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.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
Tax calculation will be finalised during checkout.
Centers for Disease Control and Prevention [CDC]. HIV in the United States: the Stages of Care. 2012. http://www.cdc.gov/nchhstp/newsroom/docs/2012/Stages-of-CareFactSheet-508.pdf. Accessed 24 November 2016.
Havlik RJ, Brennan M, Karpiak SE. Comorbidities and depression in older adults with HIV. Sex Health. 2011;8:551–9.
Beck A, Brown J, Boles M, Barrett M. Completion of advance directives by older health maintenance organization members: the role of attitudes and beliefs regarding life-sustaining treatment. J Am Geriatr Soc. 2002;50(2):300–6.
de Caprariis PJ, Carballo-Dieguez A, Thompson S, et al. Advance directives and HIV: a current trend in the Inner City. J Community Health. 2012;38(3):409–13.
National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. Second Edition ed. Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2009. http://www.nationalconsensusproject.org/guideline.pdf. Accessed 20 November 2016.
Brooks JT, Buchacz K, Gebo KA, et al. HIV infection and older Americans: the public health perspective. Am J Public Health. 2012;102(8):1516–26.
Pathai S, Bajillan H, Landay AL, et al. Is HIV a model of accelerated or accentuated aging? J Gerontol A Biol Sci Medi Sci. 2014;69(70):833–42.
Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005;45:634–41.
Gerst K, Burr JA. Planning for end-of-life care: black-white differences in the completion of advance directives. Res Aging. 2008;30(4):428–49.
Johnson JS, Kuchibhatla M, Tulsky JA. What explains differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):1953–8.
Krug R, Karus D, Selwyn PA, et al. Late-stage HV/AIDS patients’ and their familial caregivers agreement on the palliative care outcomes scale. J Pain Symptom Manag. 2010;39:23–32.
Sanders JJ, Robinson MT, Block SD. Factors impacting advance care planning among African Americans: results of a systematic integrated review. J Palliat Med. 2016;19(2):202–27.
Jeong S, Ohr S, Pich J, et al. ‘Planning ahead’ among community-dwelling older people from culturally and linguistically diverse background: a cross-sectional survey. J Clin Nurs. 2015;24(1–2):244–55.
Farber EW, Marconi VC. Palliative HIV care: opportunities for biomedical and behavioral change. Curr HIV/AIDS Report. 2014;11(4):404–12.
Keen L, Khan M, Clifford L, et al. Injection and non-injection drug use and infectious disease in Baltimore City: differences by race. Addict Behav. 2014;39(9):1325–8.
Barocas JA, Erlandson KM, Belzer BK, et al. Advance directives among people living with HIV: room for improvement. AIDS Care. 2015;27(3):370–7.
Knowlton AR. Informal HIV caregiving in a vulnerable population: toward a network resource framework. Soc Sci Med. 2003;56:1307–20.
Knowlton AR, Yang C, Bohnert A, et al. Main partner factors associated with worse adherence to HAART among women in Baltimore, Maryland: a preliminary study. AIDS Care. 2011;23(9):1102–10.
Uchino BN. Social support and physical health: understanding the health consequences of relationships. 1st ed. New Haven, CT: Yale University Press; 2004.
Robles TF, Kiecolt-Glaser JK. The physiology of marriage: pathways to health. Physiol Behav. 2003;79(3):409–16.
Galvan FH, Davis EM, Banks D, et al. HIV stigma and social support among African Americans. AIDS Patient Care STDs. 2008 May;22(5):423–36.
Nichols JE, Speer DC, Watson BJ, et al. Aging with HIV: psychological, social, and health issues. 1st ed. San Diego, CA: Academic Press; 2002.
Doull M, O’Connor A, Jacobsen MJ, et al. Investigating the decision-making needs of HIV-positive women in Africa using the Ottawa decision-support framework: knowledge gaps and opportunities for intervention. Patient Educ Couns. 2006;63(3):279–91.
Pickard JG, Inoue M, Chadiha LA, et al. The relationship of social support to African American Caregivers’ help-seeking for emotional problems. Soc Serv Rev. 2011;85(2):246–65.
Dalmida SG, Holstad MM, Dilorio C, et al. The meaning and use of spirituality among African American women living with HIV/AIDS. West J Nurs Res. 2012;34(6):736–65.
Muturi N, An S. HIV/AIDS stigma and religiosity among African American women. J Health Comm. 2010;15(4):388–401.
Mosack KE, Wandrey RL. Discordance in HIV-positive patient and healthcare provider perspectives on death, dying, and end-of-life care. Am J Hosp Palliat Care. 2015;32(2):161–7.
Martin CA. Promoting advance directives and ethical wills with the HIV-aging cohort by first assessing clinician knowledge and comfort level. J Assoc Nurs AIDS Care. 2015;26(2):208–14.
Lamas D, Rosenbaum L. Freedom from the tyranny of choice: teaching the end-of-life conversation. New Eng J Med. 2012;366:1655–7.
Zaide GB, Pekmezaris R, Nouryan CN, et al. Ethnicity, race, and advance directives in an inpatient palliative care consultation service. Palliat Support Care. 2013;11(1):5–11.
Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. 1st ed. Thousand Oaks, CA: Sage Publications; 2007.
Maryland MOLST. Medical orders for life-sustaining treatment—Maryland MOLST Order Form. http://marylandmolst.org/pages/molst_form.htm. Accessed 21 November 2016.
Nova Research Company. Questionnaire development system computer software. Bethesda, MD: Nova Research Company; 2006.
McDowell I, Newell C. Measuring health. 2nd ed. Oxford: New York, NY; 1996.
Hagell P, Westergren A. Measurement properties of the SF-12 health survey in Parkinson’s Disease. J Parkinsons Dis. 2011;1:185–96.
Fong Y. R Statistical Software—Chngpt package for change point logistic regression. http://www.cran.rproject.org/web/packages/chngpt/chngpt.pdf. Accessed 20 November 2016.
Reinhard SC. Living with mental illness: effects of professional support and personal control on caregiver burden. ResNursHealth. 1994;17(2):79–88.
Newsom JT, Nishishiba M, Morgan DL, et al. The relative importance of three domains of positive and negative social exchanges: a longitudinal model with comparable measures. Psychol Aging. 2003;18:746–54.
Pearlin LI, Mullan JT, Aneshensel CS, et al. The structure and functions of AIDS caregiving relationships. Psychosocial Rehabil J. 1994;17:51–67.
Pearlin LI, Aneshensel CS, LeBlanc AJ. The forms and mechanisms of stress proliferation: the case of AIDS caregivers. J Health Soc Behav. 1997;38(3):223–36.
Pearlin L, Schooler C. The structure of coping. J Health Soc Behav. 1978;19:2–21.
Emanuel LL, et al. Advance directives for medical care: a case for greater use. New Eng J Med. 1991;324:889–95.
Pearlman RA, Starks H, Cain KC, et al. Improvements in advance care planning in the veterans affairs system: results of a multifaceted intervention. Arch Intern Med. 2005;165(6):667–74.
Straw G, Cummins R. AARP North Carolina end of life care survey. Washington, DC: Knowledge Management; 2003.
Shapiro MF, Morton SC, McCaffrey DF, et al. Variations in the care of HIV-infected adults in the United States: results from the HIV cost and services utilization study. JAMA. 1999;281(24):2305–15.
Sasson C, Forman J, Krass D, et al. A qualitative study to understand barriers to implementation of national guidelines for prehospital termination of unsuccessful resuscitation efforts. Prehosp Emerg Care. 2010;14:250–8.
Glaser BG, Strauss AL. The discovery of grounded theory: strategies for qualitative research. New York, NY: Aldine De Gruyter; 1967.
Software S. Atlas.Ti qualitative data analysis and research software for windows, version 7.0. Berlin, DE: Scientific Software; 2012.
Gordon RA. Applied statistics for the social and health sciences. 1st ed. New York, NY: Routledge Books; 2012.
Long JS. Regression models for categorical and limited dependent variables – advanced quantitative techniques in the social sciences. 1st ed. Thousand Oaks, CA: Sage Publications; 1997.
Dean C, Lawless JF. Tests for detecting overdispersion in Poisson regression models. J Am Stat Assoc. 1989;84(406):467–72.
Hosmer DW, Lemeshow S. Applied logistic regression. 2nd ed. Hoboken, NJ: Wiley; 2005.
Bennett DA. How can I deal with missing data in my study? Austr New Zeal J Public Health. 2001;25:464–9.
StataCorp. STATA Statistical Software for Windows, Release 14.0. College Station, TX: StataCorp LP; 2015.
Sangarlangkarn A, Merlin JS, Tucker RO, Kelley AS. Advanced care planning and HIV infection in the era of antiretroviral therapy: a review. Advanced Care Planning HIV. 2015;23(5):174–80.
Emanuel LL, von Gunten CF, Ferris FD. The education for physicians on end-of-lifecare curriculum. 1999. http://www.ama-assn.org/ethic/epec/download/module_1.pdf. Accessed 24 November 2016.
Martin CA. Promoting advance directives and ethical wills with the HIV-aging cohort by first assessing clinician knowledge and comfort level. J Assoc Nurses AIDS Care. 2015;26(2):208–14.
Kimmel AL, Wang J, Scott RK, et al. FAmily CEntered (FACE) advance care planning: study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers. Contemporary Clin Trials. 2015;43:172–8.
Slomka J, Prince-Paul WA, et al. Palliative care, hospice, and advance care planning: views of people living with HIV and other chronic conditions. J Assoc Nurs AIDS Care. 2016;27(4):476–84.
Milligan ED, Mehmert KK, Hinde JL, et al. Thermal hyperalgesia and mechanical allodynia produced by intrathecal administration of the human immunodeficiency virus-1 (HIV-1) envelope glycoprotein, gp120. Brain Res. 2000;861(1):105–16.
Bouhassira D, Attal N, Willer JC, et al. Painful and painless peripheral sensory neuropathies due to HIV infection: a comparison using quantitative sensory evaluation. Pain. 1999;80(1):265–72.
Liu B, Liu X, Tang SJ. Interactions of opioids and HIV infection in the pathogenesis of chronic pain. Frontiers Microbiol. 2016;7
Aw D, Hayhoe B, Smajdor A, et al. Advance care planning and the older patient. QJM. 2012;105(3):225–30.
Bose-Brill S, Kretovics M, Ballenger T, et al. Testing of a tethered personal health record framework for early end-of-life discussions. Am J Managed Care. 2016;22(7):e258.
Huang CH, Crowther M, Allen RS, et al. A pilot feasibility intervention to increase advance care planning among African Americans in the deep south. J Palliat Med. 2016;19(2):164–73.
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).
About this article
Cite this article
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
- Advance care planning
- End-of-life care
- African Americans
- Quality of life
- Urban health
- Mixed methods