CHAPTER 1

El Centro de Evaluación at the University of Oklahoma 2000–2005: A SPNS Evaluation Center

To respond to the growing number of Latinos living with HIV/AIDS in the United States (Centers for Disease Control and Prevention [CDC], 2001) and the substantial increase in the Hispanic population in the region of the U.S. border with Mexico (Guzmán, 2001), the Health Resources and Services Administration (HRSA) funded the Centro de Evaluación at the University of Oklahoma School of Social Work as one of four HIV/AIDS Evaluation and Technical Assistance Centers in July 2000. The Center was funded through a HRSA Special Projects of National Significance (SPNS) grant under the U.S.–Mexico SPNS Border Health Initiative, also awarded to the University of Oklahoma in 2000. The primary goal of the Centro de Evaluación (also known as the evaluation center or the center) was to facilitate coordination of evaluation and to establish a framework for systematic data reporting activities among the five SPNS Border Health Initiative demonstration projects (located along the U.S.–Mexico border from San Diego, California, to Brownsville, Texas). In 2005, the center became a division of the Center for Applied Research of the University of Oklahoma.

Overview

This chapter presents census and epidemiologic data from both before and after the start of the SPNS project in 2000. This data informed the implementation of the SPNS Border Health Initiative. The remainder of the chapter describes the role of the evaluation center staff in promoting grantee partnerships that facilitated the development and implementation of the outcome evaluation.

The evaluation is described in three stages: beginning, middle, and end. The beginning stage consisted of the work involved in actualizing process and task goals. Process goals are the interactional human aspects of creating sound, functional team relationships. Task goals are the problem-solving work associated with various tasks to achieve the objectives of the initiative. The middle stage consisted of additional tasks, such as data collection, and activities associated with continued team building to realize evaluation oversight responsibilities. The final (end) stage involved administrative and operational challenges for evaluation center staff. It also included individual and team dissemination activities undertaken over the 5-year period to report on the work of the five SPNS projects. The chapter concludes with recommendations based on the experience of the evaluation center staff in its work with the collective project sites.

The original evaluation center was given the Spanish title Centro de Evaluación to emphasize the focus of the initiative, which was to evaluate the service outcomes of health care centers providing outreach and care for Spanish-speaking populations living along the U.S.–Mexico border, the majority of whom are of Mexican origin.

HISPANIC OR LATINO? Hispanics are not a homogenous group; their diversity is reflected in how people within the collective Hispanic group identify themselves by race or ethnic group and how they are referred to in the literature. Hispanic people not born in the United States, including people from Central and South American countries, tend to identify according to country of origin. U.S.-born Hispanics are more varied in their racial and ethnic identification. The terms Hispanic and Latino, which are assigned by the U.S. Department of Commerce for the purpose of collecting U.S. Census data, are not universally embraced by Hispanic subgroups. How U.S.-born Hispanics identify their ethnic or racial group may be a function of family generational history or their American education and identification with the majority White society. Among people of Mexican origin, Mexican American may be the preferred identification of second- or third-generation adults, but their offspring may identify as Chicano or Chicana, a term associated with youth activism of the 1970s and the civil rights movement (Curiel, 1995; Reich, 1989). Historically, Hispanic people from New Mexico have tended to identify with their Spanish heritage. Many families had land grants awarded during Spanish rule and trace their ancestors to the original Spanish settlers. They may refer to their ethnicity as Spanish rather than Mexican or Mexican American. Given the potential for confusion over ethnic identity, the term Hispanic is used throughout this document to refer to Mexican-origin participants who were either born in the United States or have Mexican heritage. Chapters use the term Hispanic or Latino according to the preferred usage in the service area being described.

 

TABLE 1.1. U.S. and Selected State AIDS Cases by Hispanic Ethnicity, 2003

State	New AIDS Cases
	N		%		Rate/100,000
	Hispanic	Non-Hispanic	Hispanic	Non-Hispanic	Hispanic	Non-Hispanic
Arizona*	166	448	21.9	78.1	9.8	11.8
California**	2,004	3,899	31.6	68.4	12.0	12.4
New Mexico***	50	59	46.6	53.4	5.2	4.3
Texas****	924	2,455	27.3	72.7	12.1	15.2
United States	9,168	35,795	18.5	81.5	25.2	14.1

*Derived from Arizona Department of Health Services, Division of Public Health Services, Office of HIV/AIDS, 2003a, p. 7.
**Derived from California Department of Health Services, Office of AIDS, HIV/AIDS Case Registry Section, 2006.
***Derived from New Mexico HIV/AIDS Epidemiology Program, 2004.
****Derived from Texas Department of Health, HIV/STD Epidemiology Division, Surveillance Branch, 2003, pp. 1, 5.

This chapter uses the term Hispanic to refer to people of Mexican origin, the primary participants in this SPNS initiative. Care providers in U.S.–Mexico border communities have the added challenge of distinguishing between Mexican nationals, naturalized U.S. citizens, and native-born Hispanic people to determine care eligibility. Participants in this project were required to be U.S. residents.

Establishing the Need for the SPNS Border Health Initiative

In 2003, an estimated 43,171 AIDS cases were diagnosed in the United States; 43,112 of those cases were among adolescents (age 13 and above) and adults (CDC, 2004). Census 2003 population data (U.S. Census Bureau, 2004) were used to calculate the total rate (14. 8 per 100,000) and estimate the adult and adolescent rate (18.7 per 100,000) of new AIDS diagnoses in 2003.

Racial and ethnic minority populations have been disproportionately affected by the HIV epidemic. Between 1981 and 1995, non-Hispanic Whites were the predominant racial–ethnic group among people living with AIDS (47 percent); over time, the proportion of cases among racial and ethnic minorities increased. Between 2001 and 2004, an estimated 157,468 people in 35 areas reporting to CDC were diagnosed with HIV/AIDS (CDC, 2006a). During the same period, non-Hispanic Blacks accounted for 50 percent and Hispanics for 20 percent of HIV/AIDS cases.

Higher fertility rates, lower age-specific death rates, and higher immigration rates account for population growth among Hispanics. Hispanics now constitute the Nation’s largest ethnic minority group. U.S. Census Bureau population estimates indicate that the Hispanic population grew 9.8 percent (compared with 2.5 percent for the U.S. population as a whole) between April 1, 2000, and July 1, 2002; 53 percent of the growth rate was attributable to net international migration, and 47 percent to natural increase—the difference between births and deaths (U.S. Census Bureau News, 2003). Higher population growth rates among Hispanics have been shown to have detrimental effects, including higher rates of poverty and higher levels of communicable diseases, including HIV/AIDS. Table 1.1 compares new cases of AIDS in 2003 for Hispanics and non-Hispanics.

Survival differences among racial and ethnic minorities might be attributed to late diagnosis and differential access to care. An estimated 252,000 to 312,000 people in the United States are not aware of their infection and their risk of transmitting HIV to others (CDC, 2006b).

Thus, one of the major goals of this initiative was to increase early detection of people infected with HIV to decrease new transmissions. All sites worked closely with their State health departments to coordinate HIV/AIDS prevention and treatment activities. Having access to epidemiologic data on sexually transmitted infections (STIs) was useful to grantees in planning outreach strategies targeting populations at risk for HIV/AIDS.

HIV/AIDS Epidemiology Among Demonstration Sites

The following five demonstration projects were part of the U.S.–Mexico SPNS Border Health Initiative and broadly represent the border region:

• Arizona Border HIV/AIDS Care Project (Tucson, AZ)
• San Ysidro Health Center (San Ysidro, CA)
• Camino de Vida Center for HIV Services (Las Cruces, NM)
• Centro de Salud Familiar La Fe (El Paso, TX)
• Valley AIDS Council (Harlingen, TX).

Table 1.2 describes STIs reported by participating States for 2003. The data show that the potential number of people at risk for HIV/AIDS (i.e., those who reported an STI) was higher for people diagnosed with gonorrhea and chlamydia. The data support the need for HIV/AIDS outreach in the form of education and HIV testing to lower transmission of the disease. Demonstration project sites used local census and epidemiologic data to support SPNS initiative applications. In most cases, rates of infection among people younger than age 18 in counties in project service areas were higher than those of their non-Hispanic White counterparts in respective State or national total rates.

 

TABLE 1.2. Cases of Sexually Transmitted Infections, 2003, by State and Service Area

State and Service Area	Gonorrhea per 100,00	Primary and Secondary Syphilis per 100,000	Chlamydia per 100,000
United States	114.7	2.5	301.3
State of Arizona*	64.1	3.3	229.7
Arizona Project Service Area	75.8	1.8	293.2
State of California**	73.2	3.7	330.9
California Project Service Area	65.5	3.6	346.6
State of Texas***	111.2	3.0	312.9
El Paso Project Service Area	40.3	16.7	330.3
Valley AIDS Council Project Service Area	20.1	14.4	307.1
State of New Mexico****	62.4	3.8	399.0
New Mexico Project Service Area	41.9	0.0	266.6

*Derived from Arizona Department of Health Services, Division of Public Health Services, Office of Infectious Disease Services, 2003b.
**Derived from California Department of Health Services, 2003b.
*** Derived from Texas Department of Health, HIV/STD Epidemiology Division, Surveillance Branch, 2003.
**** Derived from New Mexico Department of Health, STD Epidemiology Data, 2004.

Individual sites reported that the following 2003 State data were helpful in designing their SPNS initiative strategies:

• Arizona
  • In the 1990s, the incidence rate for AIDS decreased from 14.7 per 100,000 in 1990 to 8.0 per 100,000 in 2000; it then increased to 11.0 per 100,000 in 2003 (Arizona Department of Health Services, 2003a).
• California
  • Distribution of AIDS cases among Hispanics in California (31.6 percent; see Table 1.1) parallels the percentage of Hispanics in the State population (32.4 percent; Table 1.3).
  • In San Diego, Hispanics were disproportionately represented in new AIDS cases in 2003: 37 percent of cases versus 28 percent of the population (County of San Diego Health and Human Services Agency, 2004).
• New Mexico
• The proportion of new AIDS cases among Hispanics (46.6 percent) exceeds the State’s proportion of Hispanics (42.1 percent).
• A notable trend is the increase in people with AIDS age 40 and older, a group that constituted less than one-third of AIDS cases in the 1980s but nearly one-half of cases in the 2000–2002 period (New Mexico Department of Health, 2004).
• Texas
• Statewide, the proportion of AIDS cases among Hispanics increased from 20 percent to 24 percent between 2002 and midyear 2003 (Texas Department of Health, 2003).
• In 2004, AIDS cases along the 32 border counties represented 6 percent of total AIDS cases for the State. Hispanics on the border represent the majority of the State population (ranging from 76 to 95 percent) as well as of the number of new AIDS cases (190; AIDS Education and Training Centers National Resource Center, 2006).

Hispanics make up a greater proportion of the population in most of the counties in the service area than in the total population of the State in which the county is located (see Table 1.3). Given the population demographics of the region and the stigma associated with HIV/AIDS, it was anticipated that individual health care demonstration projects would encounter unique challenges that would require creative outreach and intervention strategies to overcome regional or local barriers to providing service and care.

One challenge, for example, involved providing health care in metropolitan and rural areas to indigent patients with limited English proficiency, some of whom lived and worked on both sides of the U.S.–Mexico border (i.e., transborder patients).

The initiative was designed to add to the body of knowledge about the size of the transborder population and to shed light on how they (and other border residents) utilize medical or alternative sources of care in Mexico and the United States. The study also explored the use of alternative care, namely, the use of informal care systems such as the indigenous health care providers referred to in the health literature as curanderas and curanderos, or folk healers (de la Torre & Estrada, 2001).

TABLE 1.3. Border Population, by State, Service Area, and Hispanic Ethnicity, 2003

State and Service Area Counties	Census Population 2003 Estimate (1)	% Pop. Change 1990-2000 (2)	% <18 Years Old 2000 (3)	% Hispanic All Races 2000 (4)	Estimated Hispanic* Population 2003 (5)	Estimated Non-Hispanic** Population 2003 (6)
United States	290,809,777	3.3	25.7	12.5	36,351,222	254,458,555
State of Arizona	5,580,811	40.0	26.6	25.3	1,411,945	4,168,866
Service Area Counties
Cochise	122,161	20.6	26.3	30.7	37,503	84,658
Pima	892,798	26.5	24.6	29.3	261,590	631,208
Santa Cruz	40,267	29.3	33.6	80.8	32,536	7,731
Yuma	171,134	49.7	28.9	50.5	86,423	84,711
Total project service area	1,1226,360	—	—	34.1	418,052	808,308
State of California	35,484,453	13.6	27.3	32.4	11,496,963	23,987,490
Service Area Counties
Imperial	149,232	30.2	31.4	72.2	107,746	41,486
San Diego	2,930,886	12.6	25.7	26.7	782,547	2,148,339
Total project service area	3,080,118	—	—	28.9	890,292	2,189,826
State of New Mexico	1,874,614	20.1	28.0	42.1	789,212	1,085,402
Service Area Counties
Dona Ana	182,165	28.9	29.7	63.4	137,535	44,630
Grant	29,818	12.0	26.2	48.8	22,513	7,305
Hidalgo	5,234	-0.4	31.7	56.0	3,952	1,282
Luna	25,732	38.1	30.0	57.7	19,428	6,304
Otero	62,371	20.0	29.5	32.2	47,090	15,281
Total project service area	305,320	—	—	75.5	230,517	74,803
State of Texas	22,118,509	22.8	28.2	32.0	7,077,923	15,040,586
El Paso Service Area Counties
El Paso	705,436	14.9	32.0	78.2	551,651	153,785
Total El Paso service area	705,436			78.2	551,651	153,785
Valley AIDS Council (VAC) Service Area Counties
Cameron	363,092	28.9	33.8	84.3	306,087	57,005
Dimmit	10,341	-1.8	33.2	85.0	8,790	1,551
Edwards	2,031	-4.6	28.5	45.1	916	1,115
Hidalgo	635,540	48.5	35.3	88.3	561,182	74,358
Kinney	3,311	8.3	25.7	50.5	1,672	1,639
La Salle	5,822	11.6	29.4	77.1	4,489	1,333
Maverick	50,178	30.0	36.9	95.0	47,669	2,509
Real	3,020	26.3	23.4	22.6	683	2,337
Uvalde	26,787	11.1	31.4	65.9	17,653	9,134
Val Verde	46,569	15.8	32.1	75.5	35,160	11,409
Total VAC service area	1,146,691	—	—	85.8	984,299	162,392

*Estimated Hispanic population 2003 = (1) multiplied by (4).
**Estimated non-Hispanic population 2003 = (1) minus (5).
— = data not available.
Source: U.S. Census Bureau, 2003

TRANSBORDER PATIENTS Patients who travel back and forth between international borders are referred to as transborder patients. Transborder patients include people of Mexican origin who have U.S. citizenship or access to care on both sides of the border because of a U.S. resident visa; birth in the United States; or having one U.S. parent, which qualifies the person for U.S. resident status. Some transborder patients choose to live on the Mexico side of the border because of cultural upbringing, lower living costs, or family ties.

Beginning Stage: Process of Leadership and Instrument Development

In the initial stage of the 5-year initiative, the center leadership brought together grantees, HRSA national project officers, and center staff at one location in Norman, Oklahoma, to meet and learn how to work together as a team to fulfill the goals of the initiative. The initial process goal was to clarify roles of project members and to build trust between collective initiative players. It was important for direct service administrators to learn how to work with (and use the expertise of) evaluators at their local level and at the center. Having an evaluation component was new for most grantees.

A second process goal was to secure consensus among grantees on how to identify and evaluate unique aspects of their planned service delivery models in the context of evaluation questions based on the Ryan White Comprehensive AIDS Resources Emergency Act of 1990 (reauthorized in 2006 as the Ryan White HIV/AIDS Treatment Modernization Act of 2006). The evaluation center’s initial role was to provide leadership in consensus building and relationship building among grantees to support collective evaluation outcome goals. Evaluation center staff sought to involve the grantees in identifying questions for research and development of instruments to address the research questions. It was also necessary in this first stage to secure agreement on procedures for translation and standardization of data collection instruments, along with the process for data collection, to ensure quality of data and protection of the patients and clients to be served by grantees.

In the beginning, the center leadership sought to involve the grantees in decision making related to planning the outcome evaluation goals. The initial challenge was to create a structure for identifying immediate and long-term outcomes associated with culturally appropriate service delivery models for providing HIV care to underserved populations living in U.S.–Mexico border communities. In the social science literature, the term underserved refers to a societal subgroup that is underrepresented in a given social system as the result of structural barriers in that society. In the context of health care systems, the underrepresentation is attributed to multiple structural barriers, particularly poverty. The demographics of the health service areas for the grantees supports the premise that grantees were serving populations with limited income and limited formal education in English. The geographic proximity to Mexico creates a dual cultural environment that presents a language challenge for residents on both sides of the U.S.–Mexico border. To engage in commerce, residents on both sides of the border find it necessary to be English–Spanish bilingual.

The center and grantees developed data collection instruments to measure the intended service delivery outcomes. The second early and urgent task goal involved multiple implementation tasks, such as creation of data collection forms, training of data collection personnel, and creation of a mechanism for providing technical assistance. Another important task goal was creation or enhancement of grantee Web sites to link with the Centro de Evaluación and HRSA. The Web sites provided a means of disseminating service program information and progress reports to local consumers, other grantees, HRSA, and the evaluation center.

Building a Team

The original principal investigator sought staff who were competent to successfully meet the challenges of working in a bilingual and bicultural context and who could read and write both Spanish and English. Key personnel included the project director and two co-investigators, one at the University of California at Berkeley School of Social Welfare and one at the University of Oklahoma School of Social Work, who were integrated early in the project to provide cultural insights for planning initiative tasks. These key personnel were proficient in Spanish and had previous direct social service experience working with Hispanic and Latino populations in the context of health issues, particularly HIV and AIDS. A third co-investigator, a biostatistician at the University of California Berkeley School of Public Health, was added in the first year to provide expertise and consultation in applied theoretical research for instrument development and data analysis questions.

With key personnel in place, the center began its search for support staff to conduct center operations. Most initial staffing challenges were attributed to difficulty finding Spanish–English bilingual staff familiar with both Hispanic culture and HIV/AIDS. During the first year, the center added two staff research assistants: one to manage literature support activities; and the second, a webmaster, to maintain the center Web site and provide Web design support to border grantees. During the second project year, the center added an information technology analyst whose responsibility was to manage multisite data collection systems and provide electronic data technical assistance to border grantees. In the third year, the center added a data specialist to coordinate dissemination activities.

The Logic Model: Planning Goals

To facilitate the planning of initiative goals and objectives, evaluation center staff proposed a matrix logic model that was later adopted by grantees. The model required each demonstration service project to identify client-level objectives for specific intervention components. This process was helpful in developing appropriate instruments for measuring outcomes of the proposed delivery model.

The primary question guiding health service outcome assessment for the evaluation center and demonstration projects was the third HRSA Ryan White CARE Act evaluation question: “To what extent [is the Ryan White HIV/AIDS Program] providing services that remove barriers to primary care access so as to ensure that clients enter into and remain in care?” To examine this question, each project site and the center constructed a preliminary matrix model for planning, referred to as the logic model (Figure 1.1). The logic model gives health care planners a visual means of planning program outcomes.

FIGURE 1.1. Matrix planning: Logic model.

			Outcomes
Inputs	Activities	Outputs	Initial	Intermediate	Long-Term
HIV/AIDS programs and CHCs on the U.S.–Mexico border	Identify HIVinfected on the U.S.–Mexico border	500 HIV-infected clients/patients	Increased knowledge about the characteristics of those affected by HIV disease on the U.S./Mexico Border		Recognize the existence of HIV/AIDS as a social problem on the U.S.–Mexico border
Outreach workers, HIV testing and counseling staff	Outreach and testing	6,000 at-risk people	Increased number of individuals entering HIV/AIDS primary care	Earlier entry into HIV/AIDS primary care	Reduced morbidity and mortality
Case managers and case aides	Case management	500 HIV-infected clients/patients	Increased access to social support services and primary care	Increased conformity with treatment objectives	Increased sense of social or program support
Clinical staff (nurses, physicians, etc.)	HIV/AIDS primary care	500 HIV-infected clients/patients	Increased access, continuity, and use of primary care	Increased health-related quality of life	Reduced client morbidity and mortality Improved health outcomes (from medication adherence and prevention of OI)
HIV/AIDS programs and CHCs on the U.S.–Mexico border	Informing and influencing service and medical providers about HIV/AIDS issues	25 agencies on U.S.–Mexico border		Increased effectiveness and efficiency of HIV/AIDS care	Reduced client morbidity and mortality
HIV/AIDS programs and CHCs on the U.S.–Mexico border	Dissemination	Evaluation findings and policy statements	Increased knowledge in general public, service providers, and policymakers about U.S.–Mexico HIV/AIDS care issues	Increased public concern and funding for HIV/AIDS care on U.S.–Mexico border	Reduced client morbidity and mortality

The system identifies (1) inputs, in the form of community health centers with expert health care providers, who engage in (2) activities related to inputs (staff identify and provide care for HIV-positive patients); and (3) outputs, which are the projected numbers of patients that health care staff at the centers hope to care for during the life of the program.
community health center (CHC); opportunistic infections (OI).

The logic model uses general systems theory concepts first introduced by biologist Ludwig von Bertalanffy (1968/2006). A system is defined as a set of elements that are orderly and interrelated to make a functional whole. Grantees’ health care systems, in the context of general systems theory, have multiple parts that collectively represent a whole system. The system’s parts include the service components (i.e., physician care and nursing care) and case management staff, pharmacy experts who supply medical prescriptions, and support staff. The grantees’ collaborative staff evaluation efforts, along with those of the evaluation center staff, may be thought of as another system. The grantees submit data (inputs), and the evaluation center staff process and store the data and provide feedback (outputs) to grantees in the form of accumulated data analysis. Planned outcomes are identified in three stages: immediate, intermediate, and long-term.

The Structural Equation Model

Evaluation center staff developed a structural equation matrix model (Figure 1.2) to help grantees identify care variables, or factors believed to influence HIV/AIDS medical care. The structural equation model identified three sets of variables believed to influence HIV/AIDS care utilization:

1. The first set of variables are factors associated with demographic characteristics and risk behaviors that predispose people to need HIV/AIDS care.
2. The second set of variables are observed when predisposing factors result in medical indicators that present the need for HIV/AIDS care.
3. The third set of variables are factors in the form of equation conditions believed to influence utilization of HIV/AIDS care. Two of the three equation conditions are in the form of resource variable sets, which function as factors enabling care when present and, when absent, as disabling factors to care. The identification of disabling variable sets was particularly useful in constructing Module F, the Barriers to HIV Care instrument. The third condition in the structural equation model focuses on actual service availability and accessibility, which are contingent on the consumer’s enabling (or disabling) factors. Thus, the structural equation model helps explain how predisposing factors lead to the need for HIV/AIDS care and how service availability and accessibility is contingent on knowing enabling and disabling factors that may be unique to the particular consumer.

 

FIGURE 1.2. Structural equation model: barriers to care.

D

Focus of Demonstration Projects

The demonstration projects had two major foci. The first was to improve access to HIV/AIDS care through use of local, culturally relevant health care models that made use of indigenous paraprofessionals to conduct outreach activities. Those activities were designed to reduce barriers to access to HIV/AIDS care. The second focus was to develop innovative and culturally relevant case management models to support the primary medical team providing care for people who are infected with HIV. The collective goal was to identify “cross-cutting,” effective care models that took into consideration cultural and language considerations of the population living with HIV/AIDS along the U.S.–Mexico border. Each service demonstration project was asked to include relevant regional or local issues, such as travel distances or personnel challenges, in planning outreach or intervention strategies. Each regional demonstration service project was required to subcontract with a local university research consultant to coordinate local and collective evaluation activities with the University of Oklahoma evaluation center.

During the first year, two grantee–evaluator meetings (including site representatives and evaluation center staff) were held for the purpose of agreeing on a multisite research plan to conduct evaluation of project outcomes. The work involved developing and agreeing on common instruments for data collection. Grantees agreed to adopt five of six instruments during the initial meetings. Barney’s prior work with The Measurement Group (TMG), a leading national HIV/AIDS research organization led by consultant George Huba, is reflected in the research direction undertaken by the center (Huba, 1996–2000). TMG has a large pool of standardized instruments with translated Spanish versions for use with an Hispanic population (Huba, 1996–2000). Grantees felt the different Spanish dialects in the border service areas made it necessary to use the TMG English instrument versions and translate them to Spanish. Grantees agreed to help with initial English-to-Spanish instrument translations. To address the variation in word meaning among different dialects, an English–Spanish questionnaire codebook was developed. Data collection began in January 2001.

The Measurement Instruments

The final multisite instruments included seven modules, labeled A through G. Module A was a demographics survey capturing sociodemographic information, and Module B was a lifestyle survey exploring ties to Mexico, ethnic identification, and level of acculturation. Module C, the “change form” (discussed later), was introduced late in the initiative cycle to track patients’ status changes. Module D was designed to measure the level of behavioral risk factors associated with HIV exposure. Module E, a quality-of-life instrument developed by Huba 1996–2000, measured the level of disability in the context of activities of daily living. Module F, which assessed barriers to HIV medical care, was developed mainly from information obtained in focus groups conducted by the San Ysidro Health Center evaluation team during the initial year; it was added 6 months after the other instruments had been adopted. Finally, Module G was a client satisfaction survey used to measure satisfaction with health care services. Five of the seven instruments were adapted from previous TMG work (Huba, 1996–2000). Module instruments can be obtained from the Centro de Evaluación Web site (ou.edu/border/).

All instruments were translated from English to Spanish. To help overcome regional colloquial language differences, the center arranged for the linguistics department at the University of Texas, El Paso, to translate five of the seven multisite instruments and an accompanying codebook. Translation of Module F (the module assessing barriers to care) was assigned to an independent consultant in Washington, DC. Evaluation center staff discovered that despite back-to-back English-to-Spanish and Spanish-to-English translations by certified translators at the University of Texas, El Paso, debate over differences in word meanings among bilingual site staff leaders continued. The problem was resolved by listing multiple word meanings in the codebook.

Middle Stage: Data Collection and Continued Team Building

To ensure data quality, project data managers received data collection training by center staff in the use of data instruments and the codebook to use when a participant had difficulty understanding instrument language. The initial staff training provided useful feedback for center staff in refining the instrument and codebook language before the tools were used.

The successful use of seven multisite data instruments relied heavily on the willingness of grantees to participate in electronic data transfer. Center staff transformed multisite instruments to TeleForm software, which enabled grantees to have access to electronic data transmission, instrument distribution, and interactive instruments on a password-protected Web site. Grantees could access all instruments and transmit data on a continual basis to the center via the Web or by fax. The electronic transfer of data increased quality assurance and provided quick feedback of merged data files to grantees. Approximately 1,200 PLWHA participated in the study during the 5-year initiative.

The Qualitative Study

During the first 6 months, preliminary agreements were reached between grantees and the center leadership to collect qualitative data on a convenience sample of clients at each of five project locations to provide validation for information solicited in the quantitative instruments. The original study plan was for center staff to conduct two focus groups of five to seven participants per group at each site. The goal was to examine participants’ pretreament associations with accessing HIV/AIDS care and perceived or experienced barriers to medical care. The principal investigator decided to contract the focus groups to an external bilingual consultant. The focus group plan was dropped when staff from grantee sites had difficulty recruiting volunteer participants for focus groups on short notice. It is assumed that the principal investigator elected to use the external contractor and individual informant interviews because of time constraints and because he thought that study participants would feel safer sharing personal care experiences with someone not connected with the evaluation center or a particular health care site. His need to have information early and commit initiative funds before the close of the first-year funding cycle yielded a limited convenience sample of 32 informants who were recruited on short notice for the qualitative study.

Each site recruited volunteer participants, secured written consent, and arranged for the consultant to have a private office in which to conduct interviews. One interview was conducted in a participant’s home. The evaluation center used HRSA funds to cover consultant costs. Interviews were conducted in either English or Spanish on location at each grantee site during April and May 2002. The recorded interviews were transcribed and translated into English before being analyzed by center staff.

The Medical Chart Review Study

In addition to collecting quantitative data on six instruments and securing participants for the qualitative study described above, the five grantees agreed to participate with the evaluation center in a study of patient medical chart outcomes to measure select medical indicators pre- and posttreatment. This medical outcomes study was an attempt to replicate TMG’s previous work in south Florida (Huba & Melchior, 2001). The data were collected in the third and fifth years of the initiative.

Medical consultants traveled to all medical grantee sites to review patient medical charts. Recruitment of consultants was challenging given the short implementation timeline, travel distance, and time required to conduct chart reviews. The consultant’s initial lack of familiarity with site locations and with the complex nature of care systems having multiple service delivery sites added to the challenge. The success of the consultant’s medical chart reviews depended heavily on coordination by site grantees and their working relationships with their medical records staffs.

A modified version of TMG’s Broward (Florida) Study (Huba & Melchior, 2001) instrument was used to measure medical outcomes. The instrument was adapted for administration during two separate review periods to measure medical outcomes in up to 16 patient–doctor quarterly visits during the initiative period. The medical chart data collected resulted in approximately 40 pages of data per patient. Consultants received extensive orientation before conducting chart reviews and had access to center staff to answer problematic questions. Approximately 750 participants were part of the medical outcomes study.

Local Site Evaluation Projects

The center provided technical support to grantees for processing local project evaluation data. Ten local site instruments were created by site evaluators specifically to support local evaluation efforts at four of five project sites. Grantees were given the option of using the center’s TeleForm system to process and merge local data with existing multisite files using the Internet.

Building on the positive collaborative data collection experience between the sites and the evaluation center staff, an attempt was made to create a form for sites to report participant status changes such as marital status, death, lost to follow-up, or service delivery changes (e.g., change in physician, service location, or patient service status). The change module was not implemented across all sites, however, in part because staff were preoccupied with other routine data collection efforts.

End Stage: Lessons Learned

Despite challenges in the fifth year of this initiative, including a new principal investigator at the evaluation center, the existing center and grantee staff were successful in continuing the work that was started in prior years.

Administrative Challenges

Administrative challenges during the initiative were of two kinds: in-house project needs within the university system and external needs of the site grantees. The initial challenges were associated with recruiting and training personnel to implement the project at all levels. One important administrative challenge was assisting grantees with in-house changes, usually personnel turnover, that could affect project performance. Those changes did not occur frequently but, in retrospect, could have been anticipated given the number of personnel working on this initiative and their diverse backgrounds. The center staff was responsible for structuring and coordinating the multisite evaluation effort with site personnel having varied education, work experience, and site resource limitations. The level and quality of communication within and between partners in this initiative was clearly a key factor in the success of the SPNS project.

The Institutional Review Board

When the center first began to assimilate itself into the formal university structure, the center’s leadership quickly learned the importance of securing clear and timely institutional review board (IRB) approval. Approval was necessary before grant funds could be expended to conduct research functions. In subsequent IRB approval requests during the award period, leadership learned the importance of seeking IRB approval for reporting protocol changes and the need for shared IRB approvals across university sites when the same client populations were involved. Key research partners across projects needed IRB-approved research protocols from their own IRBs as well as from IRBs of partner institutions. Individual projects and center staff could have saved valuable time and effort during the final award period had they known such data safeguard procedures had to be in place. The recommendations section offers suggestions for future SPNS researchers.

University personnel policies delayed and sometimes discouraged applicants for evaluation center employment. As evaluation center needs became clearer, it was evident that additional staff with research skills were needed to manage the expanding multisite database and oversight of the medical (chart review) outcomes study. Implementing and managing a Web-based data collection system (a cornerstone of the center’s efforts) required off-site staff training to augment staff competencies to effectively meet technology needs of the center and its partner SPNS grantees.

Evaluation Center Staff Role Changes

As evaluation center leadership took on the management of additional grants (other than the SPNS project), roles and responsibilities had to be realigned. The shift in staff roles affected the balance of staff effort expended on SPNS partners. Staff leadership roles were reassigned and job functions were distributed across expertise of staff. The changes are mentioned here because the center experienced a change in leadership that coincided with the staff changes. It is assumed that those changes affected center staff functioning and staff interactions with counterpart grantee personnel.

Communication Among Initiative Partners

The bonding with partner grantees came about through ongoing engagement that involved frequent staff communication during regularly scheduled site visits from center staff. Those visits, along with bimonthly telephone conference calls that involved partner grantees, HRSA, and the center, were the primary means for building team relationships and addressing initiative questions. The regular telephone conference calls were invaluable sources of group support that afforded grantees a private venue for center staff consultation and validation. Sites could and did request individual telephone conferences with center or HRSA staff between staff site visits. Ongoing, open communication between center, HRSA, and grantee staff was a key element that helped achieve the successes reported here.

Partnering With Grantees

Engaging partner grantees in the development of multisite data collection modules and the dissemination efforts provided important benefits. The process helped grantees see themselves as equal partners in the initiative. Discovering regional differences in Spanish-language terminology for the questionnaires provided additional opportunities to involve grantees in efforts to find terms that would more likely be understood by the population in a particular region. This process helped reinforce the grantee partners’ sense of ownership in the initiative. Many of the professional relationships that began as a result of the initiative have been sustained and have resulted in new HIV/AIDS collaborations and academic–community partnerships.

During initial data analysis, some measures were found to not completely address the intended research questions. For example, Module F was intended to measure patient perceptions of barriers to care before and after seeking care at a SPNS care site, not generally. An ad hoc committee of the initiative’s dissemination committee (see below) identified a potential interpretation problem and advised the grantees. Rubin and Babbie’s (1997) advice on questionnaire construction may be helpful to future SPNS researchers: “[T]ry to use unbiased wording (to minimize systemic error) and terms respondents will understand (to minimize random error)” (p. 171). Of course, the challenge for the researcher is greater when working with translated instruments in situations involving differences in regional terminology. In retrospect, the error was in rushing the process of questionnaire construction. The center and grantees could have spent more time pilot testing the English and Spanish versions of the various instruments with groups similar to the intended study populations.

Dissemination Committee

A multisite dissemination committee was created to coordinate collective and individual dissemination efforts. The committee provided a means of sharing initiative ownership with grantees and responsibility for dissemination of SPNS findings. With seven universities, five community-based organizations, a Federal agency, and a private organization all having dissemination interests in the SPNS initiative, it was important for key contributors to understand initiative directive priorities. The diverse organizational structures, the number of colleagues with research interests, and the large pool of data made it necessary to have a centralized group to coordinate dissemination functions. Thus, the center created the dissemination committee, which was chaired by Tony Estrada, University of Arizona, the contract officer for the evaluation component of the Arizona Border HIV/AIDS Care Project. The committee was composed mainly of colleagues who had data management responsibilities. The role of the committee was to act as a clearinghouse for grantees to reduce duplication of effort and encourage collaboration. The committee was charged with review of proposals submitted by grantees to use evaluation center data. Committee approval was built in as protocol for release of collective data.

Appendix 1.A. provides a partial list of dissemination activities that resulted from the initiative. A special journal issue on HIV/AIDS in the Journal of HIV/AIDS and Social Services was published in fall 2006 (Curiel & Land, 2006a). The issue was published as a book: Outreach and Care Approaches to HIV/AIDS Along the U.S.–Mexico Border (Curiel & Land, 2006b). The list includes findings reported at conference proceedings (18 presentations from 2001 to 2006); it does not include a number of additional dissemination products, such as Web sites with links that reported ongoing activities of interest to consumers, public officials, and community leaders. Several publications in CD–ROM format have been produced. One HRSA publication, Innovations Along the U.S./Mexico Border: Models That Advance HIV Care, features three grantee site leaders and introductory remarks by a member of the evaluation center staff. Grantee and evaluation center staff have presented research findings at numerous national and international conferences. One site, the Valley AIDS Council, is internationally known for its sponsorship of an annual HIV/AIDS international conference. The dissemination efforts have exceeded expectations.

Retrospection and Recommendations

The initiative represented in this monograph was a success because of the combined expertise of colleagues across sites and their commitment to the mutual goals of increasing access to medical care and to education to prevent HIV/AIDS along the U.S.–Mexico border. A bond was formed among staff across sites and evaluation center leadership. The bond between colleagues was nurtured by frequent staff contacts; in-person meetings with HRSA staff twice a year; and twice-monthly staff telephone conference calls among grantees, the evaluation center, and HRSA officers. Additional sources of team building came about through the creation of a network of Web sites that served to reinforce the partnership connections; periodic site visits by center staff; and, most important, the center’s friendly, competent staff, who had expertise in evaluation technology and data collection resources not previously available to most service sites.

In hindsight, the center should have taken more time with instrument construction to anticipate analysis questions, particularly because of required English-to-Spanish translations. A pilot study with a sample of similar participants at each site would have prevented some of the problems encountered in determining income and education of participants. The income variable was a problem because many participants reported no income at the time of initial project entry. The education variable did not distinguish between formal education in Mexico or in the United States.

Center staff also learned the importance of keeping IRBs informed of protocol changes. The evaluation center erred by not seeking IRB approval for leadership and format changes to a previously approved protocol for a qualitative study. An outside consultant was hired without IRB approval to conduct individual informant interviews that were not part of the original IRB-approved protocol. The lesson learned is that study protocol changes need IRB approval. IRB boards exist to protect consumers, the university, and the investigator. An investigator is vulnerable to legal action when he or she fails to follow IRB-approved study protocols.

In conclusion, outcome goals for the SPNS initiative were realized. The center and its partner grantees deserve credit for teamwork that contributed to the success of the SPNS partner initiatives. In the chapters that follow, each SPNS grantee describes the site’s prior work with clients living with HIV/AIDS and its partnership development with local health care leaders during SPNS project application, implementation, and follow-up. They describe the development of their SPNS model and challenges posed at various implementation phases. Each chapter includes a case scenario to illustrate application of the model components.

Below are 12 recommendations for SPNS projects that are targeting outreach or care approaches to Hispanic communities. The recommendations are based on lessons learned by Centro de Evaluación staff over the 5-year initiative and provided in the hope that others can benefit from successful, collective SPNS work.

1. Become familiar with the five service models presented in this monograph.
2. Use local epidemiologic data for project planning and identification of at-risk groups.
3. Identify early tasks to be performed by staff at various levels and hire staff with required expertise (e.g., language skills, cultural knowledge, knowledge of HIV/AIDS, Web design, data collection systems management).
4. Use the logic and structural equation models (Figures 1.1 and 1.2) for a visual picture of anticipated staff functions, client needs, and project outcome goals.
5. Nurture staff relationships at all levels to create a team approach.
6. Have regular meetings with project staff and initiative partners, by phone or in person, to provide supportive supervision and direction.
7. Attend to language and cultural competency of staff working directly with consumers who have limited English proficiency.
8. Anticipate colloquial language differences in translation and administration of research documents.
9. Create a codebook to manage colloquial differences in language.
10. Pilot-test research instruments with a group similar to the study group.
11. Create and use Web sites to inform consumers, to educate others about the program, and to increase networks.
12. Know IRB requirements for initial approval and for protocol changes.

References

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Arizona Department of Health Services, Division of Public Health Services, Office of HIV/AIDS. (2003a). Arizona HIV/AIDS Semi-Annual Surveillance Report, 10(1). Retrieved August 16, 2006, from www.azdhs.gov/phs/hiv/pdf/semi0703.pdf

Arizona Department of Health Services, Division of Public Health Services, Office of Infectious Disease Services. (2003b). Number of reported cases of selected notifiable diseases by category for each county, Arizona, 2003. Retrieved August 16, 2006, from www.azdhs.gov/phs/oids/stats/pdf/cases_2003.pdf

California Department of Health Services. (2003). Local health jurisdiction STD data summaries for 2003. Retrieved August 16, 2006, from www.dhs.ca.gov/ps/dcdc/STD/stddatasummaries.htm

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Centers for Disease Control and Prevention. (2004). HIV/AIDS Surveillance Report, 15. Tables 5, 14. Retrieved August 9, 2006, from www.cdc.gov/hiv/topics/surveillance/resources/reports/index.htm

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Centers for Disease Control and Prevention. (2006b). Racial/ethnic disparities in diagnoses of HIV/AIDS—33 States, 2001–2004. MMWR: Morbidity and Mortality Weekly Report, 55(5), 121–125.

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New Mexico HIV/AIDS Epidemiology Program. (2004). New Mexico HIV/AIDS annual surveillance report. Santa Fe: New Mexico Department of Health. Retrieved from www.health.state.nm.us/epi/pdf/HIV_Annual_Surv_Report_2004.pdf

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APPENDIX 1.A. Border Dissemination Activities by the Evaluation Center

	Title	Year	Avenue of Dissemination
1	Fact Sheet on Border Health	2001	Distributed at United States-Mexico Border Health Association (USMBHA) conference, Las Cruces, NM
2	HIV/AIDS issues on U.S./Mexico border	2001	Panel presentation, USMBHA conference, Las Cruces, NM
3	An annotated bibliography of research related to HIV/AIDS and Latinos, and border issues	2001	Distributed at SPNS border project grantee meeting
4	Subpopulation characteristics predicting patient satisfaction in a U.S./Mexico border sample of HIV/AIDS primary care patients	2001	Panel presentation at American Public Health Association conference, Atlanta, GA
5	U.S./Mexico HRSA SPNS Border Health Initiative	2001	Panel presentation at American Public Health Association conference, Atlanta, GA
6	Five HIV/AIDS Care projects along the U.S./Mexico border	2002	Poster presentation at RWCA All-Titles Meeting, Washington, DC
7	Multisite HIV/AIDS issues on the U.S./Mexico border across five projects	2003	Conference presentation, All Things Are Connected conference, Las Cruces, NM
8	Cultural factors affecting HIV/AIDS service delivery on the U.S./Mexico border	2003	Social Work and HIV conference, Albuquerque, NM
9	Comprehensive health service delivery for HIV-positive people living along the U.S./Mexico border	2003	Presentation at the USMBHA conference, San Diego, CA
10	Multisite HIV/AIDS issues on the U.S./Mexico border across five projects	2003	Presentation at the Social Work and HIV conference, Albuquerque, NM
11	HIV/AIDS disparities and issues for U.S./Mexico border populations	2003	Presentation at the Making Connections conference at the University of New Mexico, Las Cruces, NM
12	Latinos and HIV/AIDS on the U.S./Mexico border: Experiences as HIV+, social services, primary care programs	2003	Presentation at the American Public Health Association conference, San Francisco, CA
13	U.S./Mexico Border Health Initiative	2004	Presentation at the Ryan White CARE Act Grantee conference, Washington, DC
14	An application of Borrayo’s Cultural Health Belief Model to HIV/AIDS seropositive Hispanics living along the U.S./Mexico border	2004	Journal of HIV/AIDS and Social Services, 3(3), 9–34.
15	A qualitative study of 32 persons living with HIV/AIDS on the U.S./Mexico border	2004	Presentation at the Ryan White CARE Act Grantee conference, Washington, DC
16	HIV/AIDS along the U.S./Mexico border: A description of demographics, lifestyles and culture, risk factors, quality of life, and barriers reported by HIV positive clients living in U.S./Mexico border region	2005	Publication on CD-ROM distributed at the 2005 American Public Health Association conference, Philadelphia, PA, and at the 2006 Ryan White CARE Act Training and Technical Assistance Grantee Meeting, Washington, DC
17	A review of the statistical aspects of quality of life measurement tools for HIV/AIDS	2005	Presentation at the American Public Health Association conference, Philadelphia, PA
18	Demographic characteristics of a population of HIV/AIDS seropositive individuals receiving care through five demonstration sites along the U.S./Mexico border	2005	Poster presentation at the American Public Health Association conference, Philadelphia, PA
19	Assessing the effects of strain on HIV/AIDS risk behavior and adherence to treatment regimes: an empirical test of general strain theory	2005	Dissertation
20	A 2000–2005 HIV/AIDS Project: A profile of 1,200 persons living with HIV/AIDS along the U.S./Mexico border	2006	Presentation at the USMBHA conference, Monterrey, Mexico
21	Demographics, Lifestyle, and Quality of Life; part of the workshop HRSA SPNS U.S./Mexico HIV/AIDS SPNS Initiative: Selected outcomes over 5 years	2006	Workshop presentation at 2006 Ryan White CARE Act Training and Technical Assistance Grantee Meeting, Washington, DC
22	Risk and Barriers; part of the workshop HRSA SPNS U.S./Mexico HIV/AIDS SPNS Initiative: Selected outcomes over 5 years	2006	Workshop presentation at 2006 Ryan White CARE Act Training and Technical Assistance Grantee Meeting, Washington, DC
23	Findings from Qualitative Data; part of the workshop HRSA SPNS U.S./Mexico HIV/AIDS SPNS Initiative: Selected outcomes over 5 years	2006	Workshop presentation at 2006 Ryan White CARE Act Training and Technical Assistance Grantee Meeting, Washington, DC
24	Socio-demographic characteristic of HIV/AIDS individuals living and receiving care along the U.S./Mexico border through five demonstration projects	2007	Article published in special issue of Journal of HIV/AIDS and Social Services, 5(4)
25	Socio-demographic characteristic of HIV/AIDS individuals living and receiving care along the U.S./Mexico border through five demonstration projects	2007	Chapter in Outreach and Care Approaches to HIV/AIDS Along the U.S./Mexico Border (Curiel & Land, 2006b)
26	Migrant labor, acculturation, and risk behaviors of HIV/AIDS-positive Hispanic patients receiving HIV/AIDS care along the U.S./Mexico border	2007	Migrant labor, acculturation, and risk behaviors of HIV/AIDS-positive Hispanic patients receiving HIV/AIDS care along the U.S./Mexico border
27	Estimation of the prevalence of AIDS, opportunistic infections, and standard of care among HIV/AIDS patients receiving care along the U.S./Mexico border through the SPNS: a cross-sectional study	2007	Estimation of the prevalence of AIDS, opportunistic infections, and standard of care among HIV/AIDS patients receiving care along the U.S./Mexico border through the SPNS: a cross-sectional study
28	HRSA Border Monograph	2007	HRSA Border Monograph
29	A critical review of statistical aspects of quality of life measurement tools for HIV/AIDS patients	In press, 2008	A critical review of statistical aspects of quality of life measurement tools for HIV/AIDS patients

Many documents are available at http://casr.ou.edu/border/dissemconf.htm.