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      “The doctor will see you now”: Direct support professionals’ perspectives on supporting adults with intellectual and developmental disabilities accessing health care during COVID-19

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          Abstract

          Background

          It is critical to consider how rapid changes in health care delivery and the rise in use of virtual modalities have impacted adults with intellectual and developmental disabilities and caregivers.

          Objective

          The purpose of this paper is to describe direct support professionals’ experiences assisting adults with intellectual and developmental disabilities in accessing virtual and in-person health care during COVID-19.

          Methods

          A content analysis was conducted on responses obtained from an online questionnaire distributed to 942 direct support professionals in Canada. Descriptive statistics were used to report the type of visits that occurred and open text responses describing these visits were coded.

          Results

          Twenty four percent of direct support professionals reported supporting someone at an in-person medical appointment, 22% reported attending at least one video-based virtual appointment and 58% reported supporting at least one phone based virtual appointment in the first 5 months of the pandemic. They identified several barriers and facilitators with each type of visit which suggests there is no “single way” to provide health care to this group, but that optimal care depends on maximizing the fit between the person’s abilities, the skill set of direct support professionals and health care providers, and the presenting health care issue.

          Conclusions

          Study findings provide insight into the experience of health care for this population during COVID-19 and can be used to support direct support professionals and adults with intellectual and developmental disabilities to adapt to safe, supportive and comprehensive virtual and in-person health care during the pandemic and beyond.

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          Most cited references31

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            The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.
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              Three approaches to qualitative content analysis.

              Content analysis is a widely used qualitative research technique. Rather than being a single method, current applications of content analysis show three distinct approaches: conventional, directed, or summative. All three approaches are used to interpret meaning from the content of text data and, hence, adhere to the naturalistic paradigm. The major differences among the approaches are coding schemes, origins of codes, and threats to trustworthiness. In conventional content analysis, coding categories are derived directly from the text data. With a directed approach, analysis starts with a theory or relevant research findings as guidance for initial codes. A summative content analysis involves counting and comparisons, usually of keywords or content, followed by the interpretation of the underlying context. The authors delineate analytic procedures specific to each approach and techniques addressing trustworthiness with hypothetical examples drawn from the area of end-of-life care.
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                Author and article information

                Contributors
                Role: PhD
                Role: PhD
                Role: MA
                Role: MD
                Journal
                Disabil Health J
                Disabil Health J
                Disability and Health Journal
                Elsevier Inc.
                1936-6574
                1876-7583
                23 January 2021
                July 2021
                23 January 2021
                : 14
                : 3
                : 101066
                Affiliations
                [a ]Azrieli Adult Neurodevelopmental Centre, Campbell Family Mental Health Research Institute, Centre for Addiction and Mental Health (CAMH), Canada
                [b ]Department of Psychiatry, University of Toronto, Canada
                [c ]Institute of Health Policy Research and Evaluation, University of Toronto, Canada
                Author notes
                []Corresponding author. 1001 Queen Street West, Toronto, ON, M6J 1H4, Canada.
                Article
                S1936-6574(21)00007-8 101066
                10.1016/j.dhjo.2021.101066
                9760310
                33531290
                eae8c9ff-58a7-42cf-af9c-25fe89cdd1e8
                © 2021 Elsevier Inc. All rights reserved.

                Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.

                History
                : 26 October 2020
                : 15 January 2021
                : 19 January 2021
                Categories
                Original Article

                virtual care,health care,intellectual and developmental disabilities,covid-19,direct support professionals

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