidwho-1246591

ABSTRACT

The COVID-19 pandemic is emerging as a driver of greater reliance on wireless technologies, including intelligent assistive technologies, such as robots and artificial intelligence. We must integrate the humane "into the loop" of human-AT interactions to realize the full potential of wireless inclusion for people with disabilities and older adults. Embedding ethics into these new technologies is critical and requires a co-design approach, with end users participating throughout. Developing humane AT begins with a participatory, user-centered design embedded in an iterative co-creation process, and guided by an ethos prioritizing beneficence, user autonomy and agency. To gain insight into plausible AT development pathways ("futures"), we use scenario planning as a tool to articulate themes in the research literature. Four plausible scenarios are developed and compared to identify one as a desired "humane" future for AT development. Policy and practice recommendations derived from this scenario, and their implications for the role of AT in the advancement of human potential are explored.

14.
J Autism Dev Disord ; 52(5): 2350-2356, 2022 May.
Article in English | MEDLINE | ID: covidwho-1245687

ABSTRACT

The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health's FH® NPIC (National Private Insurance Claims) database, one of the nation's largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD + ID were nine times more likely to be hospitalized following COVID-19 infection (OR = 9.3; 95% CI: 6.9-12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR = 5.9; 95% CI: 3.5-10.1) compared to those without ASD + ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Insurance , Autism Spectrum Disorder/epidemiology , COVID-19/epidemiology , Humans , Length of Stay , Pandemics
15.
Psychol Rep ; : 332941211018404, 2021 May 26.
Article in English | MEDLINE | ID: covidwho-1243752

ABSTRACT

The COVID-19 pandemic is a source of anxiety globally, and lockdowns have increased anxiety symptoms, contributed to economic stress, and influenced an increase in prejudice, particularly prejudice directed at the elderly and people with disabilities. Terror management theory serves as an explanation for the association between COVID-19 anxiety, ageism, and ableism. Recruiting participants from Amazon MTurk, I assessed anxiety about COVID-19, ageism, and ableism. Hierarchical linear regression analyses demonstrate that COVID-19 anxiety is significantly associated with ageism, and with ableism, as well as age and gender. The results of this study have implications for the effect of COVID-19 anxiety on those who are most vulnerable in the current pandemic, particularly with regards to isolation and social connection; those who are most anxious about the pandemic might spend less time trying to connect with their older friends and relatives, and likewise for the people in their lives who might have a disability.

16.
Psychiatr Serv ; 72(10): 1209-1212, 2021 10 01.
Article in English | MEDLINE | ID: covidwho-1238633

ABSTRACT

OBJECTIVE: This study sought to characterize the incidence of COVID-19 illness, hospitalization, and death among congregate and noncongregate cohorts served by a New York City behavioral health agency. METHODS: From March 9 to May 3, 2020, data were collected on COVID-19 symptoms, testing, hospitalization, and mortality for 8,256 individuals living in 29 congregate programs (residences and homeless shelters) or served by 41 noncongregate programs (scattered-site housing or outpatient treatment programs). RESULTS: Of the 218 (2.6%) individuals who developed COVID-19-like illness, 84 (39%) were able to obtain testing. Of the 77 individuals who tested positive, 49 (64%) were hospitalized and 19 (25%) died. Congregate housing, age over 45, and intellectual/developmental disabilities were significantly associated with hospitalization and death. CONCLUSIONS: Further research on risk and preventive factors is needed to address the high risk for people with serious mental illnesses and intellectual/developmental disabilities during a pandemic, particularly for those living in congregate housing.


Subject(s)
COVID-19 , Homeless Persons , Housing , Humans , New York City/epidemiology , SARS-CoV-2
17.
J Clin Nurs ; 2021 May 22.
Article in English | MEDLINE | ID: covidwho-1238447

ABSTRACT

AIMS AND OBJECTIVES: To examine what was known about disaster preparedness in residential care and to consider this in the light of the current COVID-19 pandemic. BACKGROUND: Care homes provide long-term care to vulnerable, frail older people, as well as to young people with profound disabilities. The COVID-19 pandemic has shown that the residential care sector has been seriously affected in many parts of the world and has exposed major flaws and vulnerabilities in infection control and other processes that have resulted in considerable loss of life of residents of these facilities. DESIGN: Discursive paper informed by a systematic literature. Review was carried out in line with PRISMA reporting guidelines. The review protocol was registered with PROSPERO on 2020 [CRD42020211847]. RESULTS: The review identified six papers meeting inclusion criteria across care residential facilities in different countries. Several prevention and mitigation strategies were identified to manage and reduce the spread and severity of viral respiratory infection pandemics. These strategies include isolation, restriction of movement, personal protective and hygienic measures, health education and information sharing, monitoring and coordination, and screening and treatment. Preparedness strategies identified were contingency planning such as reporting/communication, leadership, human resource, insurance, occupational health and resource availability. The prevention/mitigation and preparedness strategies helped to achieve decline in disease severity, reduced prevalence, reduced spread of the disease, improved readiness criteria, resource usefulness and increased intervention acceptability. This paper presents a conceptual framework exploring the interconnectedness of preparedness and prevention/ mitigation strategies and associated outcomes. We discuss areas of concern in the context of workforce employment patterns in the sector. Concerns related to the unintended consequences of strategies placed on aged care facilities, which may worsen mental health outcomes for residents, are discussed. CONCLUSIONS: Persons in residential care settings are at greater risk of infection during a pandemic, and therefore, strict measures to protect their safety are warranted. However, they are also a group who already experience social isolation and so any measures involving restrictions to visiting and social interaction, particularly over the longer term, must be accompanied by strategies to mitigate potential loneliness and mental health sequelae arising from long-term pandemic restrictions. RELEVANCE TO CLINICAL PRACTICE: Though there was evidence of activity in preparedness for disasters within the residential care sector, various contextual factors affecting the sector were clearly not adequately considered or addressed in pre-pandemic disaster planning, particularly in the areas of staff movements between care homes and the length of time that social isolation and restriction measures would need to be in place. Future pandemic planning should consider the nature of the workforce model in the care home sector, and factor in strategies to better support the mobile and highly casualised workforce.

18.
Children (Basel) ; 8(5)2021 May 19.
Article in English | MEDLINE | ID: covidwho-1234674

ABSTRACT

School closures during pandemics raise important concerns for children and adolescents. Our aim is synthesizing available data on the impact of school closure during the coronavirus disease 2019 (COVID-19) pandemic on child and adolescent health globally. We conducted a rapid systematic review by searching PubMed, Embase, and Google Scholar for any study published between January and September 2020. We included a total of ten primary studies. COVID-19-related school closure was associated with a significant decline in the number of hospital admissions and pediatric emergency department visits. However, a number of children and adolescents lost access to school-based healthcare services, special services for children with disabilities, and nutrition programs. A greater risk of widening educational disparities due to lack of support and resources for remote learning were also reported among poorer families and children with disabilities. School closure also contributed to increased anxiety and loneliness in young people and child stress, sadness, frustration, indiscipline, and hyperactivity. The longer the duration of school closure and reduction of daily physical activity, the higher was the predicted increase of Body Mass Index and childhood obesity prevalence. There is a need to identify children and adolescents at higher risk of learning and mental health impairments and support them during school closures.

19.
Disabil Health J ; 14(4): 101117, 2021 10.
Article in English | MEDLINE | ID: covidwho-1233405

ABSTRACT

BACKGROUND: People with intellectual and developmental disabilities (PWIDD) are contracting and dying of COVID-19 at significantly greater rates than nondisabled people and people with other disabilities. Despite the increased risk of COVID-19 for the IDD community, there has been less attention drawn to the impact of the pandemic on people with IDD, especially beyond their health and safety. Yet, PWIDD also face unique challenges as a result of the pandemic compared to other populations. OBJECTIVE: The purpose of this study was to explore the impact of the COVID-19 pandemic on the quality of life outcomes of PWIDD. METHODS: We conducted a secondary analysis of Personal Outcome Measures® interviews from 2019 to 2020 (n = 2284). RESULTS: There were significant differences in the following quality of life outcomes of PWIDD between 2019 and 2020: continuity and security; interact with other members of the community; participate in the life of the community; intimate relationships; and, choose goals. CONCLUSIONS: Our findings suggest the COVID-19 pandemic has negatively hindered the quality of life outcomes of PWIDD in a number of different areas. While the pandemic has been undoubtably hard on the IDD community, in many ways it has simply intensified an underfunded and fractured IDD service system. However the IDD service system evolves during and after the pandemic, it must be done in a way that prioritizes the quality of life of PWIDD and what is most important to them.


Subject(s)
COVID-19 , Disabled Persons , Intellectual Disability , Child , Developmental Disabilities/epidemiology , Humans , Intellectual Disability/epidemiology , Pandemics , Quality of Life , SARS-CoV-2
20.
Sex Transm Infect ; 97(4): 276-281, 2021 06.
Article in English | MEDLINE | ID: covidwho-1232365

ABSTRACT

OBJECTIVES: 1.5 million people in the UK have mild to moderate learning disabilities. STIs and bloodborne viruses (BBVs) are over-represented in people experiencing broader health inequalities, which include those with mild learning disabilities. Self-managed care, including self-sampling for STIs/BBVs, is increasingly commonplace, requiring agency and health literacy. To inform the development of a partner notification trial, we explored barriers and facilitators to correct use of an STI/BBV self-sampling pack among people with mild learning disabilities. METHODS: Using purposive and convenience sampling we conducted four interviews and five gender-specific focus groups with 25 people (13 women, 12 men) with mild learning disabilities (July-August 2018) in Scotland. We balanced deductive and inductive thematic analyses of audio transcripts to explore issues associated with barriers and facilitators to correct use of the pack. RESULTS: All participants found at least one element of the pack challenging or impossible, but welcomed the opportunity to undertake sexual health screening without attending a clinic and welcomed the inclusion of condoms. Reported barriers to correct use included perceived overly complex STI/BBV information and instructions, feeling overwhelmed and the manual dexterity required for blood sampling. Many women struggled interpreting anatomical diagrams depicting vulvovaginal self-swabbing. Facilitators included pre-existing STI/BBV knowledge, familiarity with self-management, good social support and knowing that the service afforded privacy. CONCLUSION: In the first study to explore the usability of self-sampling packs for STI/BBV in people with learning disabilities, participants found it challenging to use the pack. Limiting information to the minimum required to inform decision-making, 'easy read' formats, simple language, large font sizes and simpler diagrams could improve acceptability. However, some people will remain unable to engage with self-sampling at all. To avoid widening health inequalities, face-to-face options should continue to be provided for those unable or unwilling to engage with self-managed care.


Subject(s)
Blood-Borne Infections/diagnosis , Disabled Persons/psychology , Learning Disabilities/psychology , Reagent Kits, Diagnostic/standards , Sexually Transmitted Diseases/diagnosis , Adult , Female , Health Literacy , Humans , Male , Middle Aged , Qualitative Research , Scotland/epidemiology , Self Care , Specimen Handling
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