Abstract
For nearly 30 years, Programa Compañeros Inc (Compañeros) has worked in Ciudad Juarez, Chihuahua, Mexico, to ensure that vulnerable populations can exercise their rights to receive HIV and substance abuse prevention and treatment services. Compañeros staff has worked to ameliorate the negative results that limit access to care to the most vulnerable individuals: those who are poor, homeless, sex workers, addicted, and others whose life context put them at greater risk for being infected with HIV. With support from the MAC AIDS Foundation, Compañeros has expanded its capacity to deliver services to persons living with HIV/AIDS (PLWHA) and to HIV-vulnerable populations. This short communication describes findings from an internal evaluation conducted to investigate the effectiveness of the MAC AIDS-funded navigator-based program implemented at Compañeros.
Background
In 2002, Compañeros developed and evaluated a peer-manager-based strategy labeled the Transcultural Case Management (TCM) in conjunction with several community-based organizations and the University of Texas Houston School of Public Health. The TCM model utilized peer case managers to help decrease HIV treatment costs by teaching people living with HIV/AIDS (PLWHA) strategies on how to improve adherence to medications, to monitor their overall health status, and to seek medical care at the onset of even minor ailments. 1,2 The TCM was influenced by prior research on improving medical treatment outcomes based on nonclinical approaches. The TCM model was developed between 2003 and 2005 and closely followed the program development suggestions of Fleishman and Markson designed to increase contact between patients and health care providers and the frequency and quality of these contacts. Fleishman 3 and Markson et al 4 had shown that the more care the HIV-seropositive patients receive, regardless of the expertise of the caregiver, the better their general well-being and health outcomes will be. Increased contact between patients and providers positively influences their medical outcomes, and the quality of the encounter appears to be the most important factor in improving health.
The model was also based on Freirian pedagogical principles applied to health education. Paulo Freire, 5 the Brazilian philosopher and pedagogue, suggested that the role of any educator—TCM peer case managers, in this case—was to use those heuristic devices that learners employ to understand and navigate their world and to codify them into culturally relevant themes in order to help individuals better understand new concepts.
The TCM peer case managers’ inside knowledge on how to better access health and human services combined with their linguistic abilities to translate medical terminology into lay terms improved the quality of the interaction between patient and medical providers and the quality of the care delivered. In an evaluation of the TCM program, 1 patients’ satisfaction improved in 3 main areas: assistance with obtaining care, management of stress, and information about and enrollment into clinical trials. Peoples living with HIV/AIDS (PLWHA), using the newly acquired knowledge provided by the TCM peer case managers, felt able and empowered to inform medical providers on how they view their health conditions and, furthermore, to suggest solutions they considered as more conductive to better management of their disease. Moreover, there was a measurable improvement in their health status since patients reported that their visits to hospital emergency departments decreased on average from 1.84 visits to 0.74 visits per month.
At the same time the TCM peer case management program published the findings from its pilot, 5 other projects funded by Health Resources Services Administration (HRSA) also published the findings on how to improve access to HIV care. 2 But it was not until 2013 that the HRSA funded a special Project of National Significance (SPNS) initiative that focused on culturally appropriate interventions to improve access as well as retention among Latino(a) populations. With funding from the MAC AIDS Foundation, 6 in 2012, Compañeros adapted the TCM model to serve the most marginalized and underserved PLWHA, which traditionally have less access to and retention within the health and human service system. The funds were also used to increase the time involvement of Compañeros’ clinical staff with patients and to provide a food pantry, clothing, and hot meals and to deliver other support services. Most of these services are offered in an existing community center, while others are delivered in various neighborhoods from a roving clinic. The intervention specifically targeted PLWHA who were homeless, sex workers, addicted to drugs, and those whose life context put them at greater risk for being reinfected with HIV. The HRSA SPNS initiative was one of the first public health adaptations of the TCM approach, with interventions targeting HIV-infected Latino/a subpopulations. 7 The 10 demonstration projects in this initiative are set to be concluded in 2018.
The description of the peer case managers’ contribution began to appear in the health literature in 2007 under the new rubric of “navigation.” 8 With the emergence of new treatment paradigms, the function of a navigator in optimizing entry and retention in HIV care became clearer. With the newly acquired funds, 6 new peer case managers, renamed “navigators,” were contracted and trained to provide services aimed at optimizing care for the PLWHA community. The 6 navigators were trained to extend their role to help patient navigation of the health care system. Public health professionals, including the Executive Director of Compañeros, a master-level social worker, conducted the 3-day training. The TCM training manual was adapted to reflect changes in the Mexican health and social service systems to ensure optimal and accurate referrals. 9
The newly hired TCM navigators’ previous training and life and work experiences make them ideal “translators” of vernacular language and social customs between PLWHA and medical doctors, nurses, psychologist, social workers, and other clinical providers. They were further trained to become mentors to their clients and help them improve their access to health services and better utilize ancillary support services. Navigators were also trained to be able to identify emerging health issues with their clients, improved linkage to care services, reduce barriers to access to care, improve retention in care, and an overall improvement in self-reported quality of care and life.
Methods
In order to evaluate the effectiveness of the MAC AIDS-funded navigators, a survey was conducted during the last quarter of 2014 using a convenient opportunity sample of 20 female, 47 male, and 4 transgender clients for a total of 71 clients drawn from a population of nearly 400 PLWHAs. The inclusion criteria for the study were that clients had to be 18 years of age or older and had been receiving navigator-based services at Programa Compañeros for at least 6 months.
People living with HIV/AIDS meeting the inclusion criteria were invited to participate by the intake receptionist during their visits to the clinic within the space of 1 month. The 71 PLWHA who consented to participate in the study were interviewed by 1 of the available navigators. In order to minimize bias, care was taken to ensure that the navigator conducting the interview and selection was not the one assigned to the PLWHA.
When enrolling for services at Compañeros, clients agreed to allow their data to be used anonymously for epidemiological research and to have it reported to public health authorities. For this study, an external review board was not consulted, but the questionnaire was reviewed by Compañeros board members, as is customary for studies that follow in the federal government list of exempted categories. 10 However, all participants were given an informed consent statement in which they consented either verbally or in writing to be part of the study and to complete the survey.
In the survey—included as Appendix A—participants were asked to answer confidential questions about their knowledge and attitudes related to HIV transmission and treatment, their experience with the care they had received, and their knowledge about HIV/AIDS information and resources available to them. The interview was conducted in Spanish at a time and place convenient to the participants. The interview responses were entered in an Excel spreadsheet and imported into an SPSS file containing the variables labels and codes. The data were cleaned and verified before a frequency analysis was conducted.
Results
Of the 71 participants, 28.2% were female, 66.2% were male and 5.6% were transgender PLWHA. The distribution of age in the sample was as follows: 18 to 29 (25.4%), 30 to 39 (42.3%), 40 to 49 (14.1%), or 50+ (18.3%). Most reported being single (54.9%), born in Chihuahua (69.0%). Close to half had a high school education or a degree (47.9%). Before being diagnosed with HIV, the majority had heard of HIV and AIDS (83.1%) and 57.9% felt HIV was a serious disease and 91% understood it could not be cured.
When asked how a person can transmit HIV, all participants indicated that it was not possible through a handshake, through the air when a person with HIV coughs or sneezes, and through eating from the same plate of a person with HIV, but it was possible through sex without a condom. The majority of participants feel HIV can be transmitted through sharp objects (knives; 84.5%), by someone who has used a syringe used by a person with HIV (88.7%), by having sex with someone who is HIV positive and not using condoms (93%), and by people with multiple sexual partners or sex workers (84.5%). The majority of participants did not feel that HIV was only transmitted through the poor or homeless (83.1%), homosexuals (80.3%), drug and alcohol users (74.6%), people with tuberculosis (83.1%), or people who have been in prison (77.5%), or using a public restroom (98.6%).
Almost all participants understood that home or herbal remedies (100%), resting at home without taking antiretroviral medications (98.6%), praying (98.6%), and sunbathing every day (93%) are not ways to care for a person with HIV/AIDS, while using specific drugs prescribed by a health center (90.1%) and using the prescribed drugs regularly and without interruptions (85.9%) were ways to treat HIV.
When asked about their perceived health status, 81.7% of participants reported good to excellent health status, 17.6% sought medical attention at least once in the past month for other health problems that were not HIV related, and primarily sought services at the Seguro Popular (70.4%) and Center for the Prevention and Treatment of AIDS and STIs (CAPASITS) for HIV-related services (73.2%). Most clients (70.5%) reported having to drive at least 30 minutes to receive medical services. Besides seeking services at Programa Compañeros (58.2%), clients do not seek them from government institutions (88.2%), religious associations (98.5%), or from social organizations (97.0%).
Over three-quarters of participants sought health care within 1 month of diagnoses of HIV. Almost all (91.5%) participants had told someone about their HIV status, including their doctor (78.9%), close friend (53.5%), health worker (46.5%), other family member (43.7%), spouse or domestic partner (33.8%), parent (29.6%), or child (19.7%).
Of the services offered at Compañeros, participants have sought services from a professional counselor (53.6%), a navigator (peer case manager, 49.3%), membership on a support group (44.9%), nurses (33.3%), psychologists or social workers (31.9%), a member of the support group (29%), the medical doctor (26.1%), and people who work in the food pantry (20.3%).
Participants reported that if they suspected one of your relatives or acquaintances had HIV or AIDS, most indicated they would refer him or her to a health center (77.5%), medical doctor (73.2%), a pharmacy (54.9%), or provide him or her with a referral to Programa Compañeros (76.1%) or the CAPASITS (71.8%).
Once they are diagnosed with HIV, participants took advantage of the free health care services only when they had an appointment (67.6%), when they got sick and thought symptoms could be related to AIDS (29.6%), when they thought their treatment was not working (34.3%), when family and friends pressure them to go (12.7%), or when a health care provider came looking for them (7%).
The reasons clients decided not go to a health center or medical institution were mainly related to a lack of trust in the quality of health service (31.8%), not liking the attitude of the medical staff (22.7%), being afraid of receiving a negative result (16.7%), the cost (15.2%), transportation problems (15.2%), not knowing who to ask for help (13.6%), and not being able to get away from work during office hours (7.6%).
In general, 84.8% of participants rate the quality of the services received at Compañeros as very good or excellent and gave this same rating for care received from medical or nursing staff (80.0%); counseling and social work (75.4%); and ancillary services such as food, clothing, bathing, and so on. (58.3%).
Almost all (92.7%) describe the information they now have about HIV and AIDS as very comprehensive. Almost one-third (30.4%) of the participants were informed about their HIV and health status at Compañeros when their laboratory results were explained to them. This included understanding the meaning of their viral load and CD4 count (78.3%), their rights and obligations (71%), and what the antiretroviral treatment entailed (65.2%) during their medical consultation. Most also got information through educational materials, such as brochures, magazines, and so on (75.4%); counseling (69.6%); and the information library (15.9%).
As a result of receiving comprehensive care, participants felt they had increased their ability to take care of themselves and to attend to all their needs (94.2%), schedule and attend medical appointments (92.9%), defend their human rights (88.6%), access materials and services (85.7%), teach other people with HIV to take care of their health (85.5%), attend another health service when given a referral (82.9%), and resolve situations when no antiretroviral therapy is available at the pharmacy (62.7%).
Discussion
The MAC AIDS navigators program was quite successful in improving the quality of care and life of the PLWHA who were clients of Compañeros. Navigators were instrumental in the enrollment of almost all (99%) patients in HIV/AIDS treatment, and the liaison work of the navigators allowed participants who did not have health insurance, and who comprised 71% of the total sample, to enroll in the federal health insurance program known as Seguro Popular (Popular Insurance). Enrollment in the Seguro Popular is a requirement for patients to qualify to obtain care at specialized HIV/AIDS clinics run by the Mexican government, known as CAPASITS. Two of the 6 newly hired navigators were dedicated exclusively to facilitate linkages between clients and the CAPASITS, where almost all (90%) of the PLWHA in Ciudad Juarez obtain their specialized care and their monthly supply of antiretroviral medicines.
Navigators appear to be a significant asset in improving PLWHA’s sense of empowerment vis-à-vis the health and human services system. Almost all (92%) of the patients in the sample attribute their ability to follow up with their medical appointments to the navigator and overall four-fifths believe that the navigator has taught them skills to better care for themselves, to increase their ability to advocate for themselves, to be able to obtain needed resources and services, to maintain linkages within the health and human service system, and most importantly, that the navigators have taught them skills that enable them to teach others about access to HIV care and their rights.
Although navigators have been successful in improving client’s knowledge about HIV, there are still gaps in the knowledge of how HIV is transmitted and treated, and some old beliefs about both domains still persist. Fortunately, only a small minority (between 1% and 7%) believes that handshakes and sneezing can transmit HIV and that sunbathing, rest, and prayer can be HIV treatment modalities. To correct these misconceptions during the interactions with clients or during presentations, navigators discussed these fallacies and presented to their audiences with the correct facts. The navigators attributed this lack of knowledge as a direct result of the decrease in HIV/AIDS awareness campaigns by government entities in the media.
Some PLWHA state that the reasons they don’t go for medical care at a public clinic or medical facility are due to transportation issues mostly related to cost, distance of the medical facility, and the daytime hours of operations of the clinics. Navigators, while validating those reasons, claim that the major barriers preventing the utilizations of public clinics are the lack of trust in the quality of the medical care and the poor attitude of the medical staff. Both of these obstacles affect medication adherence, and one-fourth of PLWHA voicing misgivings about taking the prescribed medicines or complying with the mandated schedule. Despite all these misgivings, after 6 months of support by the navigators, more than four-fifths of the sample report to be in good to excellent health.
From a cultural perspective, it is interesting to note that the tradition to self-medicate, often with the help of the local pharmacist, is still present. In the recent past, Compañeros had developed a successful program to educate pharmacy personnel about HIV treatment protocols and the importance of referral to the appropriate care venues, but given the high turnover rate among pharmacy personnel, it is more cost effective to employ the MAC AIDS navigators for this educational intervention.
Limitations of the TCM Intervention
The main limitation of the study was the inclusion bias inherent in the opportunity sample used to recruit the study participants, which, although representative of the PLWHA receiving services at Compañeros, is not generalizable. The choice of sampling methodology and the small number of participants interviewed were inevitable, given the financial constraints of the evaluation, which was not part of the MAC AIDS funding. Another limitation was that the study was conducted at the facilities of Compañeros, which may have biased some of the answers. Moreover, since there were no biomarkers for the outcomes described, the results were based on the clients’ perception of the level of care received at Compañeros.
Recommendations
Compañeros’ experience with navigators suggests that they should be made an integral part of health care institutions staff serving vulnerable clients who are often marginalized by the larger community. In particular, given the barriers associated with access and retention, HIV/AIDS treatment agencies should be funded to develop programs with a similar peer-based link between providers and clients to improve health care practices and adherence to treatment.
The modeling and instrumental support provided by navigators increase the communication between clients and providers, expose them to the disease coping mechanisms of other clients, and teach them how to become engaged in the social and work life of the community. The decreased feeling of anomie helps increase adherence to treatment among PLWHA, which result in positive health outcomes and an increased quality of life.
This brief evaluation of the MAC AIDS-funded program demonstrates that the use of navigators is an effective model for improving the level of care of vulnerable clients on the US-Mexico border and would be worthy of replication in other Latino and Latin American settings.
Footnotes
Appendix A
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.