Lauren Jodi Van Scoy1,2,3, Michael J Green4,5, Pamela D Witt4, Cindy Bramble6, Christopher Richardson6, Irene Putzig6, Olubukola Toyobo7, Emily Wasserman8, Vernon M Chinchilli8, Amy Tucci6, Benjamin H Levi5,9. 1. Department of Medicine, Penn State College of Medicine, Hershey, PA, USA. lvanscoy@pennstatehealth.psu.edu. 2. Department of Humanities, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA. lvanscoy@pennstatehealth.psu.edu. 3. Department of Public Health Sciences, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA. lvanscoy@pennstatehealth.psu.edu. 4. Department of Medicine, Penn State College of Medicine, Hershey, PA, USA. 5. Department of Humanities, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA. 6. Hospice Foundation of America, Washington, DC, USA. 7. Penn State College of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA. 8. Department of Public Health Sciences, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA. 9. Department of Pediatrics, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA.
Abstract
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 ).
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 ).
Entities:
Keywords:
End-of-life care; Health disparities; Underserved communities; advance care planning
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