BACKGROUND Renal replacement therapies (RRT) other than in-centre haemodialyses are underutilised by African Americans with end-stage renal disease (ESRD) even though they are associated with reduced costs, morbidity and mortality as well as improved quality of life for patients. OBJECTIVES To understand African American patients' knowledge of RRT options and how patient, provider and system-factors contribute to knowledge and preferences. Participants' interviews were conducted at the University of Chicago Medical Center with African American patients with chronic kidney disease (CKD). The final analysis included 28 interviews; 22 patients had CKD not yet on dialysis or having received a transplant, while 6 had reached ESRD and were receiving treatment for kidney failure. Approach Transcripts were uploaded into NVivo8 for coding. Thematic analysis was used for data interpretation. RESULTS Four themes were identified: (1) limited knowledge of home modalities and deceased donor options, (2) CKD patients gave little thought to choosing RRT options, (3) CKD patients relied on doctors for treatment decisions, and (4) while patients reported knowledge of living kidney donation transplants (LKDT), it did not translate to receiving an LKDT. CONCLUSION African Americans face significant knowledge and access barriers when deciding on their RRT treatment. Even patients with advanced CKD were still in the early stages of RRT selection. Understanding the knowledge gaps and barriers patients face will inform our subsequent intervention to educate and motivate patients to increase CKD self-care and improve communication between patients, their families and their providers about different RRT treatments.
Introduction Intersectionality considers how different identities simultaneously affect an individual's experiences. Those of multiple minority statuses may experience effects of intersecting systems of oppression. Most health disparities curricula do not focus on intersectionality. We studied the impact of an innovative module teaching intersectionality of sexual orientation, gender identity, and race/ethnicity issues in the required Pritzker School of Medicine course Health Care Disparities: Equity and Advocacy. Methods A short lecture reviewed sexual and gender minority (SGM) health disparities, intersectionality, minority stress, and shared decision making (SDM) to establish shared language among 83 first-year medical students. Students then viewed four videos of SGM patients of color (POC) describing their health care experiences, each followed by moderated discussion about how compounded minority stress affects lived experiences and health and how to improve SDM for SGM POC. One video interviewee attended the session and answered students’ questions. Evaluation was performed using pre- and postsurveys. Results Feeling somewhat/completely confident in defining intersectionality increased from 57% to 96%. Prior to the session, 62% of respondents reported feeling somewhat/completely confident in identifying barriers to care for SGM patients, and 92% after. Thirty-three percent felt somewhat/completely confident in asking SGM patients about their identities before the session, and 81% after. Eighty-four percent rated the session as very good or excellent. Discussion The session was well received, improved student knowledge of intersectionality, and improved confidence in communicating with and caring for SGM patients. Future iterations could include condensing the lecture and including a patient panel and/or small-group discussion.
Patients with advanced stages of chronic kidney disease (CKD), especially racial minorities, often do not receive treatment or education until specific symptoms begin to manifest. The Patient Referral and Education Program prior to Renal Replacement Therapy (PREP-RRT) study is intended to capture the perspective of African Americans receiving renal care and then tailor education for hospitalized patients who may not be well linked to the medical system. In the U.S., African Americans and other minorities are less likely to be seen by a nephrologist prior to dialysis and the lack of pre-dialysis care and education is associated with lower likelihood of pre-emptive transplant. The primary outcome for the PREP-RRT study will be change in patient knowledge, attitudes and behavior about CKD treatment options which will be assessed by the previously validated Kidney Knowledge Survey (KiKS). Secondary outcomes of interest are patient satisfaction with education, time-to-event for nephrology appointment, appearance at transplant center, likelihood of fistula, self-care dialysis at dialysis initiation, or documentation of patient decision not to initiate RRT. The PREP RRT intervention will identify, educate and motivate patients to increase CKD self-care and to improve communication and shared decision-making about RRT treatments among patients, their families and their providers.
ContextAfrican-Americans with chronic kidney disease (CKD) are more likely to progress to end-stage renal disease (ESRD). However, African-Americans are less likely to receive care to delay progression of their CKD and to prepare for ESRD treatment.ObjectiveThe objectives of the study are to understand knowledge among urban, African-American patients diagnosed with CKD and to discover ways they managed their illness and prepared for kidney disease progression.DesignA qualitative study was conducted using structured interviews. Thematic analysis was used for data interpretation. All 23 participants identified as African-American and had CKD but had not yet reached ESRD requiring renal replacement therapy (RRT). Over half of the participants were women (57%), and the mean age was 53years old.ResultsThree themes emerged from the data. African-Americans often did not know the severity of their CKD. They struggled to complete all of the diet, exercise, and medication tasks recommended to manage their health conditions, including CKD. Finally, participants, even those with stage 5 CKD, viewed progression to RRT in the next 12months as unlikely.ConclusionAfrican-Americans face many barriers to CKD self-care and preparation for ESRD. Improving outcomes requires clinicians to help patients understand the severity of their CKD, to make informed choices about their care, all the while motivating patients to take actions to prevent CKD progression.
Sexual and gender minority patients have historically experienced high rates of inappropriate and low-quality care, disrespect, and discrimination in health care settings, as well as significant health disparities. Obstetricians and gynecologists can take action on multiple fronts if they wish to improve the quality of care for their sexual and gender minority patients. Examples include improving their relationships with sexual and gender minority patients and family members by purposefully reflecting upon individual and team biases, engendering empathy for sexual and gender minority patients, and creating effective working health care partnerships with them. They can also take steps to improve their cultural competency by improving their knowledge base about sexual orientation and gender identity, using welcoming language and creating health care environments that signal to sexual and gender minority patients that they are welcomed and understood. This article documents multiple suggestions and resources that health care teams can use to improve the health and health care of their sexual and gender minority patients.
Effective shared decision making (SDM) between patients and healthcare providers has been positively associated with health outcomes. However, little is known about the SDM process between Latino patients who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ), and their healthcare providers. Our review of the literature identified unique aspects of Latino LGBTQ persons' culture, health beliefs, and experiences that may affect their ability to engage in SDM with their healthcare providers. Further research needs to examine Latino LGBTQ patient-provider experiences with SDM and develop tools that can better facilitate SDM in this patient population.
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.
Background: Asian American Pacific Islander (AAPI) sexual and gender minorities (SGM) face unique challenges in mental health and accessing high-quality health care. Objective: The objective of this study was to identify barriers and facilitators for shared decision making (SDM) between AAPI SGM and providers, especially surrounding mental health. Research Design: Interviews, focus groups, and surveys. Subjects: AAPI SGM interviewees in Chicago (n=20) and San Francisco (n=20). Two focus groups (n=10) in San Francisco. Measures: Participants were asked open-ended questions about their health care experiences and how their identities impacted these encounters. Follow-up probes explored SDM and mental health. Participants were also surveyed about attitudes towards SGM disclosure and preferences about providers. Transcripts were analyzed for themes and a conceptual model was developed. Results: Our conceptual model elucidates the patient, provider, and encounter-centered factors that feed into SDM for AAPI SGM. Some participants shared the stigma of SGM identities and mental health in their AAPI families. Their AAPI and SGM identities were intertwined in affecting mental health. Some providers inappropriately controlled the visibility of the patient’s identities, ignoring or overemphasizing them. Participants varied on whether they preferred a provider of the same race, and how prominently their AAPI and/or SGM identities affected SDM. Conclusions: Providers should understand identity-specific challenges for AAPI SGM to engage in SDM. Providers should self-educate about AAPI and SGM history and intracommunity heterogeneity before the encounter, create a safe environment conducive to patient disclosure of SGM identity, and ask questions about patient priorities for the visit, pronouns, and mental health.
Shared decision making (SDM) occurs when patients and clinicians work together to reach care decisions that are both medically sound and responsive to patients' preferences and values. SDM is an important tenet of patient-centered care that can improve patient outcomes. Patients with multiple minority identities, such as sexual orientation and race/ethnicity, are at particular risk for poor SDM. Among these dual-minority patients, added challenges to clear and open communication include cultural barriers, distrust, and a health care provider's lack of awareness of the patient's minority sexual orientation or gender identity. However, organizational factors like a culture of inclusion and private space throughout the visit can improve SDM with lesbian, gay, bisexual, and transgender ("LGBT") racial/ethnic minority patients who have faced stigma and discrimination. Most models of shared decision making focus on the patient-provider interaction, but the health care organization's context is also critical. Context-an organization's structure and operations-can strongly influence the ability and willingness of patients and clinicians to engage in shared decision making. SDM is most likely to be optimal if organizations transform their contexts and patients and providers improve their communication. Thus, we propose a conceptual model that suggests ways in which organizations can shape their contextual structure and operations to support SDM. The model contains six drivers: workflows, health information technology, organizational structure and culture, resources and clinic environment, training and education, and incentives and disincentives. These drivers work through four mechanisms to impact care: continuity and coordination, the ease of SDM, knowledge and skills, and attitudes and beliefs. These mechanisms can activate clinicians and patients to engage in high-quality SDM. We provide examples of how specific contextual changes could make SDM more effective for LGBT racial/ethnic minority populations, focusing especially on transformations that would establish a safe environment, build trust, and decrease stigma.