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

Monica E. Peek, Fanny Y. Lopez, H. Sharif Williams, Lucy J. Xu, Moira C. McNulty, M. Ellen Acree, John A. Schneider

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.