Original Article
Barriers to Employment of African American Professionals in Hospice: A Qualitative Study With African American Social Work Students
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(3) 280-285 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114546543 ajhpm.sagepub.com
Bridget Munoz, BS1,2, Elizabeth Garrett, MSW1, Dona Reese, PhD1, and Meaghan Roberts, MSW1
Abstract A major barrier to African American hospice utilization is the lack of African American hospice professionals. This qualitative study with 10 female African American social work students in a Midwestern university explored whether the participants were interested in hospice employment. Results provided information about reasons for the overall lack of diversity in hospice, reasons for the lack of African American staff in hospice, reasons for the lack of African American patients in hospice, and avenues toward knowledge about hospice by African American professionals. Barriers to African American employment included a lack of hospice content in social work education, differences between African American cultural and religious beliefs and hospice philosophy, and that the lack of African American hospice patients resulted in a lack of desire for employment in hospice. Strategies for recruiting and retaining African American hospice social workers are proposed. Keywords social work, cultural competence, African American access, community, outreach, hospice, organizational barriers
Background Current research has indicated that patients from diverse cultural groups still have a lack of utilization of hospice1 and lower satisfaction with end-of-life care.2 One major barrier to African American utilization of hospice is the lack of African American hospice staff.3-6 Organizational cultural competence in health care describes the ability of systems to provide care to patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs.7 Models of organizational cultural competence include maximizing diversity, conducting community assessments, collecting community and patient feedback and information about patient preferences, developing quality measures for diverse patient populations, and ensuring culturally and linguistically appropriate health education materials and health promotion and disease prevention interventions.7 Capitman and colleagues’ Assessment Handbook guides the exploration of 6 domains: mission, governance and administration, personnel practices and staffing patterns, service offerings and caregiving approaches, targeting, and marketing and outreach.8 Individuals of all races and ethnicities can develop cultural competence, increasing their effectiveness in working with clients of different races and ethnicities from their own. However, we argue, in concurrence with the authors cited
previously, that organizational cultural competence, in contrast with individual cultural competence, includes the development of a culturally diverse workforce. A national-mixed methods study1 asked hospice directors to rate organizational barriers to cultural competence. Lack of applications from diverse applicants was one of the top two barriers, rated second in importance only to lack of funding for additional staff for community outreach or development of culturally competent programs. The National Hospice and Palliative Care Organization (NHPCO) sent an invitation to participate in this study to all US hospices nationally, of whom 207 participated. The study found that 94% of staff and 96% of volunteers were white and non-Latino(a). Only 2% of the staff, 1% of volunteers, and 4% of the patients were African American. A separate NHPCO report indicated that in 2012, only 8.6% of hospice patients were African American.9
1
School of Social Work, Southern Illinois University Carbondale, Carbondale, IL, USA 2 Rehabilitation Institute, Southern Illinois University Carbondale, Carbondale, IL, USA Corresponding Author: Dona Reese, PhD, School of Social Work, Southern Illinois University, Mail Code 4329, Carbondale, IL 62901-4329, USA. Email: [email protected]
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In contrast to this figure, African Americans made up 13.1% of the total US population in 2012.10 A question that comes to mind is whether discrimination exists on the part of hospices in hiring African American health care professionals and admitting African American patients. Reese and Beckwith1 found that organizational culture may serve as a barrier that prevents hospices from implementing culturally competent services. Aspects of such an organizational culture found in this study included not recognizing or not wanting to recognize cultural differences, staff being unconcerned about this topic where there was a lack of diversity, discomfort with diversity—including hesitation and discomfort in serving diverse groups or working with diverse staff, and discomfort using interpreters if the family can speak some English or serve as an interpreter for the patient.1 This implies that discrimination may be a factor in hiring and retaining diverse staff and in serving diverse patients. This article will focus mainly, though, on reasons why African American health care professionals may not be willing to be employed in hospice. It is also necessary to integrate discussion of a closely related problem, the lack of willingness of African American patients to be served by hospice. Cort11 explains the problem of African Americans’ unwillingness to be served by hospice through the concept of cultural mistrust. Cultural mistrust refers to African Americans’ mistrust of white Americans and traditional American systems, including education, health care, and criminal justice. Due to mistreatment of African Americans in the health care system, they hold the belief that their race is devalued in the eyes of American society, and see this as the cause of episodes of neglectful and inhumane treatment. For example, African Americans are aware of the infamous Tuskegee study, which contributes to this mistrust.5 Due to cultural mistrust, African Americans prefer informal care to formal hospice care. This reflects the value of taking care of our own. It makes sense then, that cultural mistrust serves as a barrier within a setting where the cultural/racial background of health care workers is not the same as the patients.11 Existing research provides evidence supporting Cort’s theory. In qualitative interviews in a study in one southern Midwestern community,12 African Americans who had cared for a terminally ill patient without hospice care shared openly intimate reasons for the importance of diverse staff within hospice. Participants expressed a sense of shame in asking white authorities for help. Difficult experiences with previous white-led health care providers had left them with an expectation that white health care professionals would disrespect one’s beliefs and had also left them with an unwillingness to participate in government programs. Participants expressed a fear of actual harm by health care staff. Participants believed, based on actual past experience with the health care system, that if one complains about the services, it will result in punishment.12 African American pastors expressed in another previous study5 that due to mistrust of the white health care system, African American patients at the time of their death would find comfort in seeing ‘‘a friendly face,’’5(p554) meaning a
health care professional of their own race. Participants in this study reported that African American people have responded to a lack of care in the United States with their ethic of taking care of our own. The church has played a major role in caring for the African American people and keeping them safe. Participants in a study by Jackson and colleagues13 echoed this sentiment, expressing concern over the lack of African American staff in hospice and in the health care system in general. One man in the study who had been a family member of a hospice patient noted that ‘‘they didn’t even have a black preacher to pray for my brother.’’13(p70) Given the history of neglect and discrimination, and the resulting mistrust of the white health care system, it is understandable that a diverse staff would seem more approachable and safe to clients from oppressed minority groups. Although cultural competence on the part of white staff is clearly a priority for quality care, many of diverse patients’ concerns and recommendations would be addressed by increasing the presence of ethnic minority employees among hospice providers.6 The reality is that the experience of African American terminally ill patients and their loved ones is dramatically better with hospice care than without it.12 Thus, it is important to create a more diverse hospice work force in order to increase hospice utilization by African American patients. Existing research regarding reasons for the lack of African American staff in hospice is reviewed subsequently. Most of the literature pertaining to the lack of diversity in the field of hospice contains results of studies about patients only. There are very few researchers who discuss the lack of diversity of hospice staff. One study was found that compared African American physician attitudes toward hospice with white physicians, finding a more negative attitude among African Americans.14 McGaughey15 examined reasons why African American social workers decline to work in hospice through qualitative interviews with five African American social work students at a southern Midwestern university. Barriers to hospice employment of African Americans found in this study included lack of hospice content in social work education, lack of knowledge about hospice services and its benefits, participants having interest in other areas, and the lack of African American patients in hospice. McGaughey’s study also found that some of the same barriers underlying the lack of hospice utilization by African American patients explain the lack of diversity among hospice staff. Participant’s views on death and dying, religious beliefs, and expected family roles in caring for their loved ones served as cultural barriers to African American social workers’ employment in hospice.15 McGaughey’s study was the only one found on the question of barriers to African American employment in hospice. The sample for her qualitative study was small (n ¼ 5) and was not representative of the population.15 Thus, further research is needed on this question; this study builds upon her results. Her study was conducted in 2005; it is also valuable to observe whether the situation has changed since then.
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282 We know that a lack of applications from diverse health care professionals is considered by directors to be a major organizational barrier to cultural competence in hospice.1 The purpose of the current study was to explore further whether African American social work students would consider employment in hospice, and if not, why not? It was hoped that the findings of this study could be used to develop solutions for increasing the diversity of hospice staff.
Methodology
remaining seven interviews were conducted during a graduate social work class, by the first author, who was an undergraduate social work student at the time. Those who agreed to participate self-administered individual questionnaires that contained qualitative questions. Participants wrote their qualitative responses to the questions on the questionnaires and then returned them to the researcher. The data were analyzed manually, using open coding and then axial coding, to identify major themes and subthemes under each major theme.
Results
Qualitative interviews were conducted with 10 African American female Master of Social Work (MSW) students in 1 Midwestern university. A qualitative design was used because of the exploratory nature of the study and also as an empowerment research method. Institutional review board approval was obtained before conducting the study. We selected the sample by inviting all African American MSW students to participate in the program. Potential participants were contacted by an e-mail cover letter that requested their involvement and described what their participation would involve. The lead researcher collecting the data was an undergraduate social work student; she had little contact with the MSW students outside of the study and was not registered for any classes with them. The interview consisted of five qualitative questions pertaining to beliefs and knowledge about hospice. These five questions were as follows: Do you have any past experiences with the field of hospice? What have you heard about or believe about hospice? Why do you think there are so few African American workers within this field? Do you know anyone who has used hospice services, or worked for them? Would you ever consider working for hospice? Why or why not?
Our initial plan for data collection was to conduct individual, face-to-face interviews in a private room in the School of Social Work. We experienced great difficulty in recruiting participants, however; only one student agreed to be interviewed using this approach. For this reason, we used several different methods for conducting the interviews, until we obtained 10 interviews. These methods are discussed subsequently. Informed consent was sought before conducting the interviews. (1) The first interview was conducted in a private room in the school of social work. The researcher administered the questions and then recorded the responses into a word document on a laptop as the participant spoke. (2) The second interview was conducted through e-mail. The questions were sent through an e-mail message, and the participant responded through an e-mail message. (3) The third interview was conducted by telephone, and responses were recorded into a word document on a laptop as the participant spoke. (4) The
Consistent with the purpose of the study, all participants were African American MSW students. All participants who volunteered for the study were female. Results included information about 4 topics—reasons for the overall lack of diversity in hospice, reasons for the lack of African American staff in hospice, reasons for the lack of African American patients in hospice, and whether participants would personally consider working in hospice. Major themes and subthemes will be discussed subsequently. Some participant quotes are provided to illustrate the points made.
Reasons for Overall Lack of Diversity in Hospice Major themes within reasons for overall lack of diversity in hospice included hospice philosophy/dominant white values differ from African American cultural values and beliefs and lack of outreach to the African American community. Hospice philosophy/dominant white cultural values differ from African American cultural values and beliefs. The traditional African American value of sanctity of life was mentioned by participants as a reason that African Americans prefer not to work in hospice. Acceptance of death is seen as a lack of faith, and continuing life is valued. Hospice philosophy, in states that do not allow assisted suicide, is that death is not to be hastened or delayed but allowed to happen naturally. The fact of not delaying death, and allowing it to happen naturally, differs from the traditional African American value of sanctity of life. This value, as expressed in previous research findings, is oriented toward extending life—in a traditional African American perspective, it means using all possible curative methods and praying for a miracle. In referring to this value, a participant said, ‘‘African American culture values life differently than the dominant culture.’’ Lack of outreach to the African American community. Participants noted that a reason for lack of diversity is that hospices often do not engage in community outreach. A participant said, ‘‘Hospice does not promote their services to the African American population.’’
Reasons for Lack of African American Staff in Hospice Major themes within reasons for lack of African American staff in hospice included amount of interest in the field, amount
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of knowledge about the field, discomfort regarding the topic of dying, hospice is not oriented toward employing African Americans, and lack of African American patients in hospice. Amount of interest in the field. Participants said that some people have other professional interests. Amount of knowledge about the field. Amount of knowledge about hospice was considered a factor in whether African American health care professionals are willing to work in hospice. Subthemes included the fact that hospice is a fairly new field, whether their social work education includes content about hospice, whether they have had personal or professional exposure to hospice, and level of accuracy of their knowledge about hospice. Hospice is a fairly new field. Since hospice was not established in the United States until 1974, it is still not as familiar to the public as other forms of medical care. Whether their social work education includes content about hospice. Some students had exposure to a professor who was a previous hospice social worker, some knew other students who had a social work field placement in hospice, and some pursued continuing education about hospice after being exposure to hospice in their social work program. Whether they have had personal or professional exposure to hospice. There were some participants who had previous professional experience in hospice. Some personally knew hospice professionals. Some participants had past personal experience with family members or friends being served by hospice. Personal exposure to hospice included referral near the death of a family member, having had a white hospice worker assigned to a hospice patient they knew, and hospice was the only service available. A participant noted that ‘‘If hospice wasn’t there, I don’t know who would have done it.’’ Some participants reported positive perceptions about hospice. Some participants said they had only heard good things about hospice, and some stated they had heard that the hospice staff is caring. Level of accuracy of their knowledge about hospice. Some participants revealed correct knowledge about hospice, including that hospice is a service for terminally ill patients, hospice staff provide services in the patient’s home, and hospice provides services for family members—including helping families cope and providing support to family members. Some knew that hospice is holistic, and that it focuses on patient safety, comfort care, and anxiety. Some participants, on the other hand, believed misinformation about hospice including the following: one has to be a medical professional to work in hospice, hospice is only an inpatient service, and hospice is the same as a nursing home. Discomfort regarding the topic of dying. Some participants noted that a reason for the lack of African American staff is discomfort with death and dying. This is true for most social workers regardless of race/ethnicity, but this may be especially true for
African Americans due to a traditional cultural avoidance of discussion of this topic.5 Participant quotes included, ‘‘Some individuals cannot handle constant death,’’ and ‘‘It is hard to handle a client dying if you are attached to the client.’’ Hospice is not oriented toward employing African Americans. An organizational barrier was noted, that was attributed to the hospice itself, of racism, of avoidance of hiring African American health care professionals. A participant stated, ‘‘There are few African Americans in the field of hospice because hospice is not targeted or geared toward employing African Americans.’’ Lack of African American patients in hospice. Participants said that a reason for the lack of African American health care professionals in hospice is the fact that there are very few African American patients in hospice. Participant quotes included, ‘‘Many African Americans have the mindset that they would like to help their race before they help another race,’’ and, ‘‘The idea of having a job within a field that most of your culture doesn’t participate in makes it less attractive.’’
Reasons for Lack of African American Patients in Hospice Lack of African American workers leads to lack of African American patients. The reason given for the lack of African American patients in hospice was the lack of African American workers.
Whether Students Would Consider Working in Hospice A final topic was whether students would consider working in hospice. Some participants said they would consider it and some said they would not consider working in hospice. Yes, I would consider it. Some participants said they would consider working in hospice. Major themes included desire to address the lack of hospice utilization by African Americans, positive personal experience with hospice, it would be valuable social work experience, and interest in the hospice field. Desire to address the lack of hospice utilization by African Americans. A reason given for willingness to work in hospice was a desire to address the lack of hospice utilization by African Americans. A participant said, ‘‘If hospice appeals to more qualified African Americans, it can potentially appeal to the African American population.’’ Positive personal experience with hospice. Some participants stated that based on their own positive personal experience with hospice, they would consider working in hospice. It would be valuable social work experience. Some participants thought that working in hospice would be valuable social work experience. Interest in the hospice field. A final subtheme for willingness to work in the hospice field was an interest in the field. A participant stated, ‘‘After gaining more knowledge of the field, I
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284 would like to aid the family as well as the individual patient with the dying and grieving process.’’ No, I would not consider working in hospice. Some participants stated that they would not consider working in hospice. Major themes included misinformation about hospice, discomfort with the topic of death and dying, other professional interests, and discomfort with working in a predominately white environment. Misinformation about hospice. Some reasons given for an unwillingness to work in hospice revealed misinformation about hospice. For example, a participant stated, ‘‘you have to be in a medical field to work in hospice.’’ Discomfort with the topic of death and dying. A second reason for a lack of willingness to work in hospice was discomfort with the topic of death and dying. A participant said, ‘‘I probably would not ever work for hospice. You know that they’re going to die, and I don’t like to think about death like that. I like to think that people are going to get better.’’ This statement also expresses a difference between hospice philosophy and traditional African American religious beliefs in acceptance of death. Other professional interests. Another reason given for a lack of willingness to work in hospice was other professional interests on the part of the participant—‘‘I’m more interested in working with couples and children within child welfare.’’ Discomfort with working in a predominately white environment. Finally, participants stated that a reason for being unwilling to work in hospice was discomfort with working in a predominantly white environment.
Discussion The only study found that explored African American health care professionals’ or professional students’ willingness to work in hospice was by McGaughey in 2005.15 Results of the current study are consistent with McGaughey: barriers to African American employment in hospice included lack of knowledge about hospice, lack of diversity in the hospice field, and differences between hospice philosophy and African American cultural and religious beliefs in views about end-of-life care.15 This study provides confirmation and further articulation of the McGaughey findings in a little-studied, highly important area. An important barrier, confirmed in this study, is the lack of interest by African Americans in working in a field that has a lack of diversity in both staff and patients. The view was also confirmed that the lack of African American staff in hospice leads to a lack of desire on the part of African American patients to accept hospice services. The implication of these results is that we must work toward both goals at the same time—increasing the diversity of the staff at the same time as the patient population. New information documented was participants’ views that hospice does not reach out to the African American community. The current study found some evidence of knowledge about
hospice in our sample, including positive opinions about hospice, but this was a result of personally knowing hospice clients or staff, or some exposure during their MSW program, rather than outreach by hospice to the community. Some of the knowledge reflected long-standing problems, including experience in having a white hospice staff person assigned to their relative or friend’s case, and a referral to hospice shortly before death. Finally, evidence was found of a willingness by some participants to work in hospice, which may be seen as an improvement since the 2005 McGaughey study. This willingness may be a reflection of the MSW program’s hospice content or even a response to the study itself. Barriers found in the McGaughey study remained for other participants, as noted previously. Although Cort’s Cultural Mistrust Theory11 provides an explanation for the lack of hospice utilization by African American patients, results of this study do not reflect cultural mistrust as a cause of the lack of African American hospice professionals. Views expressed about hospice did not reflect mistrust of the health care system, and misinformation did not include the perception that hospice is the same as assisted suicide, as has been found in studies with African American people.16 Both McGaughey’s15 study and the current study found that some traditional African American cultural and religious beliefs reduced the interest of some social work students in working in hospice. But mistrust of the system is a different concept than traditional beliefs. Perhaps the greater knowledge of health care professionals about hospice or the health care system, as compared to community members, explains this difference in cultural mistrust between the African American community and African American health care professionals. This implies that recruitment of African American health care professionals may be somewhat less of a challenge than outreach to the African American community. Results of this study have implications for social work education. Reasons expressed for a willingness to work in this field may form a helpful strategy for recruiting students for work in end-of-life care, for which there is an increasing need and opportunity due to the aging of the Baby Boomer generation. An important factor influencing willingness to work in the field was knowledge about hospice. Those who had access to correct information expressed willingness to work in a hospice; those who had misconceptions about hospice were not willing to consider working there. These findings provide evidence about the importance of including end-of-life care content in social work education. A limitation of the study is that it was conducted in a single site. The small nonrandom sample cannot be considered representative of the population of African American social work students. In addition, multiple data collection methods were used to obtain the participant responses. Finally, all participants were female. Quantitative research with a representative sample, with items based on the major themes of this study as well as the McGaughey study,15 would be helpful in further exploring this problem. Despite these limitations, the results of this study provide important guidance in an area with so little documentation of factors causing this problem that affects so many. According
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to these two exploratory studies (the current study as well as McGaughey’s study15), it might be difficult for hospice agencies to recruit African American staff when they have no African American patients. The lack of hospice utilization by African Americans is a circular problem that has to be addressed simultaneously with potential African American hospice staff as well as African American patients needing hospice care. One approach that has been found to be effective16 is a field placement in which African American students are placed in hospice, and conduct community outreach, cultural competence training for staff, and direct service to African American clients (Eugene Kepner, MSW, Policy analysis of barriers to African American access to hospice, May 2009). This approach can be implemented within a university–community–hospice partnership, similar to service learning, which reaches out both to potential hospice professionals and community members at the same time. Making this a paid field placement would increase the attractiveness to students and could come with an obligation to work in the hospice after graduation.17 During the field placement, and after the students are hired as hospice social workers, it will be necessary to show them the support needed to keep them in the hospice. In addition to this approach, a helpful strategy is for practicing social workers to provide continuing education opportunities,18-20 with a specific effort to recruit African American participants. Finally, a necessary strategy for recruiting diverse applicants for hospice positions is continuous community outreach by the hospice. In conclusion, the results of this study provide further documentation, as well as some new information, about barriers to the employment of African American professionals in hospice. The results have implications for social work education as well as recruitment strategies. A university–community–hospice partnership may be beneficial in implementing these strategies. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The first author received a stipend for conducting this project through the Saluki Research Rookies Program.
References 1. Reese D, Beckwith S. Organizational barriers to cultural competence in hospice [published online March 12, 2014]. Am J Hosp Palliat Care. 2014. doi:10.1177/1049909113520614. 2. Welch L, Teno J, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53(7):1145-1153. 3. Bullock K. The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care. 2011;7(1):83-98. 4. Elioff C. Accepting hospice care: issues for the African American community. Smith Coll Stud Soc Work. 2003;73(3):377-384. 5. Reese D, Ahern R, Nair S, O’Faire J, Warren C. Hospice access and use by African Americans: addressing cultural and institutional barriers through participatory action research. Soc Work. 1999;44(6):549-559.
6. Washington KT, Bickel-Swenson D, Stephens N. Barriers to hospice use among African Americans: a systematic review. Health Soc Work. 2008;33(4):267-274. 7. Betancourt J, Green A, Carrillo JE. Cultural Competence in Health Care: Emerging Frameworks and Practical Approaches. New York: Commonwealth Fund; 2002. http://www.common wealthfund.org/Publications/Fund-Reports/2002/Oct/Cultural-Com petence-in-Health-Care–Emerging-Frameworks-and-PracticalApproaches.aspx. Accessed September 7, 2013. 8. Capitman J, Hernandez-Gallegos G, Yee D, Madzimoyo W. Diversity and the Aging Network: An Assessment Handbook. Waltham, MA: National Aging Resource Center: Long-term Care, Brandeis University, The Heller School; 1991. 9. National Hospice and Palliative Care Organization. NHPCO’s facts and figures: hospice care in America; 2012. http://www. nhpco.org/sites/default/files/public/Statistics_Research/2013_ Facts_Figures.pdf. Accessed December 31, 2013. 10. US Census Bureau; 2012. http://quickfacts.census.gov/qfd/states/ 00000.html. Accessed March 3, 2014. 11. Cort MA. Cultural mistrust and use of hospice care: challenges and remedies. J Palliat Med. 2004;7(1):63-71. 12. Reese D, Smith M, Butler C, Shrestha S, Erwin D. African American client satisfaction with hospice: a comparison of primary caregiver experiences within and outside of hospice. Am J Hosp Palliat Med. 2014;31(5):495-502. 13. Jackson F, Schim SM, Seely S, Grunow K, Baker J. Barriers to hospice care for African Americans: problems and solutions. J Hosp Palliat Nurs. 2000;2(2):65-72. 14. Ache KA, Shannon RP, Heckman MG, Diehl NN, Willis FB. A preliminary study comparing attitudes toward hospice referral between African American and white American primary care physicians. J Palliat Med. 2011;14(5):542-547. 15. McGaughey BA. Barriers to Employment of African American Social Workers in Hospice [master’s thesis]. Fayetteville, AR: University of Arkansas; 2005. 16. Reese D, Jurkowski E. University–community–hospice partnership to address organizational barriers to cultural competence. Paper presented at the Annual Program Meeting of the Council on Social Work Education, Atlanta, GA, October 30, 2011. 17. Reese D. Proposal for a university–community–hospice partnership to address organizational barriers to cultural competence. Am J Hosp Palliat Med. 2011;28(1):22-26. 18. Clark EJ. The future of social work in end-of-life care: A call to action. In: Berzoff J, Silverman PR, eds. Living With Dying: A Handbook for End-of-Life Healthcare Practitioners. New York: Columbia University Press; 2004:838-847. 19. Csikai E, Jones B. Professional development: educational opportunities and resources. In: Altilio T, Otis-Green S, eds. Oxford Textbook of Palliative Social Work. New York: Oxford University Press; 2011. 20. National Association of Social Workers, Social Work Policy Institute. Hospice Social Work: Linking Policy, Practice, and Research: A Report from the March 25, 2010 Symposium. Washington, DC: National Association of Social Workers, Social Work Policy Institute; 2010.
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Barriers to Employment of African American Professionals in Hospice: A Qualitative Study With African American Social Work Students
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(3) 280-285 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114546543 ajhpm.sagepub.com
Bridget Munoz, BS1,2, Elizabeth Garrett, MSW1, Dona Reese, PhD1, and Meaghan Roberts, MSW1
Abstract A major barrier to African American hospice utilization is the lack of African American hospice professionals. This qualitative study with 10 female African American social work students in a Midwestern university explored whether the participants were interested in hospice employment. Results provided information about reasons for the overall lack of diversity in hospice, reasons for the lack of African American staff in hospice, reasons for the lack of African American patients in hospice, and avenues toward knowledge about hospice by African American professionals. Barriers to African American employment included a lack of hospice content in social work education, differences between African American cultural and religious beliefs and hospice philosophy, and that the lack of African American hospice patients resulted in a lack of desire for employment in hospice. Strategies for recruiting and retaining African American hospice social workers are proposed. Keywords social work, cultural competence, African American access, community, outreach, hospice, organizational barriers
Background Current research has indicated that patients from diverse cultural groups still have a lack of utilization of hospice1 and lower satisfaction with end-of-life care.2 One major barrier to African American utilization of hospice is the lack of African American hospice staff.3-6 Organizational cultural competence in health care describes the ability of systems to provide care to patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs.7 Models of organizational cultural competence include maximizing diversity, conducting community assessments, collecting community and patient feedback and information about patient preferences, developing quality measures for diverse patient populations, and ensuring culturally and linguistically appropriate health education materials and health promotion and disease prevention interventions.7 Capitman and colleagues’ Assessment Handbook guides the exploration of 6 domains: mission, governance and administration, personnel practices and staffing patterns, service offerings and caregiving approaches, targeting, and marketing and outreach.8 Individuals of all races and ethnicities can develop cultural competence, increasing their effectiveness in working with clients of different races and ethnicities from their own. However, we argue, in concurrence with the authors cited
previously, that organizational cultural competence, in contrast with individual cultural competence, includes the development of a culturally diverse workforce. A national-mixed methods study1 asked hospice directors to rate organizational barriers to cultural competence. Lack of applications from diverse applicants was one of the top two barriers, rated second in importance only to lack of funding for additional staff for community outreach or development of culturally competent programs. The National Hospice and Palliative Care Organization (NHPCO) sent an invitation to participate in this study to all US hospices nationally, of whom 207 participated. The study found that 94% of staff and 96% of volunteers were white and non-Latino(a). Only 2% of the staff, 1% of volunteers, and 4% of the patients were African American. A separate NHPCO report indicated that in 2012, only 8.6% of hospice patients were African American.9
1
School of Social Work, Southern Illinois University Carbondale, Carbondale, IL, USA 2 Rehabilitation Institute, Southern Illinois University Carbondale, Carbondale, IL, USA Corresponding Author: Dona Reese, PhD, School of Social Work, Southern Illinois University, Mail Code 4329, Carbondale, IL 62901-4329, USA. Email: [email protected]
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In contrast to this figure, African Americans made up 13.1% of the total US population in 2012.10 A question that comes to mind is whether discrimination exists on the part of hospices in hiring African American health care professionals and admitting African American patients. Reese and Beckwith1 found that organizational culture may serve as a barrier that prevents hospices from implementing culturally competent services. Aspects of such an organizational culture found in this study included not recognizing or not wanting to recognize cultural differences, staff being unconcerned about this topic where there was a lack of diversity, discomfort with diversity—including hesitation and discomfort in serving diverse groups or working with diverse staff, and discomfort using interpreters if the family can speak some English or serve as an interpreter for the patient.1 This implies that discrimination may be a factor in hiring and retaining diverse staff and in serving diverse patients. This article will focus mainly, though, on reasons why African American health care professionals may not be willing to be employed in hospice. It is also necessary to integrate discussion of a closely related problem, the lack of willingness of African American patients to be served by hospice. Cort11 explains the problem of African Americans’ unwillingness to be served by hospice through the concept of cultural mistrust. Cultural mistrust refers to African Americans’ mistrust of white Americans and traditional American systems, including education, health care, and criminal justice. Due to mistreatment of African Americans in the health care system, they hold the belief that their race is devalued in the eyes of American society, and see this as the cause of episodes of neglectful and inhumane treatment. For example, African Americans are aware of the infamous Tuskegee study, which contributes to this mistrust.5 Due to cultural mistrust, African Americans prefer informal care to formal hospice care. This reflects the value of taking care of our own. It makes sense then, that cultural mistrust serves as a barrier within a setting where the cultural/racial background of health care workers is not the same as the patients.11 Existing research provides evidence supporting Cort’s theory. In qualitative interviews in a study in one southern Midwestern community,12 African Americans who had cared for a terminally ill patient without hospice care shared openly intimate reasons for the importance of diverse staff within hospice. Participants expressed a sense of shame in asking white authorities for help. Difficult experiences with previous white-led health care providers had left them with an expectation that white health care professionals would disrespect one’s beliefs and had also left them with an unwillingness to participate in government programs. Participants expressed a fear of actual harm by health care staff. Participants believed, based on actual past experience with the health care system, that if one complains about the services, it will result in punishment.12 African American pastors expressed in another previous study5 that due to mistrust of the white health care system, African American patients at the time of their death would find comfort in seeing ‘‘a friendly face,’’5(p554) meaning a
health care professional of their own race. Participants in this study reported that African American people have responded to a lack of care in the United States with their ethic of taking care of our own. The church has played a major role in caring for the African American people and keeping them safe. Participants in a study by Jackson and colleagues13 echoed this sentiment, expressing concern over the lack of African American staff in hospice and in the health care system in general. One man in the study who had been a family member of a hospice patient noted that ‘‘they didn’t even have a black preacher to pray for my brother.’’13(p70) Given the history of neglect and discrimination, and the resulting mistrust of the white health care system, it is understandable that a diverse staff would seem more approachable and safe to clients from oppressed minority groups. Although cultural competence on the part of white staff is clearly a priority for quality care, many of diverse patients’ concerns and recommendations would be addressed by increasing the presence of ethnic minority employees among hospice providers.6 The reality is that the experience of African American terminally ill patients and their loved ones is dramatically better with hospice care than without it.12 Thus, it is important to create a more diverse hospice work force in order to increase hospice utilization by African American patients. Existing research regarding reasons for the lack of African American staff in hospice is reviewed subsequently. Most of the literature pertaining to the lack of diversity in the field of hospice contains results of studies about patients only. There are very few researchers who discuss the lack of diversity of hospice staff. One study was found that compared African American physician attitudes toward hospice with white physicians, finding a more negative attitude among African Americans.14 McGaughey15 examined reasons why African American social workers decline to work in hospice through qualitative interviews with five African American social work students at a southern Midwestern university. Barriers to hospice employment of African Americans found in this study included lack of hospice content in social work education, lack of knowledge about hospice services and its benefits, participants having interest in other areas, and the lack of African American patients in hospice. McGaughey’s study also found that some of the same barriers underlying the lack of hospice utilization by African American patients explain the lack of diversity among hospice staff. Participant’s views on death and dying, religious beliefs, and expected family roles in caring for their loved ones served as cultural barriers to African American social workers’ employment in hospice.15 McGaughey’s study was the only one found on the question of barriers to African American employment in hospice. The sample for her qualitative study was small (n ¼ 5) and was not representative of the population.15 Thus, further research is needed on this question; this study builds upon her results. Her study was conducted in 2005; it is also valuable to observe whether the situation has changed since then.
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282 We know that a lack of applications from diverse health care professionals is considered by directors to be a major organizational barrier to cultural competence in hospice.1 The purpose of the current study was to explore further whether African American social work students would consider employment in hospice, and if not, why not? It was hoped that the findings of this study could be used to develop solutions for increasing the diversity of hospice staff.
Methodology
remaining seven interviews were conducted during a graduate social work class, by the first author, who was an undergraduate social work student at the time. Those who agreed to participate self-administered individual questionnaires that contained qualitative questions. Participants wrote their qualitative responses to the questions on the questionnaires and then returned them to the researcher. The data were analyzed manually, using open coding and then axial coding, to identify major themes and subthemes under each major theme.
Results
Qualitative interviews were conducted with 10 African American female Master of Social Work (MSW) students in 1 Midwestern university. A qualitative design was used because of the exploratory nature of the study and also as an empowerment research method. Institutional review board approval was obtained before conducting the study. We selected the sample by inviting all African American MSW students to participate in the program. Potential participants were contacted by an e-mail cover letter that requested their involvement and described what their participation would involve. The lead researcher collecting the data was an undergraduate social work student; she had little contact with the MSW students outside of the study and was not registered for any classes with them. The interview consisted of five qualitative questions pertaining to beliefs and knowledge about hospice. These five questions were as follows: Do you have any past experiences with the field of hospice? What have you heard about or believe about hospice? Why do you think there are so few African American workers within this field? Do you know anyone who has used hospice services, or worked for them? Would you ever consider working for hospice? Why or why not?
Our initial plan for data collection was to conduct individual, face-to-face interviews in a private room in the School of Social Work. We experienced great difficulty in recruiting participants, however; only one student agreed to be interviewed using this approach. For this reason, we used several different methods for conducting the interviews, until we obtained 10 interviews. These methods are discussed subsequently. Informed consent was sought before conducting the interviews. (1) The first interview was conducted in a private room in the school of social work. The researcher administered the questions and then recorded the responses into a word document on a laptop as the participant spoke. (2) The second interview was conducted through e-mail. The questions were sent through an e-mail message, and the participant responded through an e-mail message. (3) The third interview was conducted by telephone, and responses were recorded into a word document on a laptop as the participant spoke. (4) The
Consistent with the purpose of the study, all participants were African American MSW students. All participants who volunteered for the study were female. Results included information about 4 topics—reasons for the overall lack of diversity in hospice, reasons for the lack of African American staff in hospice, reasons for the lack of African American patients in hospice, and whether participants would personally consider working in hospice. Major themes and subthemes will be discussed subsequently. Some participant quotes are provided to illustrate the points made.
Reasons for Overall Lack of Diversity in Hospice Major themes within reasons for overall lack of diversity in hospice included hospice philosophy/dominant white values differ from African American cultural values and beliefs and lack of outreach to the African American community. Hospice philosophy/dominant white cultural values differ from African American cultural values and beliefs. The traditional African American value of sanctity of life was mentioned by participants as a reason that African Americans prefer not to work in hospice. Acceptance of death is seen as a lack of faith, and continuing life is valued. Hospice philosophy, in states that do not allow assisted suicide, is that death is not to be hastened or delayed but allowed to happen naturally. The fact of not delaying death, and allowing it to happen naturally, differs from the traditional African American value of sanctity of life. This value, as expressed in previous research findings, is oriented toward extending life—in a traditional African American perspective, it means using all possible curative methods and praying for a miracle. In referring to this value, a participant said, ‘‘African American culture values life differently than the dominant culture.’’ Lack of outreach to the African American community. Participants noted that a reason for lack of diversity is that hospices often do not engage in community outreach. A participant said, ‘‘Hospice does not promote their services to the African American population.’’
Reasons for Lack of African American Staff in Hospice Major themes within reasons for lack of African American staff in hospice included amount of interest in the field, amount
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of knowledge about the field, discomfort regarding the topic of dying, hospice is not oriented toward employing African Americans, and lack of African American patients in hospice. Amount of interest in the field. Participants said that some people have other professional interests. Amount of knowledge about the field. Amount of knowledge about hospice was considered a factor in whether African American health care professionals are willing to work in hospice. Subthemes included the fact that hospice is a fairly new field, whether their social work education includes content about hospice, whether they have had personal or professional exposure to hospice, and level of accuracy of their knowledge about hospice. Hospice is a fairly new field. Since hospice was not established in the United States until 1974, it is still not as familiar to the public as other forms of medical care. Whether their social work education includes content about hospice. Some students had exposure to a professor who was a previous hospice social worker, some knew other students who had a social work field placement in hospice, and some pursued continuing education about hospice after being exposure to hospice in their social work program. Whether they have had personal or professional exposure to hospice. There were some participants who had previous professional experience in hospice. Some personally knew hospice professionals. Some participants had past personal experience with family members or friends being served by hospice. Personal exposure to hospice included referral near the death of a family member, having had a white hospice worker assigned to a hospice patient they knew, and hospice was the only service available. A participant noted that ‘‘If hospice wasn’t there, I don’t know who would have done it.’’ Some participants reported positive perceptions about hospice. Some participants said they had only heard good things about hospice, and some stated they had heard that the hospice staff is caring. Level of accuracy of their knowledge about hospice. Some participants revealed correct knowledge about hospice, including that hospice is a service for terminally ill patients, hospice staff provide services in the patient’s home, and hospice provides services for family members—including helping families cope and providing support to family members. Some knew that hospice is holistic, and that it focuses on patient safety, comfort care, and anxiety. Some participants, on the other hand, believed misinformation about hospice including the following: one has to be a medical professional to work in hospice, hospice is only an inpatient service, and hospice is the same as a nursing home. Discomfort regarding the topic of dying. Some participants noted that a reason for the lack of African American staff is discomfort with death and dying. This is true for most social workers regardless of race/ethnicity, but this may be especially true for
African Americans due to a traditional cultural avoidance of discussion of this topic.5 Participant quotes included, ‘‘Some individuals cannot handle constant death,’’ and ‘‘It is hard to handle a client dying if you are attached to the client.’’ Hospice is not oriented toward employing African Americans. An organizational barrier was noted, that was attributed to the hospice itself, of racism, of avoidance of hiring African American health care professionals. A participant stated, ‘‘There are few African Americans in the field of hospice because hospice is not targeted or geared toward employing African Americans.’’ Lack of African American patients in hospice. Participants said that a reason for the lack of African American health care professionals in hospice is the fact that there are very few African American patients in hospice. Participant quotes included, ‘‘Many African Americans have the mindset that they would like to help their race before they help another race,’’ and, ‘‘The idea of having a job within a field that most of your culture doesn’t participate in makes it less attractive.’’
Reasons for Lack of African American Patients in Hospice Lack of African American workers leads to lack of African American patients. The reason given for the lack of African American patients in hospice was the lack of African American workers.
Whether Students Would Consider Working in Hospice A final topic was whether students would consider working in hospice. Some participants said they would consider it and some said they would not consider working in hospice. Yes, I would consider it. Some participants said they would consider working in hospice. Major themes included desire to address the lack of hospice utilization by African Americans, positive personal experience with hospice, it would be valuable social work experience, and interest in the hospice field. Desire to address the lack of hospice utilization by African Americans. A reason given for willingness to work in hospice was a desire to address the lack of hospice utilization by African Americans. A participant said, ‘‘If hospice appeals to more qualified African Americans, it can potentially appeal to the African American population.’’ Positive personal experience with hospice. Some participants stated that based on their own positive personal experience with hospice, they would consider working in hospice. It would be valuable social work experience. Some participants thought that working in hospice would be valuable social work experience. Interest in the hospice field. A final subtheme for willingness to work in the hospice field was an interest in the field. A participant stated, ‘‘After gaining more knowledge of the field, I
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284 would like to aid the family as well as the individual patient with the dying and grieving process.’’ No, I would not consider working in hospice. Some participants stated that they would not consider working in hospice. Major themes included misinformation about hospice, discomfort with the topic of death and dying, other professional interests, and discomfort with working in a predominately white environment. Misinformation about hospice. Some reasons given for an unwillingness to work in hospice revealed misinformation about hospice. For example, a participant stated, ‘‘you have to be in a medical field to work in hospice.’’ Discomfort with the topic of death and dying. A second reason for a lack of willingness to work in hospice was discomfort with the topic of death and dying. A participant said, ‘‘I probably would not ever work for hospice. You know that they’re going to die, and I don’t like to think about death like that. I like to think that people are going to get better.’’ This statement also expresses a difference between hospice philosophy and traditional African American religious beliefs in acceptance of death. Other professional interests. Another reason given for a lack of willingness to work in hospice was other professional interests on the part of the participant—‘‘I’m more interested in working with couples and children within child welfare.’’ Discomfort with working in a predominately white environment. Finally, participants stated that a reason for being unwilling to work in hospice was discomfort with working in a predominantly white environment.
Discussion The only study found that explored African American health care professionals’ or professional students’ willingness to work in hospice was by McGaughey in 2005.15 Results of the current study are consistent with McGaughey: barriers to African American employment in hospice included lack of knowledge about hospice, lack of diversity in the hospice field, and differences between hospice philosophy and African American cultural and religious beliefs in views about end-of-life care.15 This study provides confirmation and further articulation of the McGaughey findings in a little-studied, highly important area. An important barrier, confirmed in this study, is the lack of interest by African Americans in working in a field that has a lack of diversity in both staff and patients. The view was also confirmed that the lack of African American staff in hospice leads to a lack of desire on the part of African American patients to accept hospice services. The implication of these results is that we must work toward both goals at the same time—increasing the diversity of the staff at the same time as the patient population. New information documented was participants’ views that hospice does not reach out to the African American community. The current study found some evidence of knowledge about
hospice in our sample, including positive opinions about hospice, but this was a result of personally knowing hospice clients or staff, or some exposure during their MSW program, rather than outreach by hospice to the community. Some of the knowledge reflected long-standing problems, including experience in having a white hospice staff person assigned to their relative or friend’s case, and a referral to hospice shortly before death. Finally, evidence was found of a willingness by some participants to work in hospice, which may be seen as an improvement since the 2005 McGaughey study. This willingness may be a reflection of the MSW program’s hospice content or even a response to the study itself. Barriers found in the McGaughey study remained for other participants, as noted previously. Although Cort’s Cultural Mistrust Theory11 provides an explanation for the lack of hospice utilization by African American patients, results of this study do not reflect cultural mistrust as a cause of the lack of African American hospice professionals. Views expressed about hospice did not reflect mistrust of the health care system, and misinformation did not include the perception that hospice is the same as assisted suicide, as has been found in studies with African American people.16 Both McGaughey’s15 study and the current study found that some traditional African American cultural and religious beliefs reduced the interest of some social work students in working in hospice. But mistrust of the system is a different concept than traditional beliefs. Perhaps the greater knowledge of health care professionals about hospice or the health care system, as compared to community members, explains this difference in cultural mistrust between the African American community and African American health care professionals. This implies that recruitment of African American health care professionals may be somewhat less of a challenge than outreach to the African American community. Results of this study have implications for social work education. Reasons expressed for a willingness to work in this field may form a helpful strategy for recruiting students for work in end-of-life care, for which there is an increasing need and opportunity due to the aging of the Baby Boomer generation. An important factor influencing willingness to work in the field was knowledge about hospice. Those who had access to correct information expressed willingness to work in a hospice; those who had misconceptions about hospice were not willing to consider working there. These findings provide evidence about the importance of including end-of-life care content in social work education. A limitation of the study is that it was conducted in a single site. The small nonrandom sample cannot be considered representative of the population of African American social work students. In addition, multiple data collection methods were used to obtain the participant responses. Finally, all participants were female. Quantitative research with a representative sample, with items based on the major themes of this study as well as the McGaughey study,15 would be helpful in further exploring this problem. Despite these limitations, the results of this study provide important guidance in an area with so little documentation of factors causing this problem that affects so many. According
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to these two exploratory studies (the current study as well as McGaughey’s study15), it might be difficult for hospice agencies to recruit African American staff when they have no African American patients. The lack of hospice utilization by African Americans is a circular problem that has to be addressed simultaneously with potential African American hospice staff as well as African American patients needing hospice care. One approach that has been found to be effective16 is a field placement in which African American students are placed in hospice, and conduct community outreach, cultural competence training for staff, and direct service to African American clients (Eugene Kepner, MSW, Policy analysis of barriers to African American access to hospice, May 2009). This approach can be implemented within a university–community–hospice partnership, similar to service learning, which reaches out both to potential hospice professionals and community members at the same time. Making this a paid field placement would increase the attractiveness to students and could come with an obligation to work in the hospice after graduation.17 During the field placement, and after the students are hired as hospice social workers, it will be necessary to show them the support needed to keep them in the hospice. In addition to this approach, a helpful strategy is for practicing social workers to provide continuing education opportunities,18-20 with a specific effort to recruit African American participants. Finally, a necessary strategy for recruiting diverse applicants for hospice positions is continuous community outreach by the hospice. In conclusion, the results of this study provide further documentation, as well as some new information, about barriers to the employment of African American professionals in hospice. The results have implications for social work education as well as recruitment strategies. A university–community–hospice partnership may be beneficial in implementing these strategies. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The first author received a stipend for conducting this project through the Saluki Research Rookies Program.
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6. Washington KT, Bickel-Swenson D, Stephens N. Barriers to hospice use among African Americans: a systematic review. Health Soc Work. 2008;33(4):267-274. 7. Betancourt J, Green A, Carrillo JE. Cultural Competence in Health Care: Emerging Frameworks and Practical Approaches. New York: Commonwealth Fund; 2002. http://www.common wealthfund.org/Publications/Fund-Reports/2002/Oct/Cultural-Com petence-in-Health-Care–Emerging-Frameworks-and-PracticalApproaches.aspx. Accessed September 7, 2013. 8. Capitman J, Hernandez-Gallegos G, Yee D, Madzimoyo W. Diversity and the Aging Network: An Assessment Handbook. Waltham, MA: National Aging Resource Center: Long-term Care, Brandeis University, The Heller School; 1991. 9. National Hospice and Palliative Care Organization. NHPCO’s facts and figures: hospice care in America; 2012. http://www. nhpco.org/sites/default/files/public/Statistics_Research/2013_ Facts_Figures.pdf. Accessed December 31, 2013. 10. US Census Bureau; 2012. http://quickfacts.census.gov/qfd/states/ 00000.html. Accessed March 3, 2014. 11. Cort MA. Cultural mistrust and use of hospice care: challenges and remedies. J Palliat Med. 2004;7(1):63-71. 12. Reese D, Smith M, Butler C, Shrestha S, Erwin D. African American client satisfaction with hospice: a comparison of primary caregiver experiences within and outside of hospice. Am J Hosp Palliat Med. 2014;31(5):495-502. 13. Jackson F, Schim SM, Seely S, Grunow K, Baker J. Barriers to hospice care for African Americans: problems and solutions. J Hosp Palliat Nurs. 2000;2(2):65-72. 14. Ache KA, Shannon RP, Heckman MG, Diehl NN, Willis FB. A preliminary study comparing attitudes toward hospice referral between African American and white American primary care physicians. J Palliat Med. 2011;14(5):542-547. 15. McGaughey BA. Barriers to Employment of African American Social Workers in Hospice [master’s thesis]. Fayetteville, AR: University of Arkansas; 2005. 16. Reese D, Jurkowski E. University–community–hospice partnership to address organizational barriers to cultural competence. Paper presented at the Annual Program Meeting of the Council on Social Work Education, Atlanta, GA, October 30, 2011. 17. Reese D. Proposal for a university–community–hospice partnership to address organizational barriers to cultural competence. Am J Hosp Palliat Med. 2011;28(1):22-26. 18. Clark EJ. The future of social work in end-of-life care: A call to action. In: Berzoff J, Silverman PR, eds. Living With Dying: A Handbook for End-of-Life Healthcare Practitioners. New York: Columbia University Press; 2004:838-847. 19. Csikai E, Jones B. Professional development: educational opportunities and resources. In: Altilio T, Otis-Green S, eds. Oxford Textbook of Palliative Social Work. New York: Oxford University Press; 2011. 20. National Association of Social Workers, Social Work Policy Institute. Hospice Social Work: Linking Policy, Practice, and Research: A Report from the March 25, 2010 Symposium. Washington, DC: National Association of Social Workers, Social Work Policy Institute; 2010.
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