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“We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community

BACKGROUND: People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes. OBJECTIVES: Assess facilitators/barriers to ACP in the San Francisco (SF) Blac...

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Autores principales: Nouri, Sarah, Quinn, Mara, Doyle, Brittney N., McKissack, Mac, Johnson, Natalya, Wertz, Molly, Tan, Charissa, Pantilat, Steven Z., Lyles, Courtney R., Ritchie, Christine S., Sudore, Rebecca L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9998020/
https://www.ncbi.nlm.nih.gov/pubmed/36894819
http://dx.doi.org/10.1007/s11606-023-08134-2
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author Nouri, Sarah
Quinn, Mara
Doyle, Brittney N.
McKissack, Mac
Johnson, Natalya
Wertz, Molly
Tan, Charissa
Pantilat, Steven Z.
Lyles, Courtney R.
Ritchie, Christine S.
Sudore, Rebecca L.
author_facet Nouri, Sarah
Quinn, Mara
Doyle, Brittney N.
McKissack, Mac
Johnson, Natalya
Wertz, Molly
Tan, Charissa
Pantilat, Steven Z.
Lyles, Courtney R.
Ritchie, Christine S.
Sudore, Rebecca L.
author_sort Nouri, Sarah
collection PubMed
description BACKGROUND: People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes. OBJECTIVES: Assess facilitators/barriers to ACP in the San Francisco (SF) Black community and co-design/implement/test community-based ACP pilot events. DESIGN: Community-based participatory research, including qualitative research, intervention development, and implementation. PARTICIPANTS: In partnership with the SF Palliative Care Workgroup (which includes health system, city, and community-based organizations), we formed an African American Advisory Committee (n = 13). We conducted 6 focus groups with Black older adults (age ≥ 55), caregivers, and community leaders (n = 29). The Advisory Committee then selected 5 community-based organizations through a widespread request for proposal. These community-based organizations designed and implemented community-based pilot events to support ACP engagement. MAIN MEASURES: Two authors analyzed recorded focus group transcripts using thematic analysis. We assessed pre- vs post-event readiness to engage in ACP (validated ACP Engagement Survey; 1–4 scale, 4 = most ready) using Wilcoxon signed rank tests and assessed event acceptability with open-ended questions. KEY RESULTS: Themes included the importance of ACP to the Black community (sub-themes: strengthens families; preserves dignity, particularly for sexual/gender minorities; is tied to financial planning) and facilitators for increasing ACP engagement (sub-themes: culturally relevant materials; events in trusted community spaces including Black-owned businesses). A total of 114 participants attended 5 events; 74% identified as Black, and 16% as sexual/gender minorities. Readiness to engage in ACP was similar pre- vs post-events; 98% would recommend the events to others. CONCLUSIONS: Community-based ACP events designed and led by and for the Black community are highly acceptable. Novel insights underscored the importance of financial planning as part of ACP and the role of Black-owned businesses as trusted spaces for ACP-related discussions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11606-023-08134-2.
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spelling pubmed-99980202023-03-10 “We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community Nouri, Sarah Quinn, Mara Doyle, Brittney N. McKissack, Mac Johnson, Natalya Wertz, Molly Tan, Charissa Pantilat, Steven Z. Lyles, Courtney R. Ritchie, Christine S. Sudore, Rebecca L. J Gen Intern Med Original Research BACKGROUND: People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes. OBJECTIVES: Assess facilitators/barriers to ACP in the San Francisco (SF) Black community and co-design/implement/test community-based ACP pilot events. DESIGN: Community-based participatory research, including qualitative research, intervention development, and implementation. PARTICIPANTS: In partnership with the SF Palliative Care Workgroup (which includes health system, city, and community-based organizations), we formed an African American Advisory Committee (n = 13). We conducted 6 focus groups with Black older adults (age ≥ 55), caregivers, and community leaders (n = 29). The Advisory Committee then selected 5 community-based organizations through a widespread request for proposal. These community-based organizations designed and implemented community-based pilot events to support ACP engagement. MAIN MEASURES: Two authors analyzed recorded focus group transcripts using thematic analysis. We assessed pre- vs post-event readiness to engage in ACP (validated ACP Engagement Survey; 1–4 scale, 4 = most ready) using Wilcoxon signed rank tests and assessed event acceptability with open-ended questions. KEY RESULTS: Themes included the importance of ACP to the Black community (sub-themes: strengthens families; preserves dignity, particularly for sexual/gender minorities; is tied to financial planning) and facilitators for increasing ACP engagement (sub-themes: culturally relevant materials; events in trusted community spaces including Black-owned businesses). A total of 114 participants attended 5 events; 74% identified as Black, and 16% as sexual/gender minorities. Readiness to engage in ACP was similar pre- vs post-events; 98% would recommend the events to others. CONCLUSIONS: Community-based ACP events designed and led by and for the Black community are highly acceptable. Novel insights underscored the importance of financial planning as part of ACP and the role of Black-owned businesses as trusted spaces for ACP-related discussions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11606-023-08134-2. Springer International Publishing 2023-03-09 2023-08 /pmc/articles/PMC9998020/ /pubmed/36894819 http://dx.doi.org/10.1007/s11606-023-08134-2 Text en © The Author(s), under exclusive licence to Society of General Internal Medicine 2023. Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
spellingShingle Original Research
Nouri, Sarah
Quinn, Mara
Doyle, Brittney N.
McKissack, Mac
Johnson, Natalya
Wertz, Molly
Tan, Charissa
Pantilat, Steven Z.
Lyles, Courtney R.
Ritchie, Christine S.
Sudore, Rebecca L.
“We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community
title “We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community
title_full “We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community
title_fullStr “We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community
title_full_unstemmed “We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community
title_short “We’ve Got to Bring Information to Where People Are Comfortable”: Community-Based Advance Care Planning with the Black Community
title_sort “we’ve got to bring information to where people are comfortable”: community-based advance care planning with the black community
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9998020/
https://www.ncbi.nlm.nih.gov/pubmed/36894819
http://dx.doi.org/10.1007/s11606-023-08134-2
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