COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers (original) (raw)
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HRB Open Research
Background: This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwi...
HRB Open Research
Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwi...
International Journal of Environmental Research and Public Health
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 ...
Annals of Medicine
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 places 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.
The Impact of COVID-19 Pandemic on People with Intellectual Disabilities: A Literature Review
Journal of Asian Social Science Research
The ongoing coronavirus disease 2019 (COVID-19) pandemic has affected the global population, especially the vulnerable groups such as children, the elderly, indigenous people, and people with disabilities. Restriction and limited access to education, health, and public services due to measures taken to cope with the pandemic have made life even more difficult for people with disabilities, particularly those with intellectual ones. People with intellectual disabilities were not counted as a high-risk population, thus being excluded in most public health measurements that are done to encounter the pandemic. Several investigations have been conducted to explore the impacts of the COVID-19 pandemic on children, women, and the elderly, yet very few discussed how pandemics affected people with intellectual disabilities. This article is a review of existing literature using Medical Subject Headings (MeSH) keywords like “COVID-19” and “intellectual disabilities” which was conducted in Pubme...
British Journal of Psychiatry Open, 2022
Background People living with intellectual and developmental disabilities (IDD) have suffered disproportionately in health outcomes and general well-being during the COVID-19 pandemic. There is emerging evidence of increased psychological distress. Increased strain has also fallen on clinicians managing the psychological needs of people with IDD, in the context of learning new technologies, staff shortages, reduced services and paused training opportunities. Aims To examine clinicians' experiences of patient care, clinical management and the impact of care delivery. Method A mixed fixed-response and free-text survey comprising 28 questions covering four areas (responder demographics, clinical practice, changes to local services and clinician experiences) was developed, using the STROBE guidance. It was disseminated through an exponential snowballing technique to clinicians in seven high-income countries. Quantitative data were analysed and presented with Microsoft Excel. Qualitative data were coded and thematically analysed, and presented with in-text quotations. Results There were 139 respondents, mostly senior physicians (71%). Two-thirds reported over 10 years working in the field. Quantitative findings include increased clinician stress (77%), referrals (53%), patient distress presentations (>70%), patient isolation (73%) and carer burden (89%), and reduced patient participation in daily activities (86%). A third reported increased psychotropic prescribing. Qualitative analysis outlined changes to clinical practice, particularly the emergence and impact of telehealth. Conclusions In the countries surveyed, the pandemic has not only had a significant impact on people with IDD, but also their carers and clinicians. A proactive, holistic international response is needed in preparedness for future public health emergencies.
Management and support of individuals with developmental disabilities during the COVID-19 pandemic
Research in Developmental Disabilities, 2022
COVID-19 pandemic developmental disabilities neurodevelopmental disorders genetic disorders treatment online assessment online treatment distance support online intervention developmental disability Starting in late 2019 in China and expanding all over the world since early 2020, the COVID-19 pandemic has swept across the world, changing the daily routines of many people. Families' day-today routines have been disrupted, and this is even more true for households with one or more individuals with developmental disabilities. This disruption of daily routines may be especially challenging to cope with, as caregivers have to deal with both intensive caregiving needs and a disrupted work routine. In an attempt to curb the spread of the novel coronavirus, many services and businesses were suspended, or transited to online work to prevent unnecessary human movement. Unfortunately, that also implies that many individuals with developmental disabilities no longer have physical access to their specialized healthcare or therapy centers, resulting in delayed or less effective treatment. Therefore, this special issue includes a collection of empirical studies, review and perspective papers which focused on how the pandemic has changed the current efforts, or necessitated the development of new assessment and intervention methods for individuals with developmental disabilities (i.e., any of the chronic developmental conditions characterized in DSM-5). These papers involve the study of new therapeutic arrangements as well as new technologies, and how they have transformed assessments and interventions in the context of developmental disabilities during the time of a public health crisis. We also collated articles that examined the impact of COVID-19 and discussed potential solutions and implications for future emergencies on closely related areas such as mental health, education and surrounding families of children with developmental disabilities. The articles of this special issue are grouped in three main parts: (i) management of the situation; (ii) impact of the pandemic on the person with intellectual and/or developmental disabilities, (iii) impact of the pandemic on caregivers and families. The initial article of the special issue is an opinion article written by Luckasson and Schalock (2020). The article emphasizes the importance of balanced decision-making to avoid taking unnecessary risks that may endanger the lives and wellbeing of individuals with intellectual and developmental disabilities. The challenging crisis during the pandemic have disproportionately placed individuals at heightened risk levels of negative societal reactions and physical, and psychological health. Therefore, the authors suggested greater vigilance in professional responsibility by taking a more balanced and holistic approach to ensure accountability and Contents lists available at ScienceDirect Research in Developmental Disabilities
Journal of Policy and Practice in Intellectual Disabilities, 2021
Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.
Journal of Policy and Practice in Intellectual Disabilities, 2021
Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.