Development of a Conceptual Framework for Understanding Shared Decision making Among African-American LGBT Patients and their Clinicians

Journal of General Internal Medicine - Tập 31 - Trang 677-687 - 2016
Monica E. Peek1,2,3, Fanny Y. Lopez1,2, H. Sharif Williams4,5, Lucy J. Xu1, Moira C. McNulty6, M. Ellen Acree6, John A. Schneider6,7,8
1Section of General Internal Medicine, , The University of Chicago, Chicago, USA
2Chicago Center for Diabetes Translation Research, , The University of Chicago, Chicago, USA
3MacLean Center for Clinical Medical Ethics, The University of Chicago, Chicago, USA
4Center for Culture, Sexuality and Spirituality, , Goddard College, Plainfield, USA
5Undergraduate Programs, , Goddard College, Plainfield, USA
6Section of Infectious Diseases, , The University of Chicago, Chicago, USA
7Department of Public Health Sciences, University of Chicago, Chicago, USA
8Chicago Center for HIV Elimination, University of Chicago, Chicago, USA

Tóm tắt

Enhancing patient-centered care and shared decision making (SDM) has become a national priority as a means of engaging patients in their care, improving treatment adherence, and enhancing health outcomes. Relatively little is known about the healthcare experiences or shared decision making among racial/ethnic minorities who also identify as being LGBT. The purpose of this paper is to understand how race, sexual orientation and gender identity can simultaneously influence SDM among African-American LGBT persons, and to propose a model of SDM between such patients and their healthcare providers. We reviewed key constructs necessary for understanding SDM among African-American LGBT persons, which guided our systematic literature review. Eligible studies for the review included English-language studies of adults (≥ 19 y/o) in North America, with a focus on LGBT persons who were African-American/black (i.e., > 50 % of the study population) or included sub-analyses by sexual orientation/gender identity and race. We searched PubMed, CINAHL, ProQuest Dissertations & Theses, PsycINFO, and Scopus databases using MESH terms and keywords related to shared decision making, communication quality (e.g., trust, bias), African-Americans, and LGBT persons. Additional references were identified by manual reviews of peer-reviewed journals’ tables of contents and key papers’ references. We identified 2298 abstracts, three of which met the inclusion criteria. Of the included studies, one was cross-sectional and two were qualitative; one study involved transgender women (91 % minorities, 65 % of whom were African-Americans), and two involved African-American men who have sex with men (MSM). All of the studies focused on HIV infection. Sexual orientation and gender identity were patient-reported factors that negatively impacted patient/provider relationships and SDM. Engaging in SDM helped some patients overcome normative beliefs about clinical encounters. In this paper, we present a conceptual model for understanding SDM in African-American LGBT persons, wherein multiple systems of social stratification (e.g., race, gender, sexual orientation) influence patient and provider perceptions, behaviors, and shared decision making. Few studies exist that explore SDM among African-American LGBT persons, and no interventions were identified in our systematic review. Thus, we are unable to draw conclusions about the effect size of SDM among this population on health outcomes. Qualitative work suggests that race, sexual orientation and gender work collectively to enhance perceptions of discrimination and decrease SDM among African-American LGBT persons. More research is needed to obtain a comprehensive understanding of shared decision making and subsequent health outcomes among African-Americans along the entire spectrum of gender and sexual orientation.

Tài liệu tham khảo

Institute of Medicine. Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities; Board on Health of Select Populations. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: National Academies Press; 2011. http://www.iom.edu/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx. Accessed January 20, 2016. Agency for Healthcare Quality and Research (AHRQ). The SHARE Approach. Available at: http://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/index.html Accessed January 20, 2016. American College of Physicians. American College of Physicians endorses shared decision making approach for prostate cancer screening. 2013. http://www.informedmedicaldecisions.org/2013/04/09/american-college-of-physicians-endorses-shared-decision making-approach-for-prostate-cancer-screening/. Accessed January 20, 2016. American Medical Association. Getting the most for our health care dollars: Shared decision making. Available at: http://www.allhealth.org/briefingmaterials/AMASharedDecisionMaking-1936.pdf Accessed January 20, 2016. Association of American Medical Colleges. Core competencies for interprofessional collaborative practice. 2011. Available at: https://www.aamc.org/download/186750/data/core_competencies.pdf . Accessed January 20, 2016. Committee on Quality of Health Care in America, Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press; 2001. Daniel H, Butkus R. Health and Public Policy Committee of the American College of Physicians. Lesbian, Gay, Bisexual, and Transgender Health Disparities: Executive summary of a policy position paper from the American College of Physicians. Ann Intern Med. doi:10.7326/M14-2482. Published online 12 May 2015. Makadon H, Mayer K, Potter J, Goldhammer H, eds. The Fenway Guide to Lesbian, Gay, Bisexual and Transgender Health. Philadelphia, PA: American College of Physicians; 2008. Deblaere C, Brewster ME, Sarkees A, Moradi B. Conducting research with LGB people of color: Methodological challenges and strategies. Couns Psychol. 2010;38:331–62. Gayman M, Barragan J. Multiple perceived reasons for major discrimination and depression. Soc Ment Health. 2013;3:203–20. Mays VM, Cochran SD. Mental health correlates of perceived discrimination among lesbian, gay, and bisexual adults in the United States. Am J Public Health. 2001;91:1869–76. Seng JS, Lopez WD, Sperlich M, Hamama L, Reed Meldrum CD. Marginalized identities, discrimination burden, and mental health: empirical exploration of an interpersonal-level approach to modeling intersectionality. Soc Sci Med. 2012;75:2437–45. Smedley BD, Stith SY, Nelson AR, eds. Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, D.C.: National Academies Press. Institute of Medicine; 2002. Crawford I, Allison KW, Zamboni BD, Soto T. The influence of dual-identity development on the psychosocial functioning of African-American gay and bisexual men. J Sex Res. 2002;39:179–89. Malebranche DJ, Peterson JL, Fullilove RE, Stackhouse RW. Race and sexual identity: perceptions about medical culture and healthcare among Black men who have sex with men. J Natl Med Assoc. 2004;96:97–107. Charles C, Gafini A, Whelan T. Shared decision making in the medical encounter: what does it mean? (Or it takes at least two to tango). Soc Sci Med. 1997;44:681–92. Charles C, Gafni A, Whelan T. Decision making in the physician–patient encounter: revisiting the shared treatment decision making model. Soc Sci Med. 1999;49:651–61. Montori VM, Gafni M, Charles C. A shared treatment decision making approach between patients with chronic conditions and their clinicians: the case of diabetes. Health Expect. 2006;9:25–36. Peek ME, Quinn MT, Gorawara-Bhat R, Odoms-Young A, Wilson SC, Chin MH. How is Shared Decision making Defined among African-Americans with Diabetes? Patient Educ Couns. 2008;72:450–458. Schneider J, Kaplan SH, Greenfield S, Li W, Wilson IB. Better physician-patient relationships are associated with higher reported adherence to antiretroviral therapy in patients with HIV infection. J Gen Intern Med. 2004;19:1096–103. Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, Jordan J. The impact of patient-centered care on outcomes. J Fam Practice. 2000;49:796–804. Adams RJ, Smith BJ, Ruffin RE. Impact of the physician’s participatory style in asthma outcomes and patient satisfaction. Ann Allerg Asthma Im. 2001;86:263–71. Rabkin JG, Remien RH, Wilson C. Good doctors, good patients: Partners in HIV Treatment. New York: NCM Publishers; 1994. Greenfield S, Kaplan SH, Ware JE, Yano EM, Frank HJ. Patients’ participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3:448–57. Greenfield S, Kaplan SH, Ware JE. Expanding patient involvement in care: effects on patient outcomes. Ann Intern Med. 1985;102:520–8. Stewart MA. Effective physician–patient communication and health outcomes: a review. Can Med Assoc J. 1995;152:1423–33. Wallace LS, DeVoe JE, Rogers ES, Malagon-Rogers M, Fryer GE Jr. The medical dialogue: Disentangling differences between hispanic and non-hispanic whites. J Gen Intern Med. 2007;22:1538–43. Cooper-Patrick LA, Gallo JJ, Gonzales JJ, Vu HT, Powe NR, Nelson C, et al. Race, gender, and partnership in the patient-physician relationship. JAMA. 1999;282:583–9. Cooper LA, Roter DL, Johnson RL, Ford DE, Steinwachs DM, Powe NR. Patient-centered communication, ratings of care, and concordance of patient and physician race. Ann Intern Med. 2003;139:907–15. Levinson W, Hudak PL, Feldman JJ, Frankel RM, Kuby A, Bereknyei S, et al. “It’s not what you say.”: racial disparities in communication between orthopedic surgeons and patients. Med Care. 2008;46:410–6. Ratanawongsa N, Zikmund-Fisher B, Couper MP, Van Hoewyk J, Powe NR. Race, ethnicity, and shared decision making for hyperlipidemia and hypertension treatment: The DECISIONS survey. Med Decision Making. 2010;30:65S–76S. Sevelius JM, Carrico A, Johnson MO. Antiretroviral therapy adherence among transgender women living with HIV. J Assoc Nurses AIDS Care. 2010;21:256–64. Gerbert B, Maguire BT, Bleecker T, Coates TJ, McPhee SJ. Primary care physicians and AIDS: Altitudinal and structural barriers to care. JAMA. 1991;266:2837–42. van Ryn M, Fu SS. Paved With Good Intentions: Do Public Health and Human Service Providers Contribute to Racial/Ethnic Disparities in Health? Am J Public Health. 2003;93:248–55. Bird ST, Bogart LM. Perceived race-based and socioeconomic status(SES)-based discrimination in interactions with health care providers. Ethn Dis. 2001;11:554–63. Siegel K, Karus D, Schrimshaw EW. Racial differences in attitudes toward protease inhibitors among older HIV-infected men. AIDS Care. 2000;12:423–34. Kammerer N, Mason T, Connors M, Durkee R. Transgender health and social service needs in the context of HIV risk. In: Bockting W, Kirk S, eds. Transgender and HIV: Risks, prevention and care. Binghamton, NY: Haworth; 2001:39–57. Lombardi E. Public health and trans-people: Barriers to care and strategies to improve treatment. In: Meyer IH, Northridge ME, eds. The health of sexual minorities: Public health perspective on lesbian, gay, bisexual, and transgender populations. New York, NY: Springer; 2007:638–52. Sanchez NF, Sanchez JP, Danoff A. Health care utilization, barriers to care, and hormone usage among male-to-female transgender persons in New York City. Am J Public Health. 2009;99:713–9. Williams DR, Kontos EZ, Viswanath K, Haas JS, Lathan CS, MacConaill LE, Chen J, Ayanian JZ. Integrating multiple social statuses in health disparities research: the case of lung cancer. Health Serv Res. 2012;47:1255–77. Ailshire JA, House JS. The Unequal Burden of Weight Gain: An Intersectional Approach to Understanding Social Disparities in BMI Trajectories from 1986 to 2001/2002. Soc Forces. 2011;90:397–423. Erving CL. Gender and physical health: a study of African-American and Caribbean black adults. J Health Soc Behav. 2011;52:383–99. Bowleg L. When Black + Lesbian + Woman ≠ Black Lesbian Woman: The Methodological Challenges of Qualitative and Quantitative Intersectionality Research. Sex Roles. 2008;59:312–25. Purdie-Vaughns V, Eibach R. Intersectional invisibility: The distinctive advantages and disadvantages of multiple subordinate-group identities. Sex Roles. 2008;59:377–91. Jones SR, McEwen MK. A conceptual model of multiple dimensions of identity. J College Stud Dvpmt. 2000;41:405–14. Bowleg L. The problem with the phrase women and minorities: intersectionality-an important theoretical framework for public health. Am J Public Health. 2012;102:1267–73. Mossakowski KN. Coping with perceived discrimination: does ethnic identity protect mental health? J Health Soc Behav. 2003;44:318–31. Kessler RC, Mickelson KD, Williams DR. The prevalence, distribution, and mental health correlates of perceived discrimination in the United States. J Health Soc Behav. 1999;40:208–30. Klest B. Childhood Trauma, Poverty and adult victimization. Psychol Trauma. 2012;4:245–251. Microaggressions in everyday life: Race gender and sexual orientation. Hoboken (NJ): John Wiley &Sons, Inc; 2010. Grollman EA. Multiple disadvantaged statuses and health: the role of multiple forms of discrimination. J Health Soc Behav. 2014;55:3–19. Grollman EA. Multiple forms of perceived discrimination and health among adolescents and young adults. J Health Soc Behav. 2012;53:199–214. Meyer IH, Schwartz S, Frost DM. Social patterning of stress and coping: does disadvantaged social statuses confer more stress and fewer coping resources? Soc Sci Med. 2008;67:368–79. Adams CL, Kimmel DC. Exploring the lives of older African-American Gay Men. In: Green B, ed. Ethnic and cultural diversity among lesbian and gay men. Thousand Oaks (CA): Sage Publications, Inc; 1997:132–151. Greene B. Ethnic-minority lesbians and gay men: Mental health and treatment issues. J Consult Clin Psychol. 1994;62:243–51. Greene B. Ethnic-minority lesbians and gay men: Mental health and treatment issues. In: Greene B, ed. Ethnic and cultural diversity among lesbians and gay men: Psychological perpectives on lesbian and gay issues. Thousand Oaks (CA): Sage Publications, Inc; 1997:216–39. Herek GM, Capitanio J. Black heterosexuals’ attitudes towards lesbians and gay men in the United States. J Sex Res. 1995;32:95–105. Icard L. Black gay men and conflicting social identities: Sexual orientation versus racial identity. J Soc Work Hum Sex. 1986;4:83–93. Michael RT, Gagnon JH, Laumann EO, Kolata G. Sex in America: A definitive survey. Little, Brown, & Company: Boston (MA); 1994. Dubé EM, Savin-Williams RC. Sexual identity development among ethnic sexual-minority male youths. Dev Psychol. 1999;35:1389–98. Molinsky AL. Cross-cultural code-switching: The psychological challenges of adapting behavior in foreign cultural interactions. Acad Manage Rev. 2007;32:622–40. Garner GL. Managing Heterosexism and Biphobia: A Revealing Black Bisexual Male Perspective. Ann Arbor (MI): ProQuest; 2008. Burt RS. Brokerage and Closure: An Introduction to Social Capital. New York (NY): Oxford University Press; 2005. Zaza S, Wright-De Aguero LK, Briss PA, et al. Data collection instrument and procedure for systematic reviews in the Guide to Community Preventive Services. Task Force on Community Preventive Services. Am J Prev Med. 2000;18(1S):44–74. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009;151:264–9. Wheeler DP. Working with positive men: HIV prevention with black men who have sex with men. AIDS Educ Prev. 2005;17(1 Suppl A):102–15. Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS. 1999;13:1123–31. Bith-Melander P, Sheoran B, Sheth L, Bermudez C, Drone J, Wood W, Schroeder K. Understanding sociocultural and psychological factors affecting transgender people of color in San Francisco. J Assoc Nurses AIDS Care. 2010;21:207–20. Peek ME, Wilson SC, Gorawara-Bhat R, Quinn MT, Odoms-Young A, Chin MH. Barriers and facilitators to Shared Decision making among African-Americans with Diabetes. J Gen Intern Med. 2009;24:1135–9. Peek ME, Odoms-Young A, Quinn MT, Gorawara-Bhat R, Wilson SC, Chin MH. Race and Shared Decision making: Perspectives of African-American Patients with Diabetes. Soc Sci Med. 2010;71:1–9. Peek ME, Odoms-Young A, Quinn MT, Gorawara-Bhat R, Wilson SC, Chin MH. Racism in healthcare: Its relationship to shared decision making and health disparities: A response to Bradby. Soc Sci Med. 2010;71:13–17. Schultz A, Mullings L. Gender, Race, Class and Health: Intersectional Approaches. San Francisco (CA): Jossey-Bass; 2006. Bowleg L. The problem with the phrase women and minorities: intersectionality-an important theoretical framework for public health. Am J Public Health. 2012;102:1267–73. Jones CP. Levels of racism: a theoretic framework and a gardener’s tale. Am J Public Health. 2000;90:1212–15. Greenwald AG, McGhee DE, Schwartz JL. Measuring individual differences in implicit cognition: the implicit association test. J Pers Soc Psychol. 1998;74:1464–80. Hamilton DL, ed. Cognitive processes in stereotyping and intergroup behavior. Hillsdale, NJ: Erlbaum; 1981. Green AR, Carney DR, Pallin DJ, Ngo LH, Raymond KL, Iezzoni LI, Banaji MR. Implicit Bias among Physicians and its Prediction of Thrombolysis Decisions for Black and White Patients. J Gen Intern Med. 2007;22:1231–8. Heslin PA, Bell MP, Fletcher PO. The devil without and within: A conceptual model of social cognitive processes whereby discrimination leads stigmatized minorities to become discouraged workers. J Organ Behav. 2012;33:840–862. Kimmel M, Ferber A. Privilege: A reader. Boulder (CO): Westview Press; 2013. Smith DB. Addressing racial inequities in health care: civil rights monitoring and report cards. J Health Polit Policy Law. 1998;23:75–105. Wheeler DP. Strategies for evaluating our AIDS organizations and programs: How can we serve our people better? In: Grant L, Stewart P, Lynch V, eds. Social workers address the HIV/AIDS crisis: Voices from and to the African-American family. Westport, CT: Praeger; 1998:99–117. Peek ME, Gorawara-Bhat R, Quinn MT, Young AO, Wilson SC, Chin MH. Trust and shared decision making among African-Americans with diabetes. Health Commun. 2013;28:616–23. Nathan AG, Marshall IM, Cooper JM, Huang ES. Use of decision aids with minority patients: a systematic review. J Gen Intern Med. doi:10.1007/s11606-016-3609-2. DeMeester RH, Lopez FY, Moore JE, Cook SC, Chin MH. A model of organizational context and shared decision making: application to LGBT racial and ethnic minority patients. J Gen Intern Med. forthcoming. Schneider JA, Zhou AN, Laumann EO. A new HIV prevention network approach: Sociometric peer change agent selection. Soc Sci Med. 2015;125:192–202.