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...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Public Library of Science (PLoS)
2022-01-01
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| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0276057 |
| _version_ | 1797989523087425536 |
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| author | Elizabeth Lockhart DeAnne Turner Jerome T Galea Stephanie L Marhefka |
| author_facet | Elizabeth Lockhart DeAnne Turner Jerome T Galea Stephanie L Marhefka |
| author_sort | Elizabeth Lockhart |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-04-11T08:21:42Z |
| format | Article |
| id | doaj.art-bfd97a61d61c4f5e903c048945c98ed8 |
| institution | Directory Open Access Journal |
| issn | 1932-6203 |
| language | English |
| last_indexed | 2024-04-11T08:21:42Z |
| publishDate | 2022-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj.art-bfd97a61d61c4f5e903c048945c98ed82022-12-22T04:34:57ZengPublic Library of Science (PLoS)PLoS ONE1932-62032022-01-011710e027605710.1371/journal.pone.0276057Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research.Elizabeth LockhartDeAnne TurnerJerome T GaleaStephanie L MarhefkaMany 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.https://doi.org/10.1371/journal.pone.0276057 |
| spellingShingle | Elizabeth Lockhart DeAnne Turner Jerome T Galea Stephanie L Marhefka Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research. PLoS ONE |
| 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 |
| url | https://doi.org/10.1371/journal.pone.0276057 |
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