Culturally Appropriate Programs for Asian-American Leukemia Patients

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International Journal of Public Administration Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/lpad20

Culturally Appropriate Programs for Asian-American Leukemia Patients a

Michelle Saint-Germain & Ruby Ogawa

a

a

Graduate Center for Public Policy and Administration , California State University Long Beach , Long Beach , California , USA Published online: 15 Mar 2012.

To cite this article: Michelle Saint-Germain & Ruby Ogawa (2004) Culturally Appropriate Programs for Asian-American Leukemia Patients, International Journal of Public Administration, 27:1-2, 63-81, DOI: 10.1081/PAD-120028653 To link to this article: http://dx.doi.org/10.1081/PAD-120028653

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INTERNATIONAL JOURNAL OF PUBLIC ADMINISTRATION Vol. 27, Nos. 1 & 2, pp. 63–81, 2004

Culturally Appropriate Programs for Asian-American Leukemia Patients Michelle Saint-Germain* and Ruby Ogawa Graduate Center for Public Policy and Administration, California State University Long Beach, Long Beach, California, USA

ABSTRACT This article describes the experience of the Culturally Appropriate Patient Support System (CAPSS), a project designed to help Asian leukemia patients with limited English proficiency in obtaining a bone marrow transplant. The California Endowment funded this two-year program to provide simultaneous translation and interpretation and case management services to Korean- and Vietnamesespeaking leukemia patients in Los Angeles and Orange counties in California. The CAPSS project was based on the assumption that understanding the significance of cultural influences and language difficulties on health beliefs and health behavior is fundamental to the development of successful programs for Asians and Pacific Islander

*Correspondence: Michelle Saint-Germain, Graduate Center for Public Policy and Administration, California State University, Long Beach, 1250 Bellflower Blvd., Long Beach, CA 90840, USA; Fax: (562) 985-4672; E-mail: msaintg@ csulb.edu. 63 DOI: 10.1081/PAD-120028653 Copyright & 2004 by Marcel Dekker, Inc.

0190-0692 (Print); 1532-4265 (Online) www.dekker.com

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(API) cancer patients. This article focuses on the Korean-speaking element of the program, and evaluates the extent to which program goals were met. It concludes with recommendations for future programs targeting Asian cancer patients with limited English proficiency.

INTRODUCTION This article describes the experience of the Culturally Appropriate Patient Support System (CAPSS), a project designed to help Asian leukemia patients with limited English proficiency in obtaining a bone marrow transplant. The California Endowment funded this two-year program to provide simultaneous translation and interpretation and case management services to Korean- and Vietnamese-speaking leukemia patients in Los Angeles and Orange counties in California. The CAPSS project was based on the assumption that understanding the significance of cultural influences and language difficulties on health beliefs and health behavior is fundamental to the development of successful programs for Asians and Pacific Islander (API) cancer patients. This article focuses on the Korean-speaking element of the program, and evaluates the extent to which program goals were met. It concludes with recommendations for future programs targeting Asian cancer patients with limited English proficiency.

BACKGROUND The health of Asian populations living in the U.S. was not well known until late in the 20th century. The release of the Report of the Secretary’s Task Force on Black and Minority Health in 1985 promoted a new level of awareness on the health status of blacks and other minorities among policy makers at the national level. This report marked the beginning of programs and initiatives designed to alleviate disparities in the health of minority populations.[1] More recently, other initiatives have been adopted to include more culturally competent, health-related services for limited English proficiency populations. These include the Disadvantaged Minority Health Care Act of 1990 and Title VI of the Civil Rights Act of 1994, which mandated the Department of Health and Human Services to provide equal access to its programs and services to people with limited English skills and of different ethnic, racial, or cultural populations. Executive Order 13125

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Culturally Appropriate Programs for Asian-American Leukemia Patients Table 1.

Growth in API population 1970–2000.

API population % of US population % of California population

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1970

1980

1999

2000

0.7 2.6

1.5 5.3

2.9 9.6

3.8 12.3

Source: US Bureau of the Census, 2002.

followed, signed in June 1999, authorizing federal departments to allocate resources toward the unmet needs of Asian/Pacific Islanders; and Executive Order 13166, signed in August 2000, addressed the need for translation of documents and provision of interpreters for limited English proficiency (LEP) patients. The need for such services for Asians and Pacific Islanders (API) is partly a result of the increasing presence of this group in the U.S. Between 1950 and 2000, with an annual average growth rate of 7.4%, the API population was the most rapidly-growing minority group (Table 1). Much of that growth occurred after changes in policy to allow more API immigrants and refugees. From 1980 to 2000, the number of API persons grew by 204%, while the total US population grew by only 24.4%. The API population in the US is projected to reach over 15 million by the year 2010 increasing mostly through immigration but also through births. Almost six of every 10 current API residents in the United States are foreign born (58.9%), compared to about a third of Latinos (37.1%), and smaller proportions of whites (8%) or Blacks (.7%) and only 6.2% of the general population.[2]

ASIANS AND LIMITED ENGLISH PROFICIENCY Asian and Pacific Islanders living in the U.S. are not one homogeneous population.[3] There are numerous cultural, social, religious, and economic differences among the 49 groups speaking over 100 languages encompassed by the umbrella term API.[4] One difference is the ability to communicate in English. Members of API groups tend to be more linguistically isolated than other groups. In the most recent census, nearly one-third of the total API population (29.2%) reported being linguistically isolated. Some APIs may live in cultural ‘‘islands’’ in California, often called Chinatown, Little Tokyo, or Koreatown, with language-specific newspapers, radio, TV, churches, and stores that compound their linguistic isolation. This isolation is especially pronounced among persons

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over age 65, where more than half of Koreans, Hmong, Cambodians, Laotians, and Vietnamese are linguistically isolated.[5] Variations among API groups are due in part to the proportion of the group who are recent immigrants. Foreign-born and recently-immigrated APIs are more likely to be linguistically isolated. For example, most Japanese living in the U.S. today are from families that have lived here for 3 or 4 generations, whereas most Koreans living in the U.S. today were born in Korea. Recent immigrants—such as Koreans—are more likely than native-born members of API groups to have limited English proficiency (LEP), and to experience problems or significant delays in obtaining health care. Patients with low literacy have poorer health, higher rates of hospitalization, and higher health care costs.[6] A survey of Koreans in Los Angeles found they visited doctors 2.3 times less frequently than whites, especially when over 45 years old.[7] Limited English proficiency poses particular problems for many Asian families. For example, elders are the traditional source of authority in some Asian cultures and they command respect from younger family members. However, adults who do not speak English may rely on their children to serve as interpreters in health care situations. When children take on traditionally adult responsibilities, such as acting as spokesperson for the family, they may lose respect for their eiders.[4] This may be compounded by the parents’ loss of status due to inability to support the family financially in their new situation. API families are more likely to have incomes below the poverty level than whites, and foreign-born API families are more likely to be poor than members of native-born API groups.[5] These variations in the experiences of API groups in the U.S. in terms of immigration, social status, language, and economic situation make it imperative not to lump these different groups together, either for research or for patient support programs.[8]

ASIANS AND LEUKEMIA According to the American Cancer Society, leukemia is a form of cancer that begins in the bone marrow, and then spreads, via the blood, to many of the major organs. The causes of leukemia are not clear, and there is no known way to prevent it. Nearly all cases of leukemia occur in adults. The symptoms of leukemia, such as fatigue, weakness, weight loss, and fever, are common to a number of other diseases, making leukemia difficult to diagnose without expensive tests on bone marrow, lymph nodes, blood, and spinal fluid samples. The major treatments for leukemia are chemotherapy, blood transfusions, and antibiotics. In some cases,

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a bone marrow transplant (BMT) from a healthy donor may be the last possible remedy.[9] Asian and Pacific Islanders are an important part of the California population. API groups make up only about 4% of the national population but 12.3% of the California population.[2] In addition, there is concern that some API groups were under-counted in the latest census. For example, the 2000 census reported 55,573 Koreans in Orange County, but community leaders say the total is closer to 130,000.[10] With its relatively large API population, a number of cancers may be expected to occur in California, but again there are many differences among various API groups. For example, the most common cancers among Korean men occur in the lung, stomach, colon, and rectum, while among Vietnamese men they occur in the lung, liver, and prostate.[11] In 2003, about 30,600 new cases of leukemia will occur in the U.S., and about 21,900 people will die from this disease. About 3000 of these new cases are expected in California, of which about 162 could occur in the API population. The age-adjusted incidence of leukemia within the API population is estimated at 4.364 cases per 100,000 persons, which is lower than the incidence in whites (7.962), Blacks (7.091), or Hispanics (5.263). Survival rates vary, depending on whether the leukemia is acute or chronic, but the overall one-year survival rate is 64%.[9] Some disparities remain in cancer outcomes between Americans of Asian heritage other Americans. Some of this is due to the fact that persons from ethnic minority groups, with low socio-economic status and limited English proficiency, are less likely to receive health care services and to have poorer health outcomes.[6] For example, APIs have a lower incidence rate of leukemia, but it accounts for a greater proportion (4.1%) of cancer deaths among APIs than among whites (3.8%) or Blacks (2.8%); only Hispanics have a higher proportion (4.8%).[12] Nevertheless there are still variations within the API population. Koreans are less likely to participate in cancer screening than other API groups, which can lead to delays in diagnosis and treatment and result in higher rates of illness and death.[13] Many studies of these disparities have focused on the need for culturally competent approaches that can address structural, cultural, linguistic, and financial barriers to health care faced by members of minority ethnic groups. Yet little is known about the experience of API groups with cancer, either among health care providers or among policy makers, that could form the basis for such approaches. The relatively few studies examining the impact of cancer on API families and their responses to disease indicate that major barriers still exist for API groups, such as hesitancy to use the formal health care system, lack of knowledge

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about disease and treatments, lack of insurance or financial resources from low-paying jobs with no benefits, and cultural or linguistic isolation.[14–18]

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LEP ASIANS AND LEUKEMIA Both language and culture can play an important part in the development of programs for Asian and Pacific Islanders. Culturally- and linguistically-appropriate API services are especially needed for persons suffering from life-threatening illnesses such as leukemia. Communitybased services are especially important, since API cancer patients, in comparison to those of other minority groups, are more likely to be isolated by inadequate linguistic and cultural support systems; perceived physical and emotional threats of fatal disease; lack of accessible information about diseases; and lack of culturally appropriate information among providers.[6] Where communication is limited, the consequences can be severe, adding stress to an already difficult situation for the patient and family. Language assistance is especially needed in health care delivery settings for LEP patients.[19] For example, linguistic difficulties can complicate even the apparently simple task of taking a medical history and identifying the specific complaint presented by the patient.[6,15] Optimal relationships with providers are based on mutual confidence, empathy, and trust, which depend on a free flow of communication with doctors, nurses, social workers, psychologists, and other professionals, but interpreting services are often necessary for LEP patients. Health care providers may call upon well-intentioned but inexperienced staff for ad hoc services or encourage patients to bring their own interpreters. While the mere presence of an interpreter may obstruct the flow of confidential information from the patient to the provider, even when the interpreter is a family member, the situation is even worse when using untrained persons or children, who lack the conceptual knowledge or technical vocabulary necessary to accurately express what is being said. Incomplete or inaccurate information may cause serious complications despite the best intentions and skills of caring and competent providers. Families that are culturally or linguistically isolated may lack the finances to obtain health care, the knowledge of how to obtain it, and the fortitude to brave the formal health care system. Recently-arrived APIs may work in demanding service industry jobs that provide no health care and also leave little free time when clinics tend to be open. The combination of limited English proficiency and the lack of health

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care services located in API communities results in a lack of information necessary to make informed decisions about obtaining proper health care in a timely fashion.[15] For example, the basic information about a bone marrow transplant (BMT) is generally available only in English, which may not be helpful to LEP patients. However, even the translation of the words ‘‘bone marrow,’’ either in the context of donation or transplantation, remains problematic in some Asian languages.

CREATION OF CAPSS The Culturally Appropriate Patient Support System (CAPSS) was created in response to a need detected by recruiters for a national bone marrow donor database. The National Marrow Donor Program (NMDP) is a nonprofit organization headquartered in Minneapolis, Minnesota, that operates the donor registry for the federal government through the Health Resources and Services Administration. It was established in 1986, two years after Congress passed the National Organ Transplant Act. The NMDP coordinates bone marrow transplants by managing a worldwide network of donor centers, recruitment groups, transplant centers, blood banks, collection centers, contract laboratories, and sample repositories.[20] In 1992, the General Accounting Office (GAO) reviewed the performance of the NMDP and found that few of the 80,000 registered donors were from ethnic minority groups. At about the same time, advances in medicine indicated that the best matches for bone marrow donors (other than family members) were often found among persons from the same ethnic group and geographical area of the family of origin. For example, a Chinese patient from Northern China would most likely need a donor from the same ethnicity and region of China. In response to the GAO study, and to advances in medicine that made transplants from unrelated donors more promising, the NMDP began a recruitment drive to not only raise the total number of donors but to specifically increase Asian, Black, Hispanic, and American Indian donors. By 2002, NMDP had increased its donor base to over 4.5 million, and greatly increased the number of donors from minority groups. The number of API donors grew to 316,736, or over 8% of the total data base, exceeding the proportion of APIs in the total U.S. population (4%).[21] As one of its recruitment strategies, the NMDP created a new organization, Asians for Miracle Marrow Matches (A3M), to diversify the bone marrow donor database and increase access to marrow donors for Asians and Pacific Islanders (API). A3M’s message was ‘‘Asian

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patients need Asian donors.’’ The targeted API communities included Chinese, Filipino, Japanese, Korean, South Asian, Thai, and Vietnamese living in the counties of Los Angeles, Orange, Riverside, San Bernardino, and San Diego. By 2002, not only had the number of registered API donors increased, but more API patients were receiving bone marrow transplants. Nearly one in five of the API donors in the NMDP database was recruited by A3M. This success was largely due to A3M’s knowledge of languages, cultures, and strategies appropriate to its target population. Based on this experience, A3M found that the recruitment of potential donors was more successful when the recruiter was from the same racial/ethnic, linguistic, and/or cultural group. Asians for Miracle Marrow Matches also found that some subgroups within the overall Asian and Pacific Islander populations needed more assistance than others with obtaining bone marrow donations, not only referrals for matching donors, but also significant patient support. When API patients were merely referred to the mainstream health care system, they encountered many cultural and linguistic barriers, and returned to A3M to seek various types of support. A3M staff found that Korean and Vietnamese patients seemed especially reluctant to talk about their disease because of cultural norms, and were least likely to ask questions of the physicians treating them. It was also challenging to find a way to translate and explain medical terminology associated with cancer, e.g., chemotherapy, into these two languages. And these patients needed more assistance with information about insurance, treatments, side effects, and survival rates. Finally, there were more pronounced family difficulties in dealing with anxiety, sadness, and fear of death in these two groups. In 1999, in response to these needs for more culturally sensitive and appropriate support for API patients, A3M created the Culturally Appropriate Patient Support System (CAPSS), a two-year extended program for Korean and Vietnamese leukemia patients, with a grant from The California Endowment. CAPSS became one of the first programs in California to be based on a model of linguistically and culturally appropriate educational outreach and recruitment for the API community. The goals of the CAPSS program included: 1. 2.

Develop and implement patient services, information and emotional support. Increase the awareness of the need for culturally appropriate patient support services within the Korean and Vietnamese American communities in the Los Angeles and Orange County areas.

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Measure the effectiveness and utilization of the services provided by accounting for the number of patients served and the number of services utilized by the patients.

The Culturally Appropriate Patient Support System was designed to be a culturally competent program. One definition of a culturally competent program is that it is ‘‘characterized by acceptance [of ] and respect for difference, continuing self-assessment regarding culture, careful attention to the dynamics of difference, continuous expansion of cultural knowledge and resources, and a variety of adaptations of service models in order to better meet the needs of minority populations.’’[22] Actions that are likely to encourage cultural competency include hiring unbiased employees; seeking advice and consultation from the target community; deciding what can and what cannot be provided; and engaging in a ‘‘continuing process of growth in knowledge, experience, and understanding of individuals, groups and systems, which translates into higher quality of service.’’[4] Another way to gauge the cultural competency of a program is by locating it on a six-point scale of increasing cultural competency[23]: 1. 2. 3. 4. 5. 6.

Mainstream agency providing services to Asians without bilingual or bicultural Asian staff or programs. Mainstream agency providing services to Asians with bilingual/ bicultural Asian staff but no special programs. Mainstream agency providing services to Asians with special focus programs for Asians and bilingual/bicultural services. Mainstream agency providing billingual/bicultural services within the Asian community, e.g., through a satellite clinic. Asian-community agency providing services to all Asians. Specific Asian cultural group providing services to their own Asian population (they develop their own programs).

Following the sixth point above, CAPSS was developed to work with Korean and Vietnamese leukemia patients, the two groups most in need of assistance. CAPSS project staff included a licensed clinical social worker, a bilingual Korean-English case manager, a bilingual VietnameseEnglish case manager, and a Fund Development Director. The two case managers were recruited to identify leukemia patients needing support and to provide services. Case management activities included providing interpretation services for patients in health care settings; translating written materials from English; disseminating translated materials to the community; and reaching out to the health care providers. Housed

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in the Little Tokyo Service Center in downtown Los Angeles, at the headquarters of A3M, CAPSS encouraged Korean and Vietnamese patients to use any and all of their services as frequently as needed to find information and support during their search for a bone marrow donor and before and after the bone marrow transplant. One of the earliest case management models for practitioners working in multi-cultural communities was provided by the Office for Substance Abuse and Prevention.[24] The specific case management model adopted by CAPSS for use in API communities was a comprehensive needs approach. This approach assumes that services need to address not just the one issue of bone marrow transplantation, but rather a wide range of patient needs, especially for persons who are recent immigrants or refugees.[25] Persons from API groups, especially if they are recent immigrants or refugees, may not be able to differentiate between different U.S. health care systems (local, state, federal, public, private, nonprofit), and may expect formal helpers to deal with a variety of problems. Their needs are usually economic as well as emotional, and may range from the mundane to the specialized, including such things as help with applying for a driver’s license, using public transportation, opening a checking account, taking classes, looking for a job, and the like, as well as obtaining treatment for leukemia. In order for case management to work in API communities, and to establish rapport with API patients and their families, the case manager must be someone who is fluent in the language and culture of that particular Asian community. Case management, therefore, means more than just a referral service. It requires the case manager to assess the strengths and weaknesses of the patient; to learn about the patient’s support systems and networks; and to use an evaluative framework to gauge which services are most needed. The case manager often learns about a patient’s needs through keen skills of observation of nonverbal communication rather than from straightforward questioning, as direct questions about personal matters may be considered impolite. APIs are more likely than whites to communicate through nonverbal behavior, context, and cues that require shared experiences, history, and culture for proper understanding. For example, APIs from cultures with ‘‘hierarchical social structures [tend to] revere authority figures,’’ and do not explicitly question or disagree with a high-status professional such as a physician.[15] Nodding the head up and down among [APIs] means ‘‘I hear you speaking.’’ It does not signal that the listener understands the message nor does it suggest that he or she agrees; however, because disagreeing would be impolite, head nodding is used.

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In contrast, South Asians signal that they have heard what has been said by moving their heads in a quick, horizontal, figure-eight pattern.[4] A health care provider who was unaware of this meaning might assume that an API patient was indicating understanding, agreement, and compliance with a diagnosis and treatment regimen, compounded by the absence of overt questions or disagreements. Due to the depth and scope of the problems encountered by API patients with limited English proficiency, the concept of networking was incorporated into the case management approach adopted by CAPSS. This networking not only referred clients to formal social services agencies, but also to informal support networks such as churches, schools, self-help groups, cultural associations, and so forth. A study of Koreans found that the majority of health information was obtained from family and community sources.[7] A3M staff recognized that Asian cultural values, e.g., respect for persons of authority, could lead to a lack of information for patients who do not feel it is appropriate to ask questions of physicians. The idea of seeking a ‘‘second opinion’’ is not at all understood, as it is assumed that the primary doctor knows what is best for the patient. By referring API leukemia patients to networks of friends, relatives, neighbors, ministers, or other cultural and language-based associations in the community, the patients were provided with a rich and relevant source of information and support for negotiating with basic aspects of the health care system that are generally taken for granted by most mainstream (nonculturally competent) service agencies. Some other elements, including peer mentoring, an email exchange program, and an electronic bulletin board to facilitate national network support, were developed later over the two years of the project.

EVALUATION How well did CAPSS meet its three goals during its two years of operation? It is not easy to answer that question. A study conducted by A3M at the conclusion of the CAPSS project provides some evidence of success. The evaluation was carried out by an employee of A3M, who was also pursuing a graduate degree. The data for the evaluation were obtained from a comparison of pre- and post-service questionnaires filled out by patients; detailed, in-person interviews with case managers and other CAPSS staff; telephone interviews with agencies contacted by CAPSS; and a review of the documentation of CAPSS’ activities over the

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two years of the project. The number of patients and staff involved was not sufficiently large for a quantitative analysis using statistical tests to be conducted; rather, a qualitative content analysis was performed. In the following sections, the achievements of CAPSS are addressed in the three key areas of (1) developing and implementing patient services, information, and emotional support; (2) increasing the awareness of the need for culturally appropriate patient support services within the Korean and Vietnamese American communities in the Los Angeles and Orange County areas; and (3) measuring the effectiveness and utilization of the services providing by accounting for the number of patients served, and the number of services utilized by the patients.

Goal 1. Developing and Implementing Patient Services, Information, and Emotional Support There were four separate activities that constituted the development and implementation of patient services, including (a) interpretation and patient advocacy; (b) translation of information and patient education; (c) patient and family support groups; and (d) individual and/or family counseling by a psychotherapist. Patients using CAPSS’ case management and networking reported that the most important services were assistance with health insurance, interpretation, translation of information about treatment options; counseling and therapy, and conversing in one’s own language. Having a case manager from one’s own ethnic group and receiving social support were also highly valued aspects of the services provided. The success of CAPSS’ services was attributed to the fact that the needs assessment of the Korean-American patients was based on a general knowledge of culture that could anticipate unexpressed questions, based on a highly integrated system of beliefs and values, as well as attitudes toward the mainstream health care system.

Interpretation and Patient Advocacy Interpretation services and patient advocacy were a major component of the CAPSS program. These services played an important role, since many API patients were not proficient in English and had difficulty communicating about their health care problem. Korean patients who participated in CAPSS’ programs felt that differences in language often prevented them from getting the treatment they required. Even if they

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spoke English, they had difficulty understanding what the doctor was saying about the illness, and sometimes experienced confusion over the meanings of words, or the subtle nuances of nonverbal behavior. Patients wanted to have information explained to them in their own language, in culturally appropriate settings, with case workers from the same ethnic group. CAPSS workers noted that they often needed to explain the urgency of seeking treatment immediately; to help with the frustration with a prolonged course of treatment; and to overcome the hesitancy of patients to reveal the herbal remedies they were taking along with Western medicines. The Culturally Appropriate Patient Support System provided interpretation services to API leukemia patients primarily for the purposes of obtaining financial assistance; arranging patient discharges; certifying home care instructions; making and changing appointments; answering questions about medications; obtaining information about patient status; and participating in grief counseling. Twice as many interpretations were performed over the telephone (63%) as in person (37%). While the interpretation services were highly rated by patients, there were always more demands for these services than could be delivered by the single Korean case worker. This sometimes caused delay in the provision of interpretation services to some patients, especially if a face-to-face meeting was required. However, patients did not gain much experience in the practice of ‘‘self-advocacy,’’ i.e., addressing issues surrounding their illness with physicians. The short duration of the program did not have much effect on long-held cultural values of respect for authority and feelings of helplessness in the face of life-threatening illness. Patients relied on the case manager to be assertive on their behalf, rather than learn a new set of skills for negotiating the health care provision system. CAPSS’ application of the case management approach provided relatively short-term benefits for the patients but did not result in long-term behavioral changes.

Translation of Information and Patient Education The Culturally Appropriate Patient Support System translated materials into Korean using the method known as back-translation to ensure accuracy. These materials were especially important for Korean patients at the City of Hope transplant center. In conducting patient education, CAPSS staff found that in some API cultures there is a negative stigma associated with contracting cancer, including leukemia. A diagnosis of a life-threatening illness may

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be construed as a form of punishment for some dishonorable conduct. Some patients with this diagnosis feel ashamed or guilty and keep themselves apart from others. They may not know they need to seek timely medical assistance or they may be reluctant to use unfamiliar Western medical treatments. Although only a few Korean patients responded to both pre-service and post-service questionnaires, it was noted that the responses to the post-service questionnaires were much more detailed and complete than the responses to the pre-service questionnaires. In the post-service questionnaires, Korean patients who had used CAPSS’ services showed an increase in their knowledge about the illness compared to before contact with CAPSS. Improvement was seen in knowledge of how to find a compatible bone marrow donor; of the process of bone marrow transplant; and of the importance of medical, insurance, financial aid, and patient consent forms.

Patient and Family Support Groups The City of Hope in Duarte, California, provided meeting space for support groups formed for Korean patients and their families that met for 10-week cycles. The purpose of the support groups was to give the patient the experience of being among friends, family, and others from the same ethnic group who were all struggling with similar issues related to leukemia. The bilingual, licensed psychotherapist who conducted the sessions went through a course of cultural training in preparation for the weekly sessions. Positive comments made by participants included: – – – – – – –

It was helpful meeting other Korean-Americans. Learning about stress management was helpful. Learning new information about the disease was helpful. The groups consoled me. I continued meeting with others in the group outside of the sessions. Being ill in a foreign country is very difficult. Knowing that there are others like me helps me to cope.

The Culturally Appropriate Patient Support System staff found that API patients could benefit from patient support groups that are comprised of persons of the same linguistic and cultural or ethnic group, which lessen the fear that people from other groups will not understand their feelings. One unexpected development that surfaced

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during the group sessions, however, was that patients at the same level of development of the disease felt more comfortable together, whereas patients at different stages felt less comfortable with one another in the same group. This finding may help to increase the efficacy of future support groups for this population. An analysis of the pre- and post-service questionnaires completed by Korean patients revealed an improvement in feelings due to the opportunity to share information with other Korean patients. They were more likely to reveal how they were feeling, especially if they were lonely or isolated. In the post-questionnaire, patients were less likely to feel that the illness was a form of punishment, and reported reduced levels of shame and stigma associated with the illness. Patients revealed that they felt somewhat better about sharing news about their illness with people outside the immediate family circle, but were still hesitant to widen their social support group. In addition, feelings of not wanting to be a burden on anyone remained strong.

Individual and/or Family Counseling by a Psychotherapist There was less success with the bilingual Korean therapist contracted by CAPSS to provide individual counseling to patients. In Korean culture, personal issues are not discussed with people perceived as strangers or outsiders. Since the therapist was not seen as part of the patient’s family, health care network, or support group, this service was not as successful as the group meetings.

Goal 2. Collaborative Relationships with Mainstream Health Care Providers In February 2000, CAPSS sent an introductory letter to 86 individuals and organizations, including bone marrow donor and transplant centers, leukemia centers, health care providers, and other API organizations. The outreach was deemed successful because of the increase in referrals of API patients to CAPSS after the mailing. In addition, CAPSS developed collaborative relationships with mainstream health care organizations, such as the local City of Hope Medical Center and Fountain Valley Medical Center. Other organizational contacts included the transplant unit at the University of California Los Angeles (UCLA), Children’s Hospital of Los Angeles and Orange County, the Leukemia and Lymphoma Society, the Make-A-Wish Foundation, and

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Trinity Kids Care. CAPSS provided services such as simultaneous translation and interpretation for consultation with doctors in these organizations. In response, providers also learned about CAPSS, and in turn CAPSS was well-represented among the local network of patient referral services. CAPSS staff produced a protocol manual based on their experiences in the program, as well as on training provided by some of the organizations with which they interacted (e.g., City of Hope). As a result of these activities, more Koreans were inscribed in the A3M and national bone marrow donor databases, more Koreans were directed to mainstream medical care facilities, and a new network of patient contacts was developed for the Korean community.

Goal 3. Measuring the Effectiveness and Utilization of CAPSS Services The specific number of health care services utilized by CAPSS’ patients was not available, but there was information on the number of patients and families served. When CAPSS began in the Korean community, its goal was to serve a minimum of 50 patients and families between 1999 and 2001. That goal was exceeded, with 27 served in the first year and 61 in the second year, for a total of 88 patients and families. This increase from the first to the second year was attributed to the outreach of the Korean CAPSS worker to mainstream health care organizations and to other API organizations. An unanticipated development was that requests for services were received from patients outside the target area of Los Angeles and Orange Counties. Both patients and leukemia-related organizations from as far away as the states of Alaska, Hawaii, New York, and the countries of Paraguay and Korea contacted CAPSS, mostly through e-mails.

PROBLEMS ENCOUNTERED Along with the successes, there were also problems. One of the most pressing was the high rate of staff turnover. The reason that only the Korean experience is reported here is that many fewer activities were carried out in the Vietnamese community due to staff turnover. Some of the problems that contributed to the high rate of turnover included the minimal staffing of the program which caused the case managers to be overworked; a lack of preparation of staff for the high stress of this job;

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and the lack of training for staff for dealing with patients’ emotional concerns and helping families to deal with death, grief, and loss. Other challenges that should be taken into account in future community-based, case management programs include designing adequate record-keeping and data collection measures into the program; using program evaluators from the same ethnic and linguistic groups as the patients; providing culturally appropriate services and avoiding those that have little relevance in the culture; and carefully considering the balance between advocating for the patient in the short term and teaching self-advocacy skills for the long term. Also, the institutionalization of these culturally competent programs after the funding for demonstration or pilot projects runs out remains a challenge for many organizations.

CONCLUSIONS The CAPSS program provides one example of a model of culturally appropriate programs for the Asian/Pacific Islander community. The need for such social support services and case managers to help limited English proficiency patients cope with illness issues such as the communication of the diagnosis, decision-making, treatment, pain control, emotional and social impacts, coping strategies, social support, and end-of-life concerns, is clear. More research remains to be done on a larger scale of the efficacy of developing community-wide approaches to improve prevention, diagnosis, and treatment of leukemia for Asian and Pacific Islander populations.

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