TY - JOUR
T1 - Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans
T2 - a National, Mixed Methods Cohort Study
AU - Van Scoy, Lauren Jodi
AU - Green, Michael J.
AU - Witt, Pamela D.
AU - Bramble, Cindy
AU - Richardson, Christopher
AU - Putzig, Irene
AU - Toyobo, Olubukola
AU - Wasserman, Emily
AU - Chinchilli, Vernon M.
AU - Tucci, Amy
AU - Levi, Benjamin H.
N1 - Funding Information:
Research reported in this project was funded by the John and Wauna Harman Foundation. Dr. Van Scoy has received funding from the National Institute of Health, Canadian Institute of Health Research, Society for Critical Care Medicine, the Francis Family Foundation, and Association for Clinical Pastoral Education. Dr. Levi has received funding from the National Institute of Health and Children’s Miracle Network. Dr. Green has received funding from the National Institute of Health. Dr. Chinchilli has received funding from the National Institute of Health and Patient Centered Outcomes Research Institute. Some authors may have additional funding sources unrelated to the subject matter of this manuscript and is available upon request. The REDCap database used in this project was funded by The Penn State Clinical & Translational Research Institute, Pennsylvania State University CTSA, NIH/NCATS Grant Number UL1 TR000127 and UL1 TR002014. Acknowledgments
Funding Information:
The authors would like to thank all the host organizations who participated in the Hello Project nationwide. The authors would like to acknowledge the following individuals for assistance with data collection, entry and management: Katherine Callahan, Kayla Confer, Lindsey Currin, James Harness, Margaret Hopkins, Meghan Lee, Anna R. Levi, Yining Ma, Sara Marlin, Nicole Matluck, Timothy Sheehan, and Xingran Wren. We would also like to acknowledge the Hello Project Advisory Board. We thank Dr. Andrew Foy for critical review of the manuscript and we thank Common Practice, LLC for permission to use their game Hello.
Publisher Copyright:
© 2020, Society of General Internal Medicine.
PY - 2021/3
Y1 - 2021/3
N2 - Background: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care. Objective: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game. Design: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA. Participants: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141). Intervention: An end-of-life conversation game, played in groups of 4–6. Main Measures: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention. Key Results: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP. Conclusions: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism. Trial Registration: This study has been registered at clinicaltrials.gov (NCT03456921)
AB - Background: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care. Objective: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game. Design: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA. Participants: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141). Intervention: An end-of-life conversation game, played in groups of 4–6. Main Measures: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention. Key Results: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP. Conclusions: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism. Trial Registration: This study has been registered at clinicaltrials.gov (NCT03456921)
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U2 - 10.1007/s11606-020-06224-z
DO - 10.1007/s11606-020-06224-z
M3 - Article
C2 - 32948953
AN - SCOPUS:85091169673
VL - 36
SP - 705
EP - 712
JO - Journal of General Internal Medicine
JF - Journal of General Internal Medicine
SN - 0884-8734
IS - 3
ER -