In 2000, Black individuals represented 12.8% of the United States population (U.S. Bureau of the Census, 2001). In 1996, Black older adults represented 7.9% of individuals 65 and older (American Association of Retired Persons [AARP], 1999). The population of Black older adults is growing at a faster rate and is poorer than the population of White older adults. In 1992, 34.5% of older (age 65 to 74 years) Black women, compared to 10.3% of older White women, were living at or below the poverty level (Hobbs fit Damon, 1996). These facts have important implications for nursing practice and for nursing research.
Until recently, researchers failed to recruit Black older adults and their caregivers into studies of health issues in sufficient numbers to draw ethnically valid conclusions. Yet, there is much to learn about the management of health problems from ethnic minorities such as Black individuals (Ketefian & Redman, 1997). For example, Black individuals have developed intricate social networks to care for their elderly family members that are cost effective, efficient, and minimize the use of formal health care delivery systems. At the same time, Black caregivers report lower levels of depression than White caregivers (Haley et al., Î995). The very goal of modern health care, to deliver quality care with efficiency and low economic impact, may be just what the Black population has been demonstrating. Health care policies that pay professional caregivers of older individuals and the sick, but ignore family caregivers, fail to acknowledge or support the preference of Black caregivers for informal, home-based care of family and group members. With cost cutting in health care and a large aging cohort, it is important for nurse researchers to begin to uncover mechanisms leading to different outcomes among Black and White individuals to make more informed decisions in providing care to older adults and their families.
Increasing the participation of Black individuals in health research is one way to ensure they enjoy the benefits of evidence-based care and improved health status. Therefore, this report describes a culturally responsive approach to the recruitment and retention of Black urban individuals into health research. Examples are drawn from the Cardiovascular Responses of Black Female Caregivers Study whose purpose was to identify cardiovascular responses of Black female caregivers and noncaregivers to caregiving and other competing demands relative to the individual's resources as measured during a 24-hour period at four 1year time intervals.
The study goal was to efficiently recruit a population-based representative sample of 195 caregivers and 195 noncaregivers. To accomplish this, the research team obtained a data tape prepared by the Health Care Financing Administration (HCFA) containing the names and addresses of more than 48,756 Black older adults living in Cuyahoga County, Ohio. The data served as a sampling frame from which a probability sample of Black older adults was drawn. Older adults were called and asked to refer the recruiters to their current caregivers or noncaregivers - those who would care for them if they needed a caregiver in the future.
Wenger's translation process model (Wenger, Speroff, & Packard, 1993) was used to structure the recruitment process. This mode! focuses on the search for cultural meaning as a means of understanding a person's symptoms. The steps of the model include:
* Assessment of the culture of the target population's community with a focus on the meaning attributed to the health problem, its treatment, and related research.
* Analysis of the fit and misfit of the target population's cultural context and the research team's plan.
* Restructuring of the research team's plan based on the cultural assessment.
* Negotiation between the target population community and the research team regarding culturally acceptable study approaches
Steps of the model (Figure) will be used to guide the organization of this manuscript.
ASSESSMENT OF SOURCE CULTURE
To assess the source culture (Step 1), literature reviews, focus groups, advisory boards, and pilot studies were employed to determine the target population's research experience and place the health problem of hypertension in a relevant context. The appropriate therapeutic approach, terminology, and communication format were pinpointed in this step. Ethnographic surveys provided lists of relevant ethnic organizations, media sources, key community members, community services, and prime research sites.
The community survey revealed preferences of Black older adults for particular research strategies. They preferred research relevant to them personally or relevant to their family or to their community. They also wanted the research to provide a financial benefit to them, to be convenient, noninvasive, and not to be sponsored by the government. Other researchers have also reported this (Picot, Strother, & Humphrey, 1995). Source culture data revealed that tailoring the research directly to Black older adults would help to support recruitment and avoid problems of retention.
Barriers to participation were defined as culturally uninformed knowledge, language, or practices that prevented a person, family, or group from participating in research. Black individuals tend to shun health care research because of their knowledge of past research abuses, such as the Tuskegee experiment (Malkovich, 1992). Further, Black individuals frequently use culturally specific terms for disease processes. For example, Alzheimer's disease may be called "old timers disease" or "being senile" (Picot, Stuckey, Humphrey, Smyth, & Whitehouse, 1996) and hypertension is commonly called "high blood pressure" or simply "high blood." If researchers do not know these terms, communication with potential participants may be impeded.
Personal ethnic identification is also complicated and idiosyncratic, and must be clearly delineated. In a recent study that recruited 393 Black and White caregivers, Black caregivers described their ethnic identity using six different words (Wykle, Haug, Namazi, & Taylor, 1992). Ethnic terms included "Colored," "Negro," "Black," "Afro American," "African American," "American," "Jamaican," and "Brown." Some participants were offended if not referred to by their own descriptive word choice and they refused to go further with screening questions until the desired ethnic term was used.
Poor understanding of health care research also can make it difficult for participants to understand the language, methods, and practices of the researcher (Hughes, Fenton, Hiñe, Pilgrim, & Tibbs, 1995). Participants with limited financial resources may decline participation if participants must bear even a small proportion of the costs of the research, such as bus fare, parking, or lost work time to participate. Lack of transportation to research sites has been shown to completely eliminate the likelihood of participating for some (Paskett, DeGraffinreid, Tatum, & Margitic, 1996). Further, if members of an ethnic group are focused on survival issues, health promotion and prevention studies may have little current relevance for them.
Figure. Translation process model.
Participation in research can be enhanced if a study is conducted in the homes and neighborhoods of the target population. Recruitment advertisements should be placed in their media, and in places they frequent. Beauty shops and barbershops, bowling alleys, laundromats, corner grocery stores, drug stores, malls, and homes all have been shown to provide more culturally accessible location to conduct research in the Black community than the often uncomfortable and intimidating environment of research institutions (Whelton et al., 1996). Further, data collectors, advisory board members, endorsers, and even the investigators optimally should be of the same ethnic background as participants (Paskett et al., 1996). However, though preferable (Mouton, Harris, Rovi, Solorzano, & Johnson, 1997; Reese, Ahern, Nair, O'Faire, & Warren, 1999; Roberson, 1994), matched ethnicity may not always be possible (Thompson, Neighbors, Munday, Sc Jackson, 1996).
ANALYSIS OF FIT/MISFIT
Assessment of the source culture for this study revealed several areas of potential fit and misfit. First, the prevalence of high blood pressure is much higher among Black individuals than in White individuals. As Black women age from 18 to 65, the prevalence increases from 9.6% to 82.9% (Douglas & Wright, 1992). This suggested a significant fit between the goals of the study and the application to the population.
Potential misfits were:
* Distrust between the Black community in Cleveland and Case Western Reserve University (CWRU) because of its prior history of White-only college admissions.
* Preference of Black older adults for data collectors of the same ethnicity as themselves.
* The prevailing desire of Black individuals for noninvasive research protocols (Malkovich, 1992; Picot et al., 1995).
* The need for language specific to participants' culture.
* The participants' desire to feel valued as active informed participants.
These factors represent discontinuity with the original study plan because not all screeners were Black individuals, the study protocol required venipuncture and anthropométrie measurements, and no culturally specific mechanisms had been designed to acknowledge participant value in the study.
RESTRUCTURING OF STRATEGIES
Multiple trust-building strategies are required when working with ethnic minority older adults (Gauthier & Clark, 1999). A letter on HCFA's stationery from a HCFA administrator to the older individuals on the list used as the sampling frame stated that the elderly individuals did not have to identify their caregivers or potential caregivers when called. They were also informed that they could decide not to participate without experiencing any negative consequences. Because HCFA is the government agency that administers the Medicare program, older adults were informed that the decision they made regarding participation would not in any way affect their Medicare benefits.
Another letter from the study director written on study stationery emphasized past under-representation of Black women in health research, as well as the importance of identifying cardiovascular and hypertension risk factors. Endorsement letters from a local United States Congressman, an influential and visible Black minister, and the chief executive officers of both the Urban League of Cleveland and the American Red Cross Cleveland Chapter, were obtained (Diekmann & Smith, 1989).
Despite these efforts, review of the screeners' calling notes to older adults revealed abrupt disconnections, refusals to provide the name of the caregiver or potential caregivers, and requests that the screener call back after they had consulted with their family. In addition, when caretakers were initially contacted, some women were hostile to screeners and expressed their anger at being contacted after referral by the elderly individual. Participation was made more convenient by offering to conduct the interview at the participant's home and by keeping the interview to 2 hours (Killien & Newton, 1990).
Only a few weeks before the planned screening of potential participants for the caregiver study, a week long series of negative articles about abuses of informed consent appeared in the local newspaper. Because some Black individuals view signing an informed consent as relinquishing their autonomy and legal protection for the doctor, the research team needed to make an immediate response to these articles (CorbieSmith, Thomas, Williams, & MoodyAyers, 1999) to reduce the potentially negative effect of the series on recruitment. To address the distrust of the potential participants, articles explaining the study appeared in both the Black community newspaper and the major newspaper of the greater Cleveland metropolitan area (Bonner & Miles, 1997; Burrus, Liburd, & Burroughs, 1998; Moody, Gregory, Bocanegra, & Vasey, 1995). These articles featured the principal investigator (S.J.F.P.), who is a Black individual, in a photograph with a Black woman posing as a participant, having her blood pressure monitored. The principal investigator also appeared on Sunday morning television shows likely to be viewed by the target population.
Researchers have reported that Black women showed higher cooperation rates when participants, researchers, and interviewers were concordant on race (Mouton et al., 1997; Reese et al., 1999; Roberson, 1994). The matched ethnicity of the principal investigator in the caregiver study was advertised to suggest that the leader of the project would have potentially similar needs and concerns, and would understand the caregivers' situations. However, it was even more important to enlist Black female nurses as data collectors because they would have the most intimate and prolonged contact with participants. Again, it should be noted that the initial screeners of the elderly individuals were not all Black individuals. Whether this was a factor in some refusals to make referrals is not known.
The analysis of fits and misfits revealed concern that participation in the research on caregiving would be invasive physically, with venipuncture requirements and anthropométrie measurements, and socially, because of demands on participants' time and privacy. This was also demonstrated in the Hughes et al. (1995) study. While previous research indicated that participants tolerated ambulatory blood pressure monitoring (ABPM) cycles of every 20 minutes (Van Egeren, 1988), cultural source data for the current study revealed a lack of comfort with technology. Thus ABPM was made less frequent and use of a palm computer diary was removed from the protocol.
King, Oka, and Young (1994) also reported the need to decrease ABPM. In addition, the venipuncture requirement was reduced to one time during the study. However, even this limited invasive procedure was not acceptable to those who were aware of the Tuskegee Experiment, a finding supported by other researchers (Corbie-Smith et al., 1999; Malkovich, 1992; Reese et al., 1999). Similar to potential participants in previous studies, these potential participants had such a fear that a harmful substance would be injected into their bodies that they could not be converted into participants (Corbie-Smith et al., 1999; Picot et al., 1995).
In an attempt to retain participants who were wary of venipuncture, a complete report of blood results would be shared with each participant and her health care provider upon request. However, fewer than 10 of the participants in the study asked for a complete report, although many more had abnormal results indicated to them in the preliminary report that was sent to all participants. This conflicted with findings of the African American Study of Kidney Disease and Hypertension pilot study, in which more than 90% of the Black participants reported benefits from both the monitoring of their condition and the availability of test results (Kusek et al., 1996).
The importance of using appropriate language with potential participants was evident from the most contacts with older adults and potential participants. A subcontractor had been employed to screen the elderly individuals by telephone to identify and then call and recruit caregivers and noncaregivers. Scripts were developed for these purposes, but were quickly noted to have problems, which had not been obvious to the research team during development For example, many of those called voiced resentment about the particular reference to race. Responses included, "I am not from Africa, don't call me African American," "I am biracial," WI am American," and "What is the difference between Afro American and African American?" Those older than age 65 preferred the terms, Negro or Colored; those younger than age 65 were more comfortable with African American. To get beyond the race issue, the high prevalence of hypertension among the Black population was emphasized as the only reason for asking about the race of potential participants.
Despite pilot testing the screening script, several modifications were required to ensure that only Black women who met the inclusion criteria were recruited. Data from the cultural assessment were used to design solutions to this problem. Screeners learned to emphasize the value of participants in the research process, and to ask for the best days and times to call. This information was inserted into telephone call notes to be used later by the registered nurse (RN) data collectors.
Screeners also began to emphasize the relevance of the study and the convenience of participation in the participant's own home setting, while explaining the blood pressure monitor and the requirement for venipuncture. The team realized that the information given in the screening process was complicated and could be intimidating to an individual with little health care experience. When potential participants were asked if they had any questions about what they had been told, most often they indicated that they did not. Yet prospective participants often did not understand the protocol and frequently refused participation when the RN data collector called to make an appointment.
To improve the rate of participation, an open-ended question related to the participant's understanding of the protocol was added to the screening questionnaire. Often misunderstanding stemmed from lack of knowledge about research terms (e.g., control group) by both older adults and potential caregiver or noncaregiver participants. ShaversHornaday, Lynch, Burmeister, and Torner, (1997) also reported the need for clarification of research-related terms. Many women thought they were not eligible for the study if they did not have high blood pressure or were not caring for an older adult.
Millon-Underwood, Sanders, and Davis (1993) reported similar findings. Responses to the open-ended question allowed identification of misunderstandings and provided an opportunity for the screener to clarify information related to the protocol. After the open-ended question was added, the total rate of refusals dropped from 38.37% to 24.32%. When potential participants were fully informed and expressed intent to participate in the study, the expressed intent became the best predictor of study completion - a finding also reported by other investigators (Mandelblatt, Traxler, Lakin, Kanetsky, & Kao, 1993).
A significant discovery from the assessment of the source culture was the potential participants' expressed desire to be valued, informed, and active in the study. To demonstrate participants' value to the study, grocery store gift certificates, tote bags, and key chains were offered for completed interviews, promptly scheduled appointments, or when remonitoring was necessary.
The incentive increased with each of the four times when the data were collected. The gift certificates were well received by all the participants. The Thanksgiving and Christmas holidays brought calls from participants requesting to be interviewed before the holiday date to secure the gift certificates. This reflected the income levels of many of the participants and their family members.
The research team sought to demonstrate appreciation for participation whenever possible, and to foster a sense of pride in the women for participating in an important study. A tote bag decorated with the study logo, given to all participants, was very popular. Participants often approached members of the research team also carrying the tote bag. A serendipitous benefit of the tote bag was the boost of morale created in the research team, as well as the study participants. It also served as an advertisement for the study.
During the Christmas holiday, computer-generated cards, along with a key chain decorated with the study logo, were sent to each participant. The card had a picture of the research team on the front, was individually signed by each team member, and expressed the best wishes of the team to the participant and family. The team was careful to identify those participants who had indicated their non-Christian religious preferences and altered the card sent to them to include an appropriate, respectful seasonal greeting. Many participants sent holiday cards in return with personal letters and thank you notes.
An informative newsletter was created during the first of four data collection points to introduce participants to the research team, the study's progress, and to provide another venue for health information. The newsletter also included the cardiovascular profile of the participants. This information mirrored the individual profile sent to each participant after the Time 1 interview, allowing each woman to compare herself to the group. Participants were also sent a frameable certificate congratulating them for completing Time 1 data collection.
NEGOTIATION BETWEEN PARTICIPANTS AND RESEARCH TEAM
As the study progressed, continued negotiations were necessary. Ongoing assessment indicated the importance of avoiding high-pressure recruitment approaches. Participants who had been left multiple recruitment messages by the screeners later refused to be interviewed in the field. Initially, the screeners made up to 12 calls to reach a potential participant by phone. Over time, it became clear that the more calls it required to reach a woman, the more likely she was to be difficult to reach by the data collector. As a result, screeners reduced calls to six attempts. The best screening and recruitment strategy was active listening. It was clearly more important in the recruitment process than the particular words chosen for the script.
After initial recruitment efforts were completed, the research team turned its focus to retention of the participants. Like recruitment, retention is a synergistic process, but it requires a greater investment of resources (e.g., human, time, financial) than recruitment. Restructuring of the data collection protocol was necessary after the data collectors had assessed the needs and preferences of the participants. In addition, the pager number of the RN (later included on business cards) was given to participants for use during the 24-hour monitoring period if they had questions or concerns.
Data collectors were available for appointments with the participants every day of the week. Additional grocery gift certificates, used as incentives, were offered to participants if they could schedule and keep an appointment with the RN within 2 weeks of the RN's initial call. This strategy was very successful in facilitating timely data collection. Because the RN could not predict the exact time of arrival at the participant's home, nonfasting venipunctures were used. As a result, low-density lipoprotein cholesterol was eliminated from the panel of tests.
Although competing demands on participants' time were taken into account early on, further efforts were needed. In one such effort, the team offered to provide caretakers for children of the participants or for their elderly care recipient, but participants refused this service. The length of the interview, as well as the weight and size of the blood pressure monitor, were reported as reasons for refusing to continue to participate. Therefore, the questionnaire was condensed, and the interview shortened for data collection points after Time 1. The interview protocol was also administered during 2 days to lessen the burden of questioning for 2 consecutive hours. Holidays and the summer vacation period were associated with a higher rate of refusals, so data collectors offered to call after the busy season was over.
A few participants were not comfortable with interviewing in their homes. These women were interviewed at the research facility or in another location such as a local mall or community college and paid for their travel cost. Some women complained of the frequency of the ABPM, tightness of the blood pressure cuff, and irritation of the cuff's fabric. Data collectors customized the ABPM frequency to accommodate this concern and applied Stockinet® (3M, St. Paul, MN) to decrease fabric irritation. Unfortunately, cuffs were only available in sizes up to 50 centimeters, therefore women whose arm circumference exceeded 50 centimeters were not eligible to participate.
At times, at the request of the family, the RNs took the blood pressures and weights of all the family members present, in addition to the participant. The RNs took every opportunity to raise the consciousness of the women and their family members about their health. Although these activities may represent a conflict in the researcher and clinician role, these strategies were purposely used to address issues raised in the source culture assessment.
Participants often confided in the RNs and revealed a need for community resources that might lessen their caregiving demands. The nurses carried a directory of resources, and because they were also members of the Black community, they were able to suggest resources for the participants. During one interview, a participant had an extremely high, potentially dangerous blood pressure. The nurse called 911 to determine the need for transport to an emergency department. Although they did not represent a majority of the participants, many women with a high blood pressure reading during the interview appeared not to realize that their blood pressure was high, or they did not realize that their medication was not controlling their blood pressure. Many did not engage in regular health screening or visits to a health care provider, despite their knowledge of their health risks.
A local radio station noted for its programming oriented to the needs of the Black community featured the research team on a Sunday morning call-in program. Postcards were sent to all participants to announce the time and date of the program, and team members who would be interviewed on the air. The show featured the principal investigator, the data collectors, the office staff, and one unnamed participant who volunteered to be interviewed. The radio station received positive feedback.
An important strategy was making contact with participants 6 months after their last interview. This aided in maintaining not only awareness of the study but also participants' sense of value. A telephone interviewer read a short script
Though the follow-up calls were useful, having différent staff members make participant contacts was neither efficient nor effective. Phone contact from an individual other than the RN data collector appeared to confuse participants. The research team therefore decided to designate the RN data collectors as case managers, handling all contact with participants, including follow-up calls; sending out test results; and signing and sending birthday, sympathy, or holiday cards.
Although modifications were made to address participants' concerns, some women refused to continue participating, indicating that they had changed their minds about participation. An exit interview was initially designed to help the team understand the burden of the protocol (diary and ABPM interference with activities and sleep) and feelings leading to refusal. However, it was not clear what factors influenced the decision to drop out of the study. Most women who left the study seemed to give socially desirable answers to questions related to the protocol's burden. Some women expressed a need to consult her partner about further participation.
The refusal rates steadily as the recruitment and retention strategies described above were implemented. In November 1998, the refusal rate for caregivers was 21.43%, and for noncaregivers 26.42%, for a total refusal rate of 24.21%. As of mid-May of 1999, the refusal rate dropped to 15.06% for caregivers, and 21.64% for noncaregivers, accounting for a total refusal rate of 18.82%. However, it is difficult to determine the relationships between the research team's use of the translation model as a framework for designing efficient and effective recruitment and retention and the refusal rate. If the efforts of the team have made it possible for 20 participants to remain in the study, who might have otherwise dropped out, the efforts were considered successful.
The applications to nursing practice from this study are numerous, however, two particular concerns are described in this article. First, the number of Black older adults is growing, and many elderly women are poor. Black older adults of both genders have an increasing number of chronic conditions. Because of their general distrust of the medical community, they neither seek medical care, nor are inclined to panicipaté in research studies. Both of these trends are worrisome. Many present to health care providers when the potential benefit of early interventions has been lost. Lessons learned in this study can be applied to engaging Black individuals in medical care, as well as recruiting them into research studies. More information about the consequences of living with unmanaged chronic conditions, as well benefits of participation in research, needs to be made available through their media and in locations frequented by this population.
Secondly, cultural nuances of Black women in a research setting are described. However, Wenger's model might also be used, but in clinical practice with patients from other ethnic groups. A source culture assessment, determination of fits and misfits, and reorganization of incongruity between cultural behaviors and nursing interventions should occur with each group of patients cared for by nurses.
Nurses at the bedside might begin by determining if clinical practice guidelines are sensitive to various cultural differences. This would involve more than assuring that guidelines are translated in the native language of various ethnic groups. As in this study, careful consideration must be given to particular language, behaviors, or foods, as well as places members of the group frequent. Given the increasing number of ethnic groups in American society, sensitivity to cultural differences is important for all aspects of nursing.
Many of the strategies used successfully in other studies of the Black population were found to be advantageous in this study. In addition, an open-ended question to assess understanding of informed consent, an upper limit on the number of phone calls for recruitment, and the use of a case management model for data collectors increased the effectiveness of recruitment and retention. Successful recruitment and retention strategies for Black older adults and their caregivers require thoughtful preplanning, creative and flexible problem-solving, multiple strategies, and sensitivity to the cultural differences central to the participants. Despite the benefits of longitudinal design, there are many concerns the research team must consider to reduce the occurrence of missing data and to decrease attrition.
The translation process model provided a useful framework for designing recruitment and retention strategies and evaluating their success. The ability of the research team to respond flexibly and creatively to cultural and ethical challenges from the participant group made the difference between recruiting and retaining or losing participants. It is the responsibility of research teams to delve into the cultural consciousness of potential participants to ensure wider participation of all ethnic groups and the relevance of the research outcomes.
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