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| U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau • Special Projects of National Significance • February 2008 | |
CHAPTER 5
A Nurse-Based Disease Management Model of HIV/AIDS Care on the U.S.–Mexico
Border:
Centro de Salud Familiar La Fe
The city of El Paso, Texas, is closer to the New Mexico capital of Santa Fe and to the capital of the State of Chihuahua, Mexico, than it is to its own State capital of Austin. Located on the westernmost tip of the State, it lies in a border region where three States and two Nations come together. Its geographic location helps explain the uniqueness of the city sometimes called “The Other Texas.”
The combined population of El Paso and its sister city, Ciudad Juarez, exceeds 2 million, making it one of the largest urban areas along the U.S.–Mexico border. The metropolitan area’s population grew 1.5 percent between 2003 and 2004 (City of El Paso Department of Economic Development, 2007a). Approximately 82 percent of the population of El Paso County is Hispanic, and 27 percent of its residents are foreign-born (U.S. Census Bureau, 2005). The Ciudad Juarez–El Paso area is one of the largest international border crossings in the United States; a total of 43,000 private vehicles, 25,000 pedestrians, and 3,500 commercial trucks cross the border from Mexico into El Paso every day (City of El Paso Department of Economic Development, 2007b).
Texas leads the Nation in the number of citizens without health insurance and in the most uninsured residents living on the border. In fact, 41.5 percent of working-age El Pasoans are without health insurance (Ahluwalia, Bolen, Mokdad, & Garvin, 2006). The problem is further complicated because the Medicaid reimbursement rates in the State of Texas are significantly lower for services delivered in the border region than for services in any other geographic region of the State. This situation presents a major barrier to care in a city like El Paso, where Medicaid is a major payor for health care services.
Historically, the border region has been the most economically disadvantaged area in Texas. Median household income is just over $32,000; about 25 percent of the population falls below the Federal Poverty Level (U.S. Census Bureau, 2005); and almost 20 percent of El Pasoans age 25 and older have less than a ninth-grade education (U.S. Census Bureau, 2004). In El Paso, typical prevention strategies and service provision may prove unsuccessful if sociodemographic realities for vulnerable and hard-to-reach populations are not taken into account.
In addition, a great need exists for bilingual health care providers, whose skills are essential to any agency that provides services to residents of this community. Of the 77 percent of El Paso County residents who speak a language other than English at home, 97 percent speak Spanish (U.S. Census Bureau, 2004). Demographic data underscore that cultural competency must be part of any health care provider’s expertise to deliver quality programs that are useful and relevant to this population.
HIV/AIDS Epidemiologic Data
Data from the Centers for Disease Control and Prevention (CDC; 2003) show a continued decline in the number of AIDS-related deaths nationwide and a 2 percent increase in AIDS incidence between 2001 and 2002. At the end of 2002, an estimated 384,906 people in the United States were known to be living with AIDS. The best estimates of HIV incidence continue to be an issue of grave concern (CDC, 2003).
HIV/AIDS incidence rates are consistently and dis-proportionately high among Hispanics, who compose 12.5 percent of the U.S. population but 19.2 percent of AIDS cases nationwide. The number of Hispanic patients using services funded by the Ryan White HIV/AIDS Program in the West Texas area mirrors local demographics. In 2002, 71.9 percent of Ryan White HIV/AIDS Program patients were Hispanic, and less than 10 percent were non-Hispanic Whites (West Texas HIV Assembly, 2002).
In Texas, 4,411 new AIDS cases were reported in 2002. Ninety new cases were reported in El Paso County, bringing the number of residents in El Paso County living with HIV/AIDS to 1,124 at the end of 2002. Men who have sex with men (MSM) continues to be the leading transmission category in the county, followed by injection drug users (Texas Department of Health, 2003).
El Paso County has seen growth in sexually transmitted infection (STI) markers that increase the likelihood of HIV transmission. In 2002, the number of reported gonorrhea cases was up by 29 percent over the previous year, cases of chlamydia increased by 4 percent, and cases of syphilis increased by 9 percent over the past year (Texas Department of Health, 2002).
While infection rates in this region have increased, AIDS-related mortality has decreased. The statistics illustrate the mounting burden on the health care system and stress the growing need for quality programs that provide life-enhancing services.
HIV Services
HIV/AIDS care in resource-poor communities on the U.S.–Mexico border has historically faced serious challenges. The weak public health infrastructure in border communities has presented a major obstacle in the delivery of HIV/AIDS services to the thousands of people who need them. Case management services for people living with HIV/AIDS (PLWHA) are fragmented and unevenly distributed within the city of El Paso and became more so when the area’s only AIDS service organization closed in December 1998 after more than 10 years of operation. Few facilities have both medical and case management services onsite; as a result, patients frequently visit multiple agencies for health and support services, often completing duplicate paperwork at the various sites.
The public and nonprofit HIV service delivery system in this area is further challenged by issues related to immigration and welfare and concerns about “public charges.” Those issues have made many people afraid to seek and use the public health and human services that are available. In addition, a growing proportion of clientele are transborder dual residents (i.e., people who live or work on both sides of the border). Many patients participate in parallel, simultaneous systems of care in El Paso and Ciudad Juárez because of linguistic and cultural preferences, economic problems, and poor availability of HIV antiretroviral medications in Mexico.
The lack of qualified health care providers presents additional concerns. In the past, case management has often been confused with disease management, and unlicensed case management staff sometimes have been involved in patient triage and dispensing treatment advice.
Other barriers further impede the delivery of HIV-related services to the people who greatly need them, including transportation difficulties, lack of HIV- and AIDS-related knowledge, language issues, and comorbid illnesses. Needs assessments conducted in El Paso prior to the Special Projects of National Significance (SPNS) U.S.–Mexico Border Health Initiative revealed that several important services remained unavailable; one-third of patients surveyed stated that they were not aware that certain services existed or whether they were eligible to use them. Other concerns were lack of communication between service providers and clients, difficulty navigating the existing system, accessibility of services, and fear of discrimination.
Organization
Centro de Salud Familiar La Fe is an internation-ally recognized community health center (CHC) that has been providing comprehensive health care services to residents of El Paso for more than 37 years. The CHCs that are run by La Fe provide medical, dental, social, and preventive services to underserved populations in the border region. La Fe’s mission is to improve the quality of life of its clients by continually enhancing the health and human services it provides.
In October 1990, La Fe established a comprehensive HIV early intervention services program, which has served as the foundation for the concept of providing “one-stop shopping” for HIV health and support services. La Fe’s CARE Center is currently the only comprehensive HIV/AIDS service center where El Pasoans at risk of or infected with HIV can receive a complete, seamless continuum of preventive and primary medical and case management services that are culturally and linguistically sensitive. Clients of the CARE Center have access to everything from initial HIV testing services and peer counseling in delivery of positive results to the medical and social services needed in the management of later stages of the illness.
In 1990, La Fe received its first grant under Part C of the Ryan White HIV/AIDS Program; in the years that followed, it has continued to develop a modern network of HIV/AIDS preventative and primary care services. This network incorporates culturally appropriate health promotion, disease prevention, and community initiatives that are necessary for delivering comprehensive wellness services to the border population.
Service Delivery Model
La Fe’s service delivery model was intended to establish a single, seamless system of care for PLWHA centered on the role of a bachelor’s-level registered nurse or care manager. The program involved creating multidisciplinary teams, referred to as care teams, consisting of three key providers: a nurse care manager, case manager, and an HIV-positive peer advocate. The model centralizes patient care by combining social and medical case management services into a collaborative team.
Patients are referred to the CARE Center from onsite testing, outreach efforts, other La Fe clinics, the Texas Department of Health HIV counseling and testing sites, the El Paso County Detention Facility, the county hospital (R. E. Thomason), and other agencies in collaboration with La Fe for those services. For the SPNS initiative, existing patients of the CARE Center were assigned to one of three care teams alphabetically by surname. New patients were assigned to one of these teams as they became active clinic patients. Each team was responsible for a caseload of 100 to 150 patients.
The logic model in Figure 5.1 shows the various components of this innovative model of care and their intended functions and expected outcomes, including initial, intermediate, and long-term patient outcomes.
The Role of the Nurse Care Manager
The proposed model indicated an expanded role for the bachelor’s-level registered nurse or nurse care manager who would function as the care team leader. The care manager would have a limited clinical role, especially in the first year of the project. A strong emphasis was placed on patient education: Nurses would conduct an individual educational consultation with each patient as he or she entered the program. The consultations would last from 1 to 2 hours, depending on the needs of the patient, and involved taking a comprehensive medical and social history. During this initial consultation, the nurse would discuss information related to the life cycle and replication of HIV; patient understanding of HIV-related health markers; and information about risk factors, risk reduction, and the importance of following through with medical appointments. The nurse also would review with the patient the various services provided by the clinic, ensuring that the patient was aware of the full scope of services and clinic hours, including after-hours on-call services. Each patient was provided with an information packet at that time.
The sessions, although somewhat structured, would be tailored to the individual needs of the patient, and more time was spent on weak areas of knowledge. The one-on-one sessions provided not only important factual and concrete information to empower the patient but also an initial opportunity for patients to connect with the nurse responsible for managing their care.
Nurses also were responsible for recruiting patients into the SPNS program. During the initial visit, they were to explain the basic purpose of the study, its potential risks and benefits, and the structure of the teams. Patients expressing interest were enrolled in the program. The patients who declined participation were asked some basic questions about their reasons for declining. They received the same services as those who were officially enrolled in the program, but they did not participate in the program evaluation process. More than 99 percent of patients who were approached were enrolled in the SPNS initiative.
At the end of the initial consultation, the patient was introduced to the social worker and peer advocate who were members of the care team. The nurse emphasized to the patient that the care team would be responsible and available to him or her for all aspects of care.
Case Managers
The model specified that positions within the case management component were to be filled by trained social workers who would serve an essential function. They were responsible for assessing and addressing all aspects of patient financial and social service needs, including qualifying clients for assistance related to their diagnosis, enrolling patients in medication assistance programs, addressing housing and transportation issues, making interagency referrals, and conducting home visits to assess a patient’s daily living conditions.
The role of the social worker was to ensure that the patient received all necessary social services and available benefits. Social workers served to link clients to community resources to enhance their care and decrease duplication of services. They were strong patient advocates and facilitated patient access to and utilization of services. Hiring licensed staff for case management was intended to address the previously described deficiencies that had existed in the delivery of those services; many of the positions had been filled by unlicensed staff with little or no training in social work.
| Inputs | Activities | Outputs | Outcomes | ||
|---|---|---|---|---|---|
| Initial | Intermediate | Long-Term | |||
Multidisciplinary
coordinated care
management teams
For each 150 patients:
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Disease-state management | 300 patients served |
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|
Trained HIV
counselors
|
HIV counseling and testing |
|
|
|
|
| AIDS Education and Training Center (AETC) personnel | HIV/AIDS training |
|
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Peer Advocates
Peer advocates who were PLWHA played an active and important role in the program. They usually had the first contact with new clients and often delivered seropositive test results and counseling to incoming patients. Peers were responsible for performing initial eligibility screening and worked closely with social workers in certain aspects of case management. They were involved in educating clients about coping with HIV and helping them develop problem-solving skills for disease prevention and health promotion. Most important, peer advocates were available to patients in situations of emotional distress and provided a safe environment in which patients could ask the questions that they might not feel comfortable asking others.
Each peer advocate was responsible for maintaining a current and complete problem list for patients on his or her team. Their duties at the CARE Center included treatment adherence advocacy, support group facilitation, “buddy” support provision, appointment reminders, missed appointment follow-up, office assistance, computer data entry, “Next Step/Positive Living” class instruction, and counseling related to HIV testing. They also were involved in outreach activities, fundraising efforts, job training and placement, and volunteer recruitment and coordination.
Care Team Meetings
The care teams met on a regular basis to discuss all issues related to patient care and to identify and resolve problems as they arose. Meetings were held on a monthly basis and were to be increased if it became evident that more frequent meetings were needed.
Case management issues commonly addressed during the meetings included concerns about housing, the need for medical equipment in the home, difficulties with transportation, and scheduling home visits for hard-to-reach patients. It was not uncommon for staff to visit homes to assess a patient’s case management needs and to ensure the presence of adequate residential support systems. Similarly, all aspects related to the medical aspect of case management were open for discussion during those meetings. Problems with treatment adherence, side effects, and all concerns related to the well-being of the patient could be raised at this meeting by any team member.
Collaborations
The service delivery model required intense collaboration with various organizations, including the Texas Tech School of Medicine, International AIDS Empowerment, and the University of Texas at El Paso.
The project formed a unique, groundbreaking collaboration between La Fe and Texas Tech School of Medicine’s Health Science Center, the two main public providers of primary and specialty care in El Paso. Armando Meza, a specialist in infectious diseases and medical director at the CARE Center, was contracted through Texas Tech to provide the medical oversight necessary for the implementation of the model.
Another important partnership was established with International AIDS Empowerment (IAE), a nonprofit organization staffed solely by PLWHA. IAE oversees a number of programs intended to improve the quality of life for PLWHA regionally, nationally, and internationally. The IAE’s Robert Delgado Treatment Advocacy Center was involved in the El Paso SPNS project from its inception and proved to be an invaluable asset. IAE was contracted to provide the peer advocates, who were an integral part of the model. The inclusion of PLWHA in the delivery of services to other clients was one of the most successful features of the program.
Nurse Practitioner Services
Funding from Ryan White HIV/AIDS Program Parts B and C allowed the CARE Center to hire a certified family nurse practitioner (FNP-c) to provide clinical services on a full-time basis in collaboration with a part-time physician. Having a nurse practitioner onsite greatly facilitated the clinic’s ability to deliver quality services to patients and had a positive impact on the project. With an FNP-c on staff, the nurses were better able to devote time and effort to the project. The CARE Center also was able to increase its hours of operation by offering walk-in hours on two additional half-days per week.
The role of the FNP-c was to ensure totality of care. Whereas the physician provided patients with necessary medical attention and supervised clinic staff, the FNP-c functioned more as a coordinator of care and addressed any gaps in services.
Pharmacy Services
The inclusion of a part-time pharmacist was originally intended to give patients access to consultant pharmacy services as well as to establish an onsite Class D clinic pharmacy (a designation that would allow the clinic to carry a limited number of prepackaged medications that could be dispensed by medical personnel as needed).
In the first year of the project, a pharmacist was hired and began providing pharmacy-based consultant services at the CARE Center. His work involved conducting complete medication histories during individual consultations with patients and reviewing basic treatment information, such as drug interactions and side effects. His initial role was expanded over time as a number of common problems and patterns were recognized. Patient consultations were soon targeted to patients who were experiencing difficulties with treatment adherence. Medication counseling sessions focused on identifying barriers to adherence and discussing ways of overcoming those issues.
Recognizing that patient nonadherence in the management of HIV/AIDS was a paramount concern, the pharmacist and the CARE Center established a medication adherence service (MAS) to directly address the issue. The goal for MAS was to create a partnership among the clinical pharmacist, patient, nurse practitioner, physician, and other members of the health care team for the purpose of achieving responsible, effective medication use for the improvement of health outcomes.
Objectives included increasing the total number of medication doses taken to exceed 95 percent of those prescribed, improving quantitative treatment outcomes, and reducing the number and duration of physician visits. The service examined the interconnectedness of patient characteristics, medication regimen, clinical program, and health care professionals.
In MAS, patients were referred by their physician or nurse for an initial 45-minute visit with the clinical pharmacist. As part of the service, the clinical pharmacist developed an individualized management plan with individualized goals for each patient. The plan was based on information obtained from a preassessment questionnaire. Patients were then referred for assistance from other clinic staff as needed. Clinical pharmacy consults under MAS were provided to patients at least once per month until adherence goals were achieved.
Evening medication adherence classes, which taught staff to work with patients who had adherence issues, had been offered initially to clinic staff on a bimonthly basis. The classes evolved to include patients and moved from lecture-type sessions to interactive sessions that focused on various treatment issues. Topics included opportunistic infections, STIs, medication side effects and, of course, concerns about medication adherence.
The CARE Center now has a Class D clinic pharmacy in place and has taken steps to establish an expanded formulary. Having recently received AIDS Drug Assistance Program (ADAP) approval, the clinic will now be able to dispense much-needed medications to patients free of charge.
On-Call Service
The initial project proposal included the establishment of an on-call service that patients could access on a 24-hour basis. In January 2002, the CARE Center began providing this service, which was staffed by the nurse practitioner and clinic nurses, who rotated coverage. The availability of the service provided security to clients by offering 24-hour access to a bilingual health care provider familiar with HIV/AIDS. In part because of low utilization, the service was discontinued after funding for the program ended.
The Nutrition Component
Treatment with highly active antiretroviral therapy (HAART) often involves complicated medication–meal schedules, and common medication side effects directly affect both food intake and drug absorption. For those reasons, nutritional education and counseling at all stages of disease progression is essential to patient health.
The La Fe–SPNS logic model included the provision of consultant services from a registered dietician. In fact, the initial project proposal included a strong nutrition component in the disease management model; however, because of the scarcity of bilingual registered dieticians in the El Paso area and statewide, the clinic was forced to function without one for the first 3 years of the project. During this time, clinic nurses and the nurse practitioner filled the role of nutritionist by incorporating nutrition-based education into their consultations with patients.
In 2003, the CARE Center hired a community health education specialist, who began providing consultant services that focused on health maintenance from a nutritional perspective. Filling this position alleviated the additional burden that was being placed on clinic staff.
Mental Health Services
Preliminary findings in Year 1 of the project were instrumental in justifying the need for mental health services at the CARE Center. Thirty-four percent of patients identified mental health concerns as a reason for seeking treatment on the multisite evaluation instrument, and 30 percent reported symptoms consistent with at least moderate depression.
In 2002, the CARE Center began providing much-needed onsite diagnostic and therapeutic services through a contract with Family Services of El Paso. Services were provided by advanced clinical social work practitioners or licensed professional counselors. Consistent with initial figures, 36 percent of patients were referred for mental health services after being evaluated by a mental health professional. Although the initial logic model included the provision of part-time mental health services, initial findings confirmed the need to make those services an integral part of care.
Training
As part of the SPNS initiative, the Texas–Oklahoma AIDS Education and Training Center (AETC) provided specialized training to nurses and nurse practitioners at different sites. Nurses also attended several 2-day training sessions as part of a preceptorship program at Thomas Street Clinic in Houston. A separate preceptorship was completed by the nurse practitioner at Amelia Court Hospital in Dallas.
Through those and other onsite training sessions (many provided by the clinic’s medical director), nurses on the project received more than twice the anticipated amount of continuing education and passed the examination to become AIDS-certified registered nurses (ACRN) in November 2003.
Media and Marketing
The CARE Center has cultivated important relationships with local print and broadcast media that have provided a means of raising HIV/AIDS-related awareness and of informing the public about the many services available at the clinic. In September 2003, the CARE Center established a targeted media relations system that produced a number of appearances by staff on local television stations as well as print coverage in local newspapers.
Successful media placements included coverage surrounding the National Latino AIDS Awareness Day event in October 2003. The event and issues surrounding HIV/AIDS were among the lead stories on regional newscasts for three consecutive days and were covered by the El Paso Times, Diario de Juárez, and the Las Cruces Sun-News.
In addition to covering other events, such as the Candlelight AIDS Vigil, National HIV Testing Day, and World AIDS Day, CARE Center staff made more than 10 appearances on local English- and Spanish-language television stations directly promoting HIV education, early testing and prevention, the OraQuick 20-Minute HIV Test, and support services for PLWHA. Staff appeared on shows including Good Morning El Paso, the KTSM Morning Show, KINT’s Despierta America, and Live at 5 with Felipa Solis.
El Paso, Inc., a business, lifestyle, and news feature weekly publication, and its sister publications What’s Up! and Southwest Senior all featured the CARE Center and its staff and facilities in special reports focusing on HIV/AIDS. In addition, Gay Friendly Magazine, a magazine directed primarily toward the gay, lesbian, bisexual, and transgender community of the border region and distributed at local businesses, featured the CARE Center’s HIV Negative Card Program as a cover story and conducted a one-on-one interview with America Jones, the CARE Center’s director.
Implementation Challenges
Over the course of the project, implementation of the care model faced multiple challenges. Although the general ideas behind the original model guided intervention efforts, some aspects of that model were implemented differently from how they were initially planned, either because of lessons learned or because of limitations in resources or personnel.
Staff Turnover
The most significant implementation challenge was the hiring and retention of qualified bilingual health care professionals. The issue had a considerable impact on the CARE Center’s ability to implement the model as originally proposed. Although staff turnover affected all levels of service provision, it most substantially affected the nursing component of the model. Because the role of the nurse was central, turnover led to some significant alterations in the model.
The original model called for two registered nurses to serve on each of two care teams. Early growth in the caseload of the center, however, rapidly made it necessary to move to three care teams, and a shortage of bilingual nurses led to a change in team structure. The revised model made use of one nurse per team. With the new team structure, the CARE Clinic was fully staffed with three nurses by the end of the first year of implementation.
Within 8 months, however, the clinic had lost one of its nurses to a higher-paying position elsewhere. The clinic functioned with two nurses for the following 6 months, but by October 2001, only one nurse remained. For 2 months, the remaining nurse filled the role of three and provided care to patients from all three teams. Early in 2002, the clinic filled the two empty positions, and for 6 months, it again fully staffed the revised model, wherein three qualified nurses led the three teams. This period was short-lived; in September 2002, a change in CARE Center administration led to the appointment of one of the nurses as interim director. In 2003, three other nurses were hired and subsequently left, and the CARE Center had difficulty recruiting new nursing staff; the center depended more on physicians and nurse practitioners for patient care during that time. The well-publicized nationwide nursing shortage (especially acute in the U.S.–Mexico border region), challenges in maintaining salaries and benefits competitive with for-profit agencies, and aggressive recruiting practices of local hospitals and private agencies have called into question the feasibility of retaining enough qualified bilingual nurses to maintain a nurse-based care model.
Staffing challenges affected the case management component as well. During the first 2 years of the project, case management services were being provided by unlicensed staff, some of whom had virtually no training in social work. This situation posed some significant challenges to the implementation of the model because nurses were often called upon to perform social work duties. In June 2003, the CARE Center hired its first licensed social worker under the project. Several other licensed professionals were subsequently hired, and although the clinic has also seen high turnover of social workers, trained professionals had a positive impact on the project.
Growth in Client Census
Over the course of the project, the number of HIV-positive clients receiving services at the CARE Center dramatically increased. At the outset, the center served 136 patients. With regular testing and counseling services, the closing of another clinic in the community, and growth in HIV prevalence in the area, the census swelled to 500 by 2004. In many ways, resources and infrastructure that would have easily provided care for a steadily growing population had to be stretched further to cover the sudden increase in need.
Assigning Patients to Teams
The decision to assign patients to separate teams on the basis of surname had appeared reasonable on paper, but this aspect of the model led to another significant challenge. The division of patients turned out to be difficult to maintain and was unwieldy in the day-to-day provision of services. Although patients were divided among teams and informed of their team assignments and care providers, the division was never completely realized.
Although the issues with team assignments were linked to staff turnover, the process posed problems in its own right. If team members were away from the clinic for any reason, including sick leave or vacation, clients had to be assisted by whoever was available. In addition, if several patients from one team needed assistance on the same day, the care manager, social worker, and peer advocate who pertained to that team were overwhelmed with requests. Patients were required to wait to see “their” nurse or “their” social worker when members of another team might be readily available to lend assistance.
Because the lines that separated the teams were so fluid, clients often were uncertain about what team they belonged to; even when they were aware, some patients preferred to see a different provider. The situation made it difficult to preserve the separation of the teams.
Role Issues
Nurses reported that staffing shortages made it difficult for them to adhere to their defined roles. The proposed model had a strong focus on patient education and less responsibility for clinical management. Clinic demands decreased the amount of time that nurses could devote to patient education, and nurses found it difficult to separate clinical duties from other project responsibilities.
Leadership Challenges
Various changes in leadership occurred during the first 3 years of the project. After the departure of the CARE Center’s chief administrator early in the project, new leadership took a different approach to the implementation of the program. In September 2002, the CARE Center again experienced a change in management when a new director was appointed. At that point, the project was again reorganized to reflect the priorities of the current administration.
Evaluation
The local evaluation team at the University of Texas at El Paso (UTEP) psychology department, was responsible for all aspects of data collection and entry. Although CARE Center staff were initially intended to be involved in data collection, issues related to staff turnover and caseload made it difficult for clinic staff to contribute to data collection efforts. Thus, part-time, bilingual graduate and undergraduate student assistants from UTEP aided with that process.
Instrument Development
The multisite evaluation team developed all instruments to be used at the various sites. Locally, the evaluation team assembled a number of additional measures that were considered important and relevant to the patient population. The local battery of tests consisted of various self-administered questionnaires as well as some that required conducting structured interviews. A number of the instruments were previously established measures, and several were newly developed measures.
Local measures were translated into Spanish by a team of certified translators in the languages and linguistics department at UTEP. The team used the translation–back method, in which the English measure is first translated to Spanish by one person and then translated back to the original language by another person. The two versions are then compared by a committee of experts and inconsistencies are remedied. The team made every effort to ensure that the Spanish versions were accurate translations of the English that conveyed the same meaning as the originals.
Data Collection
The evaluation team was provided with numerous in-depth training sessions that covered everything from how to generate a unique record number (URN) to how to conduct a structured interview with a client. The measures were field tested to identify any problems and to rectify them as needed.
The fact that the evaluation team for the La Fe project was responsible for both data collection and data entry set it aside from other partner projects in the SPNS initiative, leading to certain strengths and challenges. Having dedicated data collection personnel permitted the clinic staff to focus on patient care responsibilities rather than evaluation activities. In addition, data collection, entry, and quality control were under unitary control, lending coordination to the process. When an inference was called for during the interview process, however, data collection personnel were at a disadvantage because they did not have a clinical history with each patient they interviewed.
Challenges
Instrument Translation
Good translation of evaluation instruments is essential to the successful outcome of a research project. Although initial measures were translated using the careful translation–back translation process described above, a measure later added to all projects in the SPNS initiative was translated using a less formal process. Some problems with unclear wording and ambiguities in the translation caused confusion among clients and left interpretation up to interviewers. This experience demonstrates the importance of strong translation services when collecting data from non-English-dominant clients.
Interviewer Drift
Over time, people involved in the process of collecting data may gradually depart from the procedures set forth in training, a process known as interviewer drift. Data collection efforts for the SPNS initiative demonstrated some interviewer drift, and data collected further into the project reflected more problems. For example, early in the project, interviewers were careful about following up on missing data, but incomplete data became more frequent over time. Concerns about interviewer drift were discussed during evaluation team meetings, and every effort was made at various points to address the issue and return to protocols.
Recruitment
Recruitment of patients for interviews was handled in various ways throughout the project and was generally initiated by either a nurse care manager or peer advocate who told patients about the project and referred them to the evaluation assistants who conducted the data collection interviews. This strategy was used in the hope that patients would feel more comfortable participating in the project if approached by a staff member they had already met. Coordinating recruitment efforts was a challenge because the nurses were often kept busy with their duties in the clinic and simply were not able to devote the necessary time to patient recruitment. The demands of the clinic and providing care to an increasingly large patient caseload were understandably the first priority for nurses. Appointing an official participant recruiter for the project, perhaps someone from the evaluation team whose sole responsibility was recruitment, might have been a better strategy that could have prevented the gaps in recruitment when clinic staff members responsible for patient recruitment were on leave or unavailable.
Unique Record Numbers
The use of URNs also proved to be somewhat problematic. Although URNs did protect client confidentiality, it was very difficult to track patients longitudinally in an effective manner because of inconsistencies in generating and recording URNs. Problems arose when a patient had a change in last name, used nicknames, or had his or her name misspelled in the records. A special concern became evident in using the URN with Hispanic clients. In Mexico, people are identified by two surnames (maternal and paternal), rather than one. A system that derives unique identifiers from single last names when patients identify by two surnames is difficult to implement because there may be inconsistency in which name is used.
Organizing Data Entry
Integrating multisite and local data entry became an issue of concern because of differences in the organization of data between the multisite evaluation center and the El Paso performance site. Certain idiosyncrasies specific to the two sites made it challenging to effectively manage SPNS initiative data. Rather than entering multisite and local data separately and trying to merge multiple types of data using URNs, a better strategy may have been to enter all data at once, using a uniform system, and transmit updates to the multisite evaluation center on a regular basis as new patients were interviewed.
Lessons Learned
The hardest lesson was simply that reality has a way of setting limits. The CARE Center made every attempt to implement the model as intended, but the model only functioned as planned for short periods of time throughout the project. Recogniz-ing the impracticality of assigning patients to teams, the CARE Center eventually discontinued the regular assignment of patients. Instead, the clinic returned to the basic priorities of the SPNS initiative by providing quality medical and support services by advancing knowledge and reducing barriers to care. It continued to offer a multidisciplinary team approach by providing medical management, case management, and peer advocacy services from all staff to all patients at all times.
Another lesson was that staff communication is crucial in taking a multidisciplinary approach to patient care. Whether future implementation of this model offers the services of one or more teams, effective communication among members of the different disciplines is a necessity. It was evident in the present model that when communication between team members was good, it greatly facilitated the delivery of services and resulted in improved patient care. Conversely, when a given team experienced difficulty with communication among its members, the quality of service was greatly reduced. This lesson should be emphasized in future efforts to implement multidisciplinary models.
The decision to include HIV-positive peers in the care of others brings
strengths and challenges. The provision of HIV services requires that
the people involved be compassionate and dedicated to their profession.
A strength related to involving paraprofessional patients in the provision
of services comes from HIV being an integral part of their lives, rather
than simply a job that they leave behind when their shift is over. They
live with HIV/AIDS every day, and this level of exposure gives them insights
into the illness that other providers may lack.
CASE STUDY The following narrative illustrates the experience of an HIV-positive person presenting for testing services at the CARE Center. “Pedro C.” was a young gay man who had just learned that he was HIV positive. His test results were delivered and explained to him by a peer advocate who sat with Pedro for more than an hour discussing what the results meant, providing comfort, and ensuring him that HIV was not a death sentence but a condition that could be managed. The shock of the results was softened by the opportunity to speak to someone who shared Pedro's experience and knew what it was like to contemplate a life with AIDS. The peer advocate gave Pedro the clinic hotline telephone number to call with any concerns or questions he might have and arranged an appointment for him to meet with a nurse care manager during his next visit. One week later, Pedro returned for his appointment. He was met by the peer advocate and introduced to his nurse care manager. She asked about his language preference and easily transitioned to English or Spanish as required. She took an extensive medical and social history, asking Pedro numerous in-depth questions. She explained about HIV and its life cycle and discussed what “T cells” were and what the term “viral load” meant. She answered Pedro’s numerous questions and cleared up some misconceptions that he had about the illness. Pedro had blood drawn for his first set of lab tests during this visit, and he was told that the tests would provide the doctor with important information about the stage of his illness. At the end of his consultation with the nurse, Pedro was introduced to the bilingual social worker and the peer advocate who belonged to his care team. He was told that they were there to assist him in any way that they could and that the team was responsible for the management of his care. His visit lasted approximately 2 hours. Two weeks later, Pedro returned for his first appointment with the physician. By this time, he had a basic understanding of what HIV infection was and how it progressed. The doctor reviewed the lab results and recommended initiating treatment with antiretroviral medication. The physician referred Pedro to the consulting pharmacist, who discussed the side effects that were sometimes associated with the medications and stressed the importance of taking the pills as prescribed. Although Pedro understood the need for medication and agreed to begin treatment, he was hesitant about having to take so many pills and fearful of experiencing side effects at work, where his coworkers might become aware of his illness. Pedro worked at a telephone call center in a public environment, but he was very private about issues related to his sexuality and to being HIV positive. Not even his family was aware of his serostatus. Pedro began his treatment regimen as his doctor advised but quickly began experiencing side effects, including feeling nauseous during work hours. Because saving face at work was important to him, he stopped taking his medication as indicated by his doctor. The only person he felt he could talk to about this issue was the peer advocate on his care team. Although the physician, nurse, or pharmacist could have advised him about how to manage medication side effects, he felt only a peer could relate to his fear of being stigmatized. The issues that Pedro was facing were brought up during a care team meeting, and the staff decided to refer him for mental health services with a licensed professional counselor. The counselor diagnosed Pedro with major depression and worked with his physician to ensure that he was started on an appropriate antidepressant medication. She also saw him in short-term psychotherapy to help him work through his fears of disclosure and stigma. Because of the complexity of his medication regimen and his difficulty with adherence, Pedro was referred for continued medication counseling with the clinic pharmacist. He completed a questionnaire that revealed the types of difficulty he was having with his medication regimen. Specific goals were set for improving medication adherence, and follow-up visits with the pharmacist were scheduled until his goals were met. The combined efforts of the doctor, nurse, peer advocate, social worker, and pharmacist led to the stabilization of Pedro’s disease markers and to an improvement in his quality of life. His medical team helped him learn how to treat his illness, and his case management team, including the mental health therapist, helped him learn how to live with HIV. The fact that the services were centralized and available at one site made it much easier for Pedro to receive the care he needed. |
Although the inclusion of peers was one of the most successful aspects of the model, the lesson was that it can be difficult to delineate the areas of care in which they should be directly involved and how much input they should have in the decision-making process. The teams sometimes struggled with finding the right balance.
Last, it was clear that the nature of project leadership was directly related to the advancement of the model. It appears to be an advantage for administrators to have some experience in direct clinical management of HIV/AIDS. An understanding of the demands of patient care from a clinical perspective can be useful for an administrator.
Despite those challenges, the consensus among everyone involved in the implementation of the model is that the concept for the model was a strong one, and that the quality of care provided to patients under the model was greatly improved. Because of the model’s strengths, more patients were reached, more problems were resolved, and better services were provided than before the approach was used. Those benefits were especially pronounced when staffing was adequate and client census was manageable.
The most successful aspects of the model revolved around its multidisciplinary approach to patient care. Combining medical and social case management services with peer advocacy under a team approach proved to be an effective means of closing the existing gaps in patient care. Hundreds of PLWHA in the El Paso–Cuidad Juárez area greatly benefited from the centralized, quality care that the CARE Center provided under this project.
References
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City of El Paso Department of Economic Development. (2007a). Business climate. Retrieved July 30, 2007, from www.elpasotexas.gov/econdev/business_climate.asp
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U.S. Census Bureau. (2004). American Community Survey 2003 data profile: El Paso City, El Paso County. Retrieved July 30, 2007, from www.census.gov/acs/www/Products/Profiles/Single/2003/ACS/Tabular/155/15500US48240001412.htm
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West Texas HIV Assembly. (2002, November). West Texas HIV planning area continuum of care plan. El Paso, TX: Author.