Timothy P Daaleman1, Catherine P Emmett, Debra Dobbs, Sharon W Williams. 1. Department of Family Medicine, Program on Aging, Disability and Long-Term Care, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7595, USA. tim_daaleman@med.unc.edu
Abstract
INTRODUCTION: The process of advance care planning (ACP) is often difficult to initiate and complete in minority populations, and African Americans are less likely to participate in ACP than non-Hispanic whites. We explored the perceptions of ACP among seriously ill African-American older adults. METHOD: Qualitative semistructured interviews and editing analysis of 10 community-dwelling African-American elders in North Carolina. RESULTS: Three major themes were identified. First, participants had little to no familiarity with ACP; none reported that they participated in any substantive discussions regarding ACP. Inconsistent sources of healthcare information, in which there was little congruence in the information given and discordant of sources of information, were a second theme. Finally, participants denoted a deferred autonomy, in which they postponed involvement in future care decision-making but viewed themselves as active in their day-to-day living. CONCLUSION: Seriously ill African-American elders report both individual-level and health systems-level barriers to ACP. Efforts to improve ACP need to take into account the differences between the current, autonomy-based model of ACP within biomedicine and the values of minority older adults approaching the end of life.
INTRODUCTION: The process of advance care planning (ACP) is often difficult to initiate and complete in minority populations, and African Americans are less likely to participate in ACP than non-Hispanic whites. We explored the perceptions of ACP among seriously ill African-American older adults. METHOD: Qualitative semistructured interviews and editing analysis of 10 community-dwelling African-American elders in North Carolina. RESULTS: Three major themes were identified. First, participants had little to no familiarity with ACP; none reported that they participated in any substantive discussions regarding ACP. Inconsistent sources of healthcare information, in which there was little congruence in the information given and discordant of sources of information, were a second theme. Finally, participants denoted a deferred autonomy, in which they postponed involvement in future care decision-making but viewed themselves as active in their day-to-day living. CONCLUSION: Seriously ill African-American elders report both individual-level and health systems-level barriers to ACP. Efforts to improve ACP need to take into account the differences between the current, autonomy-based model of ACP within biomedicine and the values of minority older adults approaching the end of life.
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