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- Linehan, Christine, et al.
(författare)
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COVID-19 IDD : A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers
- 2020
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Ingår i: HRB open research. - London : F1000 Research Ltd. - 2515-4826. ; 3
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Tidskriftsartikel (refereegranskat)abstract
- 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 worldwide for international comparison. The survey team have extensive personal and professional networks 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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| 3. |
- Linehan, Christine, et al.
(författare)
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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.
- 2022
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Ingår i: HRB open research. - : F1000 Research Ltd. - 2515-4826. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- 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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- Mitchell, Eileen, et al.
(författare)
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Neuropsychological rehabilitation interventions for people with an acquired brain injury and their caregivers. A protocol for a systematic review of economic evaluation
- 2020
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Ingår i: HRB Open Research. - : F1000 Research Ltd. - 2515-4826.
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Tidskriftsartikel (refereegranskat)abstract
- Background: New emerging evidence has demonstrated the need for effective interventions to help people living with an acquired brain injury (ABI). Evidence on cost-effectiveness, which can help inform use of limited resources, is scarce in this area and therefore the purpose of this systematic review is to critically appraise and consolidate the current evidence on economic evaluations of ABI rehabilitation interventions.Methods: Systematic review methodology will be applied to identify, select and extract data from published economic evaluation studies (trial-based, non-trial based, simulation-based, decision model and trial-based model economic evaluations) of ABI treatment interventions in adults. A systematic literature search will be conducted on the following electronic databases: EMBASE, Econlit, CINAHL, Medline, Econlit, the National Health Service Economic Evaluation Database and PsyclNFO. This review will only include cost-effectiveness analysis studies (e.g., cost per life year gained), cost-benefit and cost minimisation analyses in which the designs were randomised controlled trials (RCTs), non-RCT studies, cost-utility analyses (e.g., cost per quality-adjusted life year (QALY) gained or cost per disability-adjusted life year averted), cohort studies, and modeling studies. Only studies that were published in English, associated with adults who have an ABI will be included. There will be no restrictions on perspective, sample size, country, follow-up duration or setting. The search strategy terms will include the following: acquired brain injury, brain*; cost*; or cost–benefit analysis*. Following data extraction, a narrative summary and tables will be used to summarize the characteristics and results of included studies.Discussion: The findings from this review will be beneficial to health policy decision makers when examining the evidence of economic evaluations in this field. In addition, it is anticipated that this review will identify gaps in the current economic literature to inform future-related research.
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- O' Mahony, L, et al.
(författare)
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Impact of Long COVID on health and quality of life
- 2022
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Ingår i: HRB open research. - : F1000 Research Ltd. - 2515-4826. ; 5, s. 31-
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim of this study was to measure the impact of post-acute sequelae of COVID-19 (PASC) on quality of life, mental health, ability to work and return to baseline health in an Irish cohort. Methods: We invited individuals with symptoms of COVID-19 lasting more than 14 days to participate in an anonymous online questionnaire. Basic demographic data and self-reported symptoms were recorded. Internationally validated instruments including the patient health questionnaire somatic, anxiety and depressive symptom scales (PHQ-SADS), the Patient Health Questionnaire-15 (PHQ-15) and Chadler fatigue scale (CFQ) were used. Results: We analysed responses from 988 participants with self-reported confirmed (diagnostic/antibody positive; 81%) or suspected (diagnostic/antibody negative or untested; 9%) COVID-19. The majority of respondents were female (88%), white (98%), with a median age of 43.0 (range 15 – 88 years old) and a median BMI of 26.0 (range 16 – 60). At the time of completing this survey, 89% of respondents reported that they have not returned to their pre-COVID-19 level of health. The median number of symptoms reported was 8 (range 0 to 33 symptoms), with a median duration of 12 months (range 1 to 20 months) since time of acute infection. A high proportion of PASC patients reported that they have a moderate or severe limitation in their ability to carry out their usual activities, 38% report their ability to work is severely limited and 33% report a moderate, or higher, level of anxiety or depression. Conclusion: The results of this survey of an Irish cohort with PASC are in line with reports from other settings, and we confirm that patients with PASC reported prolonged, multi-system symptoms which can significantly impact quality of life, affect ability to work and cause significant disability. Dedicated multidisciplinary, cross specialty supports are required to improve outcomes of this patient group.
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