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.
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.
Constituting ‘social problems’ in particular ways has a range of effects, including for how subjects are positioned within policy and discourse. Employing an approach grounded in poststructuralist and social constructionist thinking, this analysis interrogates how the subjects of mental health care were constituted and problematised in mental health policies in two distinctive contexts, unsettling the taken‐for granted assumptions which underpin these problematisations. Two policies were selected for analysis as exemplar pieces of mental health policy reform in Hong Kong and New South Wales (NSW). Subjects were constituted as ‘patientised’ individuals (in Hong Kong) encouraged to depend on professionals who help them reintegrate into the ‘normal’ community, and as ‘traumatised’ individuals (in NSW) expected to take responsibility to guide the delivery of mental health care and respected as a part of diversity in community settings. While both policies constituted subjects as ‘unwell individuals’ and enacted ‘dividing practices’, subjectivities were shaped by distinctive cultural and socio‐political contexts. This analysis shifts our attention away from a focus on the effectiveness of policy solutions to the heterogeneity and contingency of policy ‘problems’ and ‘subjects’, opening up new possibilities for ‘out‐of‐the‐box’ policy responses to mental health.
Information and communication technology-based health interventions for transgender people: A scoping review. PLOS Glob Public Health 2(9): e0001054.
This study explored how social workers located in Sydney and Hong Kong conceptualised client empowerment. Further, it investigated these professionals’ perceived facilitators and barriers to their empowerment practices, based on an ecological framework. A cross-sectional online survey was used, where the original Empowerment Scale for clients with mental health issues was adapted to measure conceptualisation of client empowerment from social workers’ perspectives. Eighty-three social workers serving people with mental health issues (MHIs) in Sydney and eighty in Hong Kong responded. A two-factor model was generated suggesting that practitioners tend to conceptualise client empowerment into two aspects: a relation-based dimension and a resource-oriented one. Compared with their Sydney counterparts, the Hong Kong practitioners considered resource-oriented empowerment as more integral to client empowerment (t(161) = 4.17, p < 0.001). Several key factors were found to be independently associated with endorsement of the two-factor client-empowerment model by practitioners: perceived less support from medical specialists but more support from teams serving the same client, perceived benefits of social work training and, finally, beliefs in the importance of social workers’ role in client empowerment. The study highlights the multiple dimensions of client empowerment and a wide range of inter-professional and sociostructural factors enabling social workers’ practices that support empowerment. Our paper highlights the role of professional empowerment as a stepping stone to enable their client-empowerment practices through policy support and inter-professional collaboration.
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