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Although transplant centers are required to educate patients about kidney transplantation (KT) and living donation (LD), little is known about the educational format, and cultural and linguistic competence necessary for patients to make informed treatment decisions. This study surveyed US transplant administrators about education provided concerning KT and LD and culturally and linguistically competent care. Transplant administrators were invited to participate in an anonymous Internet-based survey about education format, education providers, promoting LD, culturally and linguistically competent care and center characteristics. Most (61%) transplant administrators contacted (N = 280/461) completed the survey. Most administrators (91%) reported that their center provides any type of formal education in their pre-KT evaluation. Education was mostly provided by: nurses (97%), social workers (72%) and surgeons (55%), and predominantly as one-on-one (80%) versus group discussions (60%). Education was primarily delivered through written materials (93%). Written educational materials in Spanish (86%) and the provision of interpreters (82%) were emphasized over educational sessions in Spanish (39%), or employing bilingual (51%) and bicultural staff (39%). Half (55%) promoted LD as the best option. Transplant centers need to take greater efforts to consistently provide appropriate education, promote LD, and provide culturally and linguistically competent care to ensure effective communication with all patients.
Patients with end-stage organ disease are routinely referred to transplant centers to learn about transplantation and eligibility for transplantation or donation. Patients' rights condition of Medicare participation for hospitals (1) require that transplant candidates and potential donors be educated about the procedures, risks, benefits and alternatives to transplantation (2). Transplant centers are required to provide patients with an extensive informed consent process beginning at referral and ending at surgery (3). However, there is no standardized tool that evaluates and assures comprehension in informed consent tailored to transplantation, although the Department of Veterans Affairs has developed a generic tool for surgical procedures (4).
Transplant education is essential for ensuring patients’ and donors’ informed treatment decisions and increasing patients’ access to transplantation (5). Education is also pivotal for increasing the likelihood that patients will pursue the option of living donation (LD), which offers better health outcomes for the recipients than deceased donor kidney transplants (6).
Little is known about how transplant programs educate patients and who provides this education. Studies report that transplant nurses typically provide most education, followed by transplant nephrologists or surgeons (7,8). The absence of a standardized process for educating patients raises ethical concerns about the quality of care. Consistent levels of education across transplant centers are needed to facilitate equal awareness of and access to transplantation (7). A study of kidney transplant candidates found that they received more education from transplant centers (79%) than from dialysis centers (66%), their regular physician (54%), or themselves (31%) and desired more information on LD (5). Such research suggests that patients rely heavily on transplant centers for education about their treatment options.
Furthermore, simply providing education is not sufficient. Rather, education must be delivered in culturally and linguistically competent ways. Table 1 presents definitions of these types of competency. National policy-making organizations including the Institute of Medicine (IOM), American Medical Association (AMA) and Department of Health and Human Services (DHHS) advocate for the provision of culturally and linguistically competent care as a form of quality and patient-centered care (13,14). Culturally and linguistically competent care is integral to Health People 2010 goals to increase quality and years of healthy life and to eliminate health disparities (15).
Table 1. Definitions of culture, cultural competency and linguistic competency
|Culture||Culture, or civilization, taken in its broad, ethnographic sense, is that complex whole which includes knowledge, belief, art, morals, law, custom, and any other capabilities and habits acquired by man as a member of society.9|
|Cultural competency||A set of values, principles, behaviors, attitudes, policies and structures that enable organizations and individuals to work effectively in cross-cultural situations.10|
|Linguistic competency||The capacity…to communicate effectively and convey information in a manner that is easily understood by diverse audiences including persons of limited English proficiency, those who have low literacy skills or are not literate, individuals with disabilities and those who are deaf or hard of hearing10,11|
|Limited English proficiency||Individuals who do not speak English as their primary language and who have a limited ability to read, speak, write or understand English can be limited English proficient, or ‘LEP’. These individuals may be entitled language assistance with respect to a particular type or service, benefit or encounter… Federal laws particularly applicable to language access include Title VI of the Civil Rights Act of 1964 and the Title VI regulations, prohibiting discrimination based on national origin, and Executive Order 13166 issued in 2000. Many individual federal programs, states and localities also have provisions requiring language services for LEP individuals.12|
The extent to which transplant centers provide culturally and linguistically competent care remains unknown. However, providing culturally and linguistically competent care is especially important in transplantation because the proportion of racial and ethnic minority kidney transplant recipients is rapidly increasing. In particular, Hispanics are the fastest growing ethnic minority group in the United States and comprised 14.7% of kidney transplant recipients in 2009 (16). Additionally, Hispanics are disproportionately represented (17.9%) among candidates waiting for a kidney (16), indicating that Hispanics need kidney transplants disproportionately more than Non-Hispanic Whites. Moreover, cultural values and beliefs inform Hispanics’ and other minority groups’ treatment decisions regarding transplantation and LD (17).
Culturally competent programs may help to address patients’ cultural concerns and increase LD rates. Culturally competent interventions have been found to increase deceased organ donation rates among African Americans and Hispanics (6,18). Therefore, it is important for transplant centers to provide culturally and linguistically competent care so that racial/ethnic minority patients can better comprehend available treatment options and effectively manage their transplant if that option is pursued.
We undertook this study to assess the extent to which US kidney transplant programs provide education and culturally and linguistically competent care to kidney transplant candidates, recipients and donors. Assessing how transplant centers provide the education, which clinicians provide the education and the availability of culturally sensitive education services can allow us to establish standards of education and care.
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This is the first national survey to assess the provision of education and culturally and linguistically competent care across adult and pediatric kidney transplant centers. We found three key results. First, transplant centers vary in the provision of education in terms of who provides it and the format of delivery. Second, transplant centers insufficiently promote LD as an option. Third, transplant centers provide few forms of culturally and linguistically competent care to their multicultural and/or Hispanic kidney transplant patient populations.
Most centers rely predominantly on nurses in combination with other clinicians and various educational formats to deliver education to kidney transplant patients. Other research corroborates our findings (7). In an older study that surveyed 503 living kidney donors, their principal sources of information on donation were the recipient's transplant nephrologist or the transplant surgeon (45.5%), followed by the transplant nurse (27.1%), other health care professionals (9.5%), social workers (5.7%) and others (12.2%) (8).
We found that most administrators (86%) reported using written materials for educating transplant patients. Similarly, a survey study of 403 abdominal organ transplant recipients’ preferred educational delivery methods prior to transplantation were one-on-one discussions with health care providers (48%), video tapes or DVDs (47%) and computer resources (47%) (20).
Additionally, in an older survey, living kidney donors (N = 536) reported having received information through discussions (94.2%), printed materials (47.3%), lectures (6.4%), slides, movies and videos (3.2%), with most reporting that information was reasonably or extremely helpful (74.9%), acceptable (20.7%) or not helpful (4.4%) (8).
The relatively small proportion of administrators who reported that their centers provide educational sessions in Spanish is problematic given that a high proportion of Hispanic patients are Spanish speaking. Given a constant need, it is unclear why centers do not consistently provide information in Spanish across all materials. However, our finding that the number of Spanish speakers was proportionate to the provision of Spanish-language written educational materials suggests that centers with larger Spanish-speaking patient populations are more likely to meet the needs of their Spanish-speaking patient population.
The greater reliance on written educational material in Spanish over educational discussions in Spanish may undermine learning among limited English proficient and low literate patients (see Table 1). Limited English proficient individuals constitute over 47 million (18%) US citizens, and one-third of men and women in the United States are at the lowest levels of health literacy (21). A national survey shows that 41% of Latinos were classified at the lowest level (below basic) of literacy proficiency compared to 9% of whites and 24% of African Americans (22). Accordingly, alternative educational formats should be used. Research among healthy individuals found that recall improves when information is delivered both visually and auditorily when individuals discuss the material (23). Further, based on our experiences at Northwestern's Comprehensive Transplant Center, which includes a transplant program focused solely on Hispanics, almost 75% of the Hispanic patients are Spanish-only speaking. We recommend that transplant centers with a high proportion of Hispanic or Spanish-only speaking patients increase their use of group discussions, and consider delivering discussions in Spanish.
Transplant centers insufficiently promote LD. Given that living kidney donation leads to the best transplant recipient outcomes (16) and that most kidney transplant centers (68%) in 2009 had an operational living kidney donation program (24), (defined as performing at least 10 living donor kidney transplants per year), it was surprising to find that only half of the respondents reported informing patients that LD is the optimal treatment. It is unknown why half of administrators report that their centers do not promote LD. We recommend that transplant centers provide more formal educational programs about LD to increase the likelihood of LD, ensure informed treatment decisions, improve kidney recipient outcomes and to help reduce the organ shortage.
Our data indicate that US kidney transplant centers provide few forms of culturally and linguistically competent care. The emphasis on linguistic competency appears to have overshadowed the need for culturally competent efforts. Although interpreters are valuable, myriad logistic and ethical problems with translation remain (14), particularly when communicating about complex clinical conditions such as transplantation. Nonetheless, considerably fewer centers rely upon bicultural and bilingual staff.
Although bicultural and bilingual staff hold a wealth of knowledge about transplantation, staff who are both bilingual and bicultural are additionally valuable for being able to communicate with patients in their native language and for being personally familiar with the cultural traditions of a specific patient population. Although bilingual-only staff may be familiar with some cultural norms as expressed through the language, they are less likely to be proficient in patients’ cultural belief system. Bicultural transplant staff may therefore be most effective in communicating with patients and their respective families who may maintain beliefs and values about kidney donation and transplantation that differ from transplant professionals’ expectations.
Transplant program administrators may question whether they need to provide linguistically and culturally competent care to patients representing all cultural groups. According to Title VI, communicating with limited English proficiency patients, all hospitals receiving Department of Health and Human Services (DHHS) Federal financial assistance must take reasonable steps to ensure meaningful access to information and services they provide to limited English proficient persons (25). It would behoove transplant centers to take a leadership role in providing culturally and linguistically competent care given the unique needs of their transplant recipient and donor populations and the potential impact of such care on their outcomes (26). Enhancing transplant centers’ educational programs and increasing their cultural and linguistic competency requires resources: staff availability, financial support and time. Others have recommended approaches to overcoming time barriers for education including sending videos or CDs to dialysis centers for distribution (20).
Our study has some limitations. As the survey was anonymous, we were not able to assess the quality of education or culturally competent care at any individual transplant center. Transplant administrators may not be aware of the educational content that clinicians provide to patients. Because we contacted multiple administrators at each center, some centers may have been overrepresented in the dataset. Thus the actual response rate is likely higher than reported: although some administrators from programs contacted us to excuse themselves from participation as they represented programs that perform nonkidney transplants and were thus ineligible, it is unknown if all such administrators had done so. It remains to be seen whether or not some or all of these kinds of cultural and linguistic competencies are more effective than others. We did not assess readability of consent forms in this study.
Future research is needed to assess transplant and donor candidates’ preferences for education delivery regarding transplantation and LD, and to identify transplant patients’ needs for culturally sensitive transplant care. Studies should develop culturally competent educational and clinical practice interventions, and evaluate the impact of culturally competent transplant education and care on satisfaction, patient outcomes and LD rates. Educational interventions should take into consideration that patients experience psychosocial stress, which may impact their learning process (27). Furthermore, evaluating the extent to which centers adhere to CMS guidelines regarding both assigning separate teams for donor and recipient advocacy, and assessing patients’ comprehension of information about transplantation and donation such as through the teach-back method, would help advance understanding of pretransplant education. Qualitative research may be an optimal approach to raising awareness among transplant professionals about the myriad psychosocial and other factors that influence the informed consent process.
Transplant centers need to take greater efforts to consistently provide education, promote LD as an option, and provide culturally and linguistically competent care to ensure effective communication with all patients.