Have You Talked about It: Advance Care Planning among African Americans Living with HIV in Baltimore

Abstract

Advance care planning (ACP) is the process of planning for when individuals are unable to make their own healthcare decisions. Research suggests ACP is understudied among HIV-positive African Americans. We explored ACP knowledge, preferences, and practices with HIV-positive African Americans from an urban HIV-specialty clinic (AFFIRM study). Participants completed surveys and interviews. Descriptive analyses and Poisson regression were conducted on survey data. Qualitative interviews were coded using grounded theory/constant comparative method. Participants were mostly male (55.1%). Half rated their current pain as at least six out of ten (50.8%). Two-thirds had discussed ACP with providers or supporters (66.2%). Qualitative themes were: (1) impact of managing pain on quality of life and healthcare, (2) knowledge/preferences for ACP, and (3) sources of HIV supportive care and coping (N = 39). Correlates of having discussed ACP included: moderate pain intensity (p < 0.10), including supporters in health decisions (p < 0.001), religious attendance (p < 0.05), and knowledge of healthcare mandates (p < 0.01; N = 276). Findings highlight the need for patient education to document healthcare preferences and communication skills development to promote inclusion of caregivers in decision-making.

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Acknowledgments

This study was supported by grants from the National Institutes of Health (R01 DA019413 and R34 DA034314). This research was also supported by the Johns Hopkins Center for AIDS Research (1P30AI094189).

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Correspondence to Allysha C. Maragh-Bass.

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Maragh-Bass, A.C., Zhao, Y., Isenberg, S.R. et al. Have You Talked about It: Advance Care Planning among African Americans Living with HIV in Baltimore. J Urban Health 94, 730–745 (2017). https://doi.org/10.1007/s11524-017-0157-y

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Keywords

  • HIV/AIDS
  • Advance care planning
  • End-of-life care
  • African Americans
  • Quality of life
  • Urban health
  • Mixed methods
  • DNR