PREparedness, REsponse and SySTemic transformation (PRE-RE-SyST): a model for disability-inclusive pandemic responses and systemic disparities reduction derived from a scoping review and thematic analysis.

BACKGROUND: People with disabilities (PwD) have been facing multiple health, social, and economic disparities during the COVID-19 pandemic, stemming from structural disparities experienced for long time. This paper aims to present the PREparedness, RESponse and SySTemic transformation (PRE-RE-SyST): a model for a disability-inclusive pandemic responses and systematic disparities reduction. METHODS: Scoping review with a thematic analysis was conducted on the literature published up to mid-September 2020, equating to the initial stages of the COVID-19 pandemic. Seven scientific databases and three preprint databases were searched to identify empirical or perspective papers addressing health and socio-economic disparities experienced by PwD as well as reporting actions to address them. Snowballing searches and experts' consultation were also conducted. Two independent reviewers made eligibility decisions and performed data extractions on any action or recommended action to address disparities. A thematic analysis was then used for the model construction, informed by a systems-thinking approach (i.e., the Iceberg Model). RESULTS: From 1027 unique references, 84 were included in the final analysis. The PRE-RE-SyST model articulates a four-level strategic action to: 1) Respond to prevent or reduce disability disparities during a pandemic crisis; 2) Prepare ahead for pandemic and other crises responses; 3) Design systems and policies for a structural disability-inclusiveness; and 4) Transform society's cultural assumptions about disability. 'Simple rules' and literature-based examples on how these strategies can be deployed are provided. CONCLUSION: The PRE-RE-SyST model articulates main strategies, 'simple rules' and possible means whereby public health authorities, policy-makers, and other stakeholders can address disability disparities in pandemic crises, and beyond. Beyond immediate pandemic responses, disability-inclusiveness is needed to develop everyday equity-oriented policies and practices that can transform societies towards greater resiliency, as a whole, to pandemic and other health and social emergencies.

Lockdown-Related Disparities Experienced by People with Disabilities during the First Wave of the COVID-19 Pandemic: Scoping Review with Thematic Analysis.

People with disabilities may be disproportionally affected by the COVID-19 pandemic. We synthesize the literature on broader health and social impacts on people with disabilities arising from lockdown-related measures. METHODS: Scoping review with thematic analysis. Up to mid-September 2020, seven scientific databases and three pre-print servers were searched to identify empirical or perspective papers addressing lockdown-related disparities experienced by people with disabilities. Snowballing searches and experts' consultation also occurred. Two independent reviewers took eligibility decisions and performed data extractions. RESULTS: Out of 1026 unique references, 85 addressed lockdown-related disparities experienced by people with disabilities. Ten primary and two central themes were identified: (1) Disrupted access to healthcare (other than for COVID-19); (2) Reduced physical activity leading to health and functional decline; (3) From physical distance and inactivity to social isolation and loneliness; (4) Disruption of personal assistance and community support networks; (5) Children with disabilities disproportionally affected by school closures; (6) Psychological consequences of disrupted routines, activities, and support; (7) Family and informal caregiver burden and stress; (8) Risks of maltreatment, violence, and self-harm; (9) Reduced employment and/or income exacerbating disparities; and (10) Digital divide in access to health, education, and support services. Lack of disability-inclusive response and emergency preparedness and structural, pre-pandemic disparities were the central themes. CONCLUSIONS: Lockdown-related measures to contain the COVID-19 pandemic can disproportionally affect people with disabilities with broader impact on their health and social grounds. Lack of disability-inclusive response and emergency preparedness and pre-pandemic disparities created structural disadvantages, exacerbated during the pandemic. Both structural disparities and their pandemic ramifications require the development and implementation of disability-inclusive public health and policy measures.

Usability, Usefulness, and Acceptance of a Novel, Portable Rehabilitation System (mRehab) Using Smartphone and 3D Printing Technology: Mixed Methods Study.

BACKGROUND: Smart technology use in rehabilitation is growing and can be used remotely to assist clients in self-monitoring their performance. With written home exercise programs being the commonly prescribed form of rehabilitation after discharge, mobile health technology coupled with task-oriented programs can enhance self-management of upper extremity training. In the current study, a rehabilitation system, namely mRehab, was designed that included a smartphone app and 3D-printed household items such as mug, bowl, key, and doorknob embedded with a smartphone. The app interface allowed the user to select rehabilitation activities and receive feedback on the number of activity repetitions completed, time to complete each activity, and quality of movement. OBJECTIVE: This study aimed to assess the usability, perceived usefulness, and acceptance of the mRehab system by individuals with stroke and identify the challenges experienced by them when using the system remotely in a home-based setting. METHODS: A mixed-methods approach was used with 11 individuals with chronic stroke. Following training, individuals with stroke used the mRehab system for 6 weeks at home. Each participant completed surveys and engaged in a semistructured interview. Participants' qualitative reports regarding the usability of mRehab were integrated with their survey reports and quantitative performance data. RESULTS: Of the 11 participants, 10 rated the mRehab system between the 67.5th and 97.5th percentile on the System Usability Scale, indicating their satisfaction with the usability of the system. Participants also provided high ratings of perceived usefulness (mean 5.8, SD 0.9) and perceived ease of use (mean 5.3, SD 1.5) on a 7-point scale based on the Technology Acceptance Model. Common themes reported by participants showed a positive response to mRehab with some suggestions for improvements. Participants reported an interest in activities they perceived to be adequately challenging. Some participants indicated a need for customizing the feedback to be more interpretable. Overall, most participants indicated that they would like to continue using the mRehab system at home. CONCLUSIONS: Assessing usability in the lived environment over a prolonged duration of time is essential to identify the match between the system and users' needs and preferences. While mRehab was well accepted, further customization is desired for a better fit with the end users. TRIAL REGISTRATION: ClinicalTrials.gov NCT04363944; https://clinicaltrials.gov/ct2/show/NCT04363944.

People with Disabilities and Other Forms of Vulnerability to the COVID-19 Pandemic: Study Protocol for a Scoping Review and Thematic Analysis.

OBJECTIVES: To develop a protocol for a scoping review mapping as well as thematically analyzing the literature on the effect of, and responses to, the coronavirus disease 2019 (COVID-19) pandemic, focused on people with disabilities with other layers of individual vulnerability or social disadvantage. METHODS: We will search scientific databases (Medline/PubMed, Web of Science, Scopus, AgeLine, PsycINFO, CINAHL, ERIC) and preprint servers (MedRxiv, SocArXiv, PsyArXiv). Google searches, snowballing, and key-informant strategies were also used, including a focus on the gray literature (eg, official reports). Peer-reviewed and preprint publications will be covered in 6 languages, and the gray literature in English. Publications will be included if they address individuals with disabilities; the COVID-19 pandemic or subsequent socioeconomic or occupational effects; and individual or social vulnerabilities, including any form of discrimination, marginalization, or social disadvantage. Two independent reviewers will perform eligibility decisions and key data extractions. Beyond mapping the literature, the results will thematically analyze any disproportionate risks people with disabilities and other forms of vulnerability experience in terms of being infected by COVID-19, having severe health consequences, and facing negative socioeconomic effects. Actions taken or recommended to reduce identified inequalities will also be synthesized. Our entire research team, with diverse backgrounds, will be involved in the synthesis. CONCLUSIONS: This review, which we plan to expedite, aims to inform policy makers, health authorities, disability advocates, and other stakeholders regarding the needs and ways to promote equity and disability-inclusive responses to the COVID-19 pandemic and the resultant socioeconomic shockwaves.