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Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research

Many research studies focus on recruitment from one or few HIV clinics or internet-engaged populations, but this may result in inequitable representation of people with HIV (PWH), across the rural/urban/suburban continuum. Ryan White Case Managers (RWCM) meet regularly with PWH, potentially position...

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Autores principales: Lockhart, Elizabeth, Turner, DeAnne, Galea, Jerome T., Marhefka, Stephanie L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9581377/
https://www.ncbi.nlm.nih.gov/pubmed/36260624
http://dx.doi.org/10.1371/journal.pone.0276057
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author Lockhart, Elizabeth
Turner, DeAnne
Galea, Jerome T.
Marhefka, Stephanie L.
author_facet Lockhart, Elizabeth
Turner, DeAnne
Galea, Jerome T.
Marhefka, Stephanie L.
author_sort Lockhart, Elizabeth
collection PubMed
description Many research studies focus on recruitment from one or few HIV clinics or internet-engaged populations, but this may result in inequitable representation of people with HIV (PWH), across the rural/urban/suburban continuum. Ryan White Case Managers (RWCM) meet regularly with PWH, potentially positioning them as partners in gathering research-related data from diverse groups of low-income, marginalized, PWH. Yet, data collection in partnership with RWCM, particularly over large geographic areas, has been under-explored. We partnered with RWCM and their organizations throughout Florida to administer a 10-item technology use and willingness survey to clients living with HIV; RWCMs provided process-oriented feedback. Among 382 approached RWCM, 71% completed human subjects and survey administration training; 48% gathered data on 10 predetermined survey administration days; and 68% administered at least one survey during the entire period for survey administration. Altogether, 1,268 client surveys were completed, 2.7% by rural participants. Stigma, privacy concerns, and disinterest reportedly inhibited client participation; competing obligations, policies, and narrow recruitment windows prevented some RWCM from offering the survey to clients. Research should further explore strategies and best practices to ensure equitable access to participate in research among PWH.
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spelling pubmed-95813772022-10-20 Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research Lockhart, Elizabeth Turner, DeAnne Galea, Jerome T. Marhefka, Stephanie L. PLoS One Research Article Many research studies focus on recruitment from one or few HIV clinics or internet-engaged populations, but this may result in inequitable representation of people with HIV (PWH), across the rural/urban/suburban continuum. Ryan White Case Managers (RWCM) meet regularly with PWH, potentially positioning them as partners in gathering research-related data from diverse groups of low-income, marginalized, PWH. Yet, data collection in partnership with RWCM, particularly over large geographic areas, has been under-explored. We partnered with RWCM and their organizations throughout Florida to administer a 10-item technology use and willingness survey to clients living with HIV; RWCMs provided process-oriented feedback. Among 382 approached RWCM, 71% completed human subjects and survey administration training; 48% gathered data on 10 predetermined survey administration days; and 68% administered at least one survey during the entire period for survey administration. Altogether, 1,268 client surveys were completed, 2.7% by rural participants. Stigma, privacy concerns, and disinterest reportedly inhibited client participation; competing obligations, policies, and narrow recruitment windows prevented some RWCM from offering the survey to clients. Research should further explore strategies and best practices to ensure equitable access to participate in research among PWH. Public Library of Science 2022-10-19 /pmc/articles/PMC9581377/ /pubmed/36260624 http://dx.doi.org/10.1371/journal.pone.0276057 Text en © 2022 Lockhart et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Lockhart, Elizabeth
Turner, DeAnne
Galea, Jerome T.
Marhefka, Stephanie L.
Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research
title Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research
title_full Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research
title_fullStr Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research
title_full_unstemmed Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research
title_short Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research
title_sort considerations for partnering with ryan white case managers to create equitable opportunities for people with hiv to participate in research
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9581377/
https://www.ncbi.nlm.nih.gov/pubmed/36260624
http://dx.doi.org/10.1371/journal.pone.0276057
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