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Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.
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BACKGROUND AND AIMS: Screening and assessment of cognitive changes in adults with Intellectual Disabilities (ID), mainly Down Syndrome (DS), is crucial to offer appropriate services to their needs. We present a systematic review of the existing instruments assessing dementia, aiming to support researchers and clinicians' best practice. METHODS: Searches were carried out in the databases Web of Science; PubMed; PsycINFO in March 2019 and updated in October 2020. Studies were selected and examined if they: (1) focused on assessing age-related cognitive changes in persons with ID; (2) included adults and/or older adults; (3) included scales and batteries for cognitive assessment. RESULTS: Forty-eight cross-sectional studies and twenty-seven longitudinal studies were selected representing a total sample of 6451 participants (4650 DS and 1801 with other ID). In those studies, we found 39 scales, questionnaires, and inventories, and 13 batteries for assessing cognitive and behavioural changes in adults with DS and other ID. CONCLUSION: The most used instrument completed by an informant or carer was the Dementia Questionnaire for Learning Disabilities (DLD), and its previous versions. We discuss the strengths and limitations of the instruments and outline recommendations for future use.
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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 worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.
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BACKGROUND: Depression is a leading cause of ill-health and disability globally and encouraging help-seeking and treatment engagement is a key priority of health authorities worldwide. Causal attributions for mental illness have numerous attitudinal and behavioural consequences; however, limited research has explored their implications for attitudes to treatment. This study experimentally investigates the impact of causal attributions for depression on attitudes to specific help-seeking and treatment options. METHODS: In an online study, 196 participants read a vignette that emphasised either biological, social or biopsychosocial causes of a character's depression. Participants rated several help-seeking and treatment options on how helpful or harmful they would be for the individual described in the vignette and for themselves personally. RESULTS: The causal attribution manipulation significantly affected treatment attitudes. Relative to social attributions, emphasising biological causes of depression significantly decreased the perceived helpfulness of lifestyle-based treatments, but did not affect attitudes to psychotherapeutic or medical treatment options. Participants rated most help-seeking and treatment options as less helpful for themselves compared to the vignette character. Participants with personal experience of depression had lower confidence in informal sources of help-seeking and greater confidence in medical treatment. LIMITATIONS: Limitations include reliance on self-report measures and low reliability of certain sub-scales. CONCLUSIONS: These findings suggest emphasising the biological underpinnings of depression could deter people from engaging with lifestyle-based treatment options. Promoting biopsychosocial theories of depression could increase awareness about the multifactorial causes of depression without negatively impacting the perceived efficacy of any help-seeking or intervention options.
