Mexican American Men’s Experience of Living With Tuberculosis on the U.S.–Mexico Border

Abstract

The Texas–Mexico border incidence rate of tuberculosis (TB) is 10 times the rate of TB in the United States. Additionally, this area is plagued by antibiotic-resistant TB at a rate that is 70% higher among those living along the border than among nonborder residents. Both the high rate of TB and the emergence of drug-resistant TB increases the importance of controlling TB along the U.S.–Mexico border. Men have higher rates of TB than women, which can be attributed to biological differences and increased environmental exposure. The purpose of this article is to describe the experience of TB for Mexican American men living on the Texas–Mexico border. This a qualitative descriptive study, using participants from a larger study. A purposeful sample was recruited through two south Texas TB clinics. Interviews were audio recorded, transcribed, and translated into English. Data analysis consisted of line-by-line coding, labeling, organizing, and discovering common codes to describe participants’ experience of TB and TB treatment. The participants include 13 Mexican American men. Ages ranged from 22 to 76 years. Only one participant was employed during treatment. Years of education ranged from no school to an associate’s degree. Five themes were discovered: misinformation, delayed diagnosis, stigma, depression, and loss of community. Participants without social support were further isolated and felt a greater burden of treatment. Two participants contemplated suicide and two others told their families to leave them because they were a burden and infectious. The burden of treatment on the patient is great, especially for Hispanic men.

Tuberculosis on the U.S.–Mexico Border

Tuberculosis (TB) is an infectious disease caused by mycobacteria that mostly affect the lungs and is spread through the air when a person coughs, sneezes, or speaks. Although anyone can be infected with TB, it is more common in young adults and in low-income countries (World Health Organization [WHO], 2014). TB incidence is higher on the U.S.–Mexico border (9.9/100,000) than for the rest of the United States (3.2/100,000; Centers for Disease Control and Prevention [CDC], 2013b; Texas Department of State Health Services, 2011). The higher incidence may be explained by the proximity to Mexico, which has an incidence of 23/100,000, which is 7 times the rate in the United States (WHO, 2013c). The CDC (2013a) estimates that there are 300 million legal border crossings each year. The large number of people who move across the Mexican/U.S. border plays an important role in communicable disease transmission. In Texas, more than half of the patients diagnosed with TB are of Hispanic heritage. (Texas Department of State Health Services, 2013).

Gender Differences in Tuberculosis Cases

In the United States, men have higher rates of TB than women at all points across the lifespan (U.S. Department of Health and Human Services, 2010). This uneven ratio holds true across the globe and cannot be explained by access to care (Borgdorff, Nagelkerke, Dye, & Nunn, 2000). Quitugua et al. (2002) reported that the ratio of men to women in the drug-resistant TB cluster was 3.0 to 3:2, compared with the ratio of men to women with TB among all residents, which was 2.3. Multidrug resistant (MDR) TB is resistant to at least isoniazid and rifapentine and requires use of a greater number of antibiotics and increases the length of treatment, the daily number of medications, and the cost of the TB regimen (WHO, 2013a, 2013b). Although MDR only accounts for small percentage of new TB diagnoses, the incidence of MDR TB is up from 2010, and the rate of completion of treatment and cure is below 50% (WHO, 2013a).

Men’s higher incidence of TB infection can be attributed to social as well as biological factors. Men are thought to have more contact with people outside the home, increasing the probability they will come into contact with people with TB (Neyrolles & Quintana-Murci, 2009). Men also are more likely to work as migrant workers, who have a higher rate of TB infection and a lower rate of treatment than the general population (Ciesielski, Seed, Esposito, & Hunter, 1991). However, women have less access to health care and higher rates of mortality from TB (Ciesielski et al., 1991). Nevertheless, access barriers to screening and treatment do not account for such a large difference in rates of infection by gender, suggesting that other social and biological differences account for a larger share (Neyrolles & Quintana-Murci, 2009).

Differences in immune system reactions between men and women also contribute to disparities in incidence and treatment success. Women produce more immunoglobulins (Grossman, 1985), which are needed for the body to fight TB (Turneer et al., 1988) and thereby offer greater protection to females. Women also have an additional gene reaction involved in mycobacterial infection (Fortin, Abel, Casanova, & Gros, 2007). For instance, due to sex hormones, women produce more macrophages in response to the mycobacteria than men (Neyrolles & Quintana-Murci, 2009).

In addition to gender disparities, there also are disparities between people of different races and ethnicities. A TB outbreak in a nursing home in Arkansas showed significantly higher transmission of infection in Black residents than in White residents, possibly due to genetic factors, which may play a larger role than social factors in the spread of TB in some population groups (Stead, Lofgren, Senner, & Reddick, 1990).

Many of the same social and biological reasons may account for Hispanic men having some of the highest rates of TB in the states along the U.S.–Mexico border; in California, Hispanic men have the highest rates of non-foreign-born people with TB (Arizona Department of Health Services, 2012; California Department of Public Health, 2014; Texas Department of State Health Services, 2011). For example, Hispanic men along the border are more likely to be migrant workers or cross-border travelers from Mexico and Central American countries than are women (Mosisa, 2013). However, demographic and socio-economic factors may play an additional role in the high rates of TB infection in Hispanic men. The border experiences more hardship when compared with the rest of the country with high rate of poverty, poor housing, and lack of access to health care (CDC Border Health Policy Forum, 2006), which may contribute to the spread of the disease.

Although Mexican American men living on the U.S.–Mexico border have the highest burden of TB in the United States, little is known about their experience with the disease (Munro et al., 2007; Zuñiga, 2012). In fact, very little has been published about the TB experience among Mexican Americans besides Moya and Lusk’s (2013) qualitative study, which identified the effects of stigma in both men and women treated for TB on the U.S.–Mexico border. It is important to understand the male perspective on treatment, not only because men have the highest rates of TB but also because traditional male cultural expectations may alter their perspective, experience of treatment, and ultimately adherence to treatment. Incomplete adherence to TB treatment contributes to the men’s suffering (e.g., discomfort, illness, loss of income) and also affects their families’ well-being. Incomplete TB treatment seriously affects the public’s health by contributing to drug-resistant, MDR, and extremely-drug-resistant strains of TB that are associated with higher rates of mortality. Therefore, the purpose of this study was to describe the nature of TB diagnosis and treatment for Mexican American men living on the U.S.–Mexico border.

Method

This qualitative descriptive study was a secondary analysis of a larger qualitative (hermeneutic phenomenological) study in which Mexican American adult men and women who had TB and were living on the U.S.–Mexico border were interviewed about their experience of living with TB (Zuñiga, Muñoz, Johnson, & Garcia, 2014). Participants self-identified as being of Mexican heritage and were receiving treatment in the United States at the time of the interview. For the original study, institutional review board approval was provided by a large university in central Texas. Participants were recruited during summer and fall 2012 from two TB clinics located in Cameron and Hidalgo counties in Texas. During data analysis of the first study, some of the themes that emerged were exclusive to the male participants. This prompted the need to analyze the men’s data separately. A qualitative descriptive design was chosen for the secondary analysis because the goal was to describe and characterize the men’s unique experience with TB diagnosis and treatment. The contents of the interviews were coded systematically, looking for patterns in the data, then confirmed by counting the occurrence (Sandelowski, 2000). Naturalist inquiry was used as a framework because it focuses on how people behave in their natural setting (Frey, Botan, & Kreps, 1999).

For the larger study, the participants were recruited from two TB clinics in McAllen and Brownsville, Texas. The participants were informed about the purpose of the research study by the clinic staff; if they were interested in participating in the study, the researcher then screened the participant and scheduled the interview. Other methods of recruitment, including newspaper and radio advertisements, were also used, but only direct contact with the researcher was successful in recruiting participants. This could be attributed to fact that many of the study participants stated that they did not have a telephone with which to respond to the advertisements. It is a limitation of the study that the men were not interviewed an additional time for this analysis.

Semistructured interviews were conducted in locations selected by the participants. The interviews were conducted in parks, libraries, restaurants, and clinic offices although the researchers made an effort to keep the participants in their own environment when possible, in accordance with the principles of naturalistic inquiry (Erlandson, Harris, Skipper, & Allen, 1993). Participants were asked to describe their experience with TB and TB treatment and specifically about the experience of informing their families that they had been diagnosed with TB. The participants were interviewed in the language of their choice—English, Spanish, or a mixture of English and Spanish. All interviews were audio recorded and transcribed by a professional transcription company, and the Spanish language interviews were transcribed and translated by certified translators into English in one step. The Spanish language interview transcripts were verified by bilingual members of the research team by listening to the interview in Spanish and reading the transcript in English. Only minor errors were encountered and they were edited for accuracy.

Data analysis was consistent with qualitative descriptive methods described by Sandelowski (2000). The transcripts were thoroughly read several times with the aim of immersing the researcher in the data. Second, the transcripts were coded line by line (Cohen, Kahn, & Steeves, 2000). Then, the contents of the transcripts were coded for general themes. Codes were created through a reflective process and were modified with new insights (Sandelowski, 2000). The researchers used some preexisting codes as well as codes that naturally developed from the interviews (Sandelowski, 2000). The preexisting codes were gleaned from the larger study, the research team, and literature reviews, and then codes related to feelings of stigma, isolation, and machismo were included (Zuñiga et al., 2014). Finally, the interviews were analyzed using NVivo software for word counts to confirm the pattern and overall themes. Keywords and codes were counted for frequency, and the codes with the highest frequency are discussed here.

Findings

Sample

A purposive sample of 13 men was included in this study. All of the participants were Mexican Americans living in the United States at the time of the interview, although some of the men stated that they were born in Mexico but had recently immigrated to the United States. About half of the men were employed, working in trucking, migrant farming, food services, and construction; however, only one participant was able to work continuously during TB treatment. He also was the most educated, with an associate’s degree. The average number of years of education was 8.5 (range of 0-13 years), with one man having no formal (school) education. The average number of persons living in the household was nearly four. Three of the men chose to be interviewed with their wife or girlfriend present.

Themes

Five common themes emerged during content analysis: delay in TB diagnosis, lack of knowledge, depression, loss of community, and stigma, which was interwoven into all the themes.

Delay in Tuberculosis Diagnosis

The majority (n = 11) of the participants experienced a long delay in being diagnosed with TB. Although it is difficult to know with certainty how long they had TB prior to diagnosis, one participant stated that he had coughed up blood for 2 years before he was diagnosed. The participants experienced symptoms ranging from bloody cough to drastic weight loss. One participant thought he might have HIV because of his symptoms. Another did not seek treatment because he was an illegal immigrant and did not want to be deported. Although patients with TB are usually treated as outpatients, four of the study participants required hospitalization during their initial diagnosis and treatment because their cases were more severe and needed closer monitoring. Others saw several doctors before they were given the diagnosis of TB. It can be assumed that they were actively contagious during the extended delay because they were symptomatic.

At first I didn’t know. I was losing weight, I ate, but I didn’t know what I had. I went to see the doctor and they never told me anything. I realized that when I walked for a while, or if I ran, I got very tired and I didn’t understand why that was happening. (Participant 12, translated from Spanish)

I was losing my appetite, the desire to walk, the desire to work; my car was broken and I was desperate to fix it but I didn’t have the energy. A neighbor told me, “Be relieved, go to the doctor. You’re feeling bad, go to the doctor. Leave the car, that’s something . . . ” When I went in on a Monday [the doctor] told me “I just wanted to see you because you’ll go to the hospital”; I said, “To the hospital?” and he said “Yes, to the hospital.” And he didn’t let me go back home. He sent me to the hospital, and I was there about one month. (Participant 8, translated from Spanish)

Lack of Knowledge

The participants had varying levels of TB knowledge prior to diagnosis. Some of the participants were unaware of the disease prior to the diagnosis, whereas others were aware of the disease’s signs and symptoms. During the interview process, the researcher confirmed these misconceptions with the nursing staff (personal communication with E. Guanjando, RN). The nurse stated that while the staff continually educated their patients on TB transmission, she reported that it was difficult to change the patients’ preconceived ideas about TB. For example, most participants said they tried to use separate utensils, linens, and living spaces in order to protect their families from contracting TB, although this practice is not necessary.

I ate on one plate that she shouldn’t eat from that . . . She shouldn’t cover me with the same blanket as hers. Because it’s very contagious. Maybe they will kick me out of the house. (Participant 13, translated from Spanish)

Participants misunderstood the TB screening. These participants thought that the TB skin test to detect TB was actually the bacille Calmette-Guerin (BCG) vaccination that is given in Mexico but not in the United States. The BCG vaccine is administered as part of the regular vaccination schedule for infants in Mexico to prevent tubercular meningitis in newborns (CDC, 2012). However, the BCG vaccine has inconsistent effectiveness in preventing other types of TB, such as pulmonary TB in adults (CDC, 2010).

When they told me I felt really bad and I wanted to leave my house. But then the doctors and nurses told me that I was not going to infect them. They vaccinated my grandchildren and thank God no one was infected. I stayed in my bedroom alone, I didn’t even want to eat with them. I used to cook my own food and I ate in my bedroom . . . (Participant 18, translated from Spanish)

Depression

All but one of the participants talked about being depressed or sad during diagnosis and treatment. Depression has been associated with TB treatment, especially for older patients (Adem, Tesfaye, & Mohammed, 2014). Low perceived social support, multiple symptoms, and drug side effects have all been associated with depression and TB (Masumoto et al., 2014). Many of the men cried during the interview when talking about their families. It could be as a result of the internalization of stigma that patients reported many instances of depression. Two participants stated that they had thought about committing suicide to end their suffering. In order to protect their families, two others asked their families to leave them. Participants were not asked directly whether they were depressed; rather, they were asked how they felt when they told their family and friends of their TB diagnosis.

My sister from Chicago was upset because I wouldn’t let her come. I wouldn’t let [my family] come, I was desperate and I even thought about killing myself because of this illness. (Participant 18, translated from Spanish)

Now they know I’m in treatment. At the beginning, when they told me I had tuberculosis and it was a very dangerous disease, I was depressed. (Participant 8, translated from Spanish)

When they told me I had tuberculosis I was also sad because I thought I would infect everybody else. (Participant 15, translated from Spanish)

You get depressed…the lack of security…and you think that you’re not going to get away from it, that you’re not going to be well after it. I got angry sometimes. I say, “Why does this happen to me? Why did I get tuberculosis? I see other people who are very healthy, people who drink and do drugs and nothing happens to them. Why me if I am a healthy person, and active person, why do I get that?” I don’t know. (Participant 2, translated from Spanish)

Loss of Community

During the treatment of TB, patients are placed in isolation for a few weeks after beginning treatment. They are instructed to wear masks when they leave the house during these weeks in order to prevent the spread of TB while they are still infectious. The men in this study expressed a loss of community that started at the initial isolation precautions, then extended after the prescribed time. Participants chose to leave their communities in order to prevent spreading TB, so they did not continue to engage in their normal activities or go out very often. Others were forced out of their communities; they lost some of their friends and family members avoided direct contact with them.

There was separation from outside people, but not among the four of us . . . just the four of us. We were enclosed in here. (Participant 17, translated from Spanish)

I thought about killing myself but I didn’t know what to do. I thought I had the bad luck to get that illness that was floating on the air. They asked me where I had been, and I said I only went to St. Joseph’s Church and back home. But I stopped going to the church and I decided to stay inside for some time. What I do is when I get home I turn on the TV because they are broadcasting a mass. I used to go to a bar in [Mexico] because it was close to my house and I used to play pool with my friends. I have many retired Mexican friends and we used to get together on Saturdays and Sundays to play pool, I would drink a beer and then go back home. But I haven’t gone back to a bar yet. (Participant 18, translated from Spanish)

Stigma

Stigma is the culmination of all of the other concepts. Stigma is defined as an undesirable attribute that would cause a person to be socially rejected or tainted (Goffman, 1963). The infectious nature of TB has been deemed undesirable and can lead patients to feel guilty for spreading it to others and shameful for contracting the disease (Courtwright & Turner, 2010). The two types of stigma are called enacted and perceived (Macq, Solis, & Martinez, 2006). Stigma is first experienced in a social setting (enacted) and then it can be internalized, which makes the person feel inferior (perceived). It is clear from the participant interviews that these participants experienced both types of stigma as a result of their TB diagnosis. In order to shield themselves from further stigmatization, they kept themselves in isolation for longer than was necessary, causing many to lose contact with family and friends.

I feel fine but people start talking, that he has this and that. “He’s infected,” they say. That’s why it’s better not to leave the house. (Participant 13, translated from Spanish)

I felt sad, because I remembered that when I was small if someone had tuberculosis you shouldn’t get near to that person and that came to my mind. But I didn’t feel any pain, I never felt any pain. (Participant 9, translated from Spanish)

Sometimes a lot of people, they still don’t come around because they think that they’re gonna get sick. They’re afraid to come near because, like I said, it is contagious and when it gets to that stage, it is contagious. (Participant 11, translated from Spanish)

Discussion

TB and its treatment place a high burden on patients because of its associated stigma. These findings agree with those of Moya and Lusk (2013), who reported that stigma was a barrier to accessing health care services and associated with decreased health and emotional distress. Every participant in this analysis spoke of feeling stigmatized, and for some, depression was a result of the internalization of this stigma. To reduce the discomfort of stigma, participants isolated themselves, resulting in loss of interaction with their communities. Delay in diagnosis and treatment also may be a result of perceptions of stigma, or may be attributed to the lack of health care resources in the region. Lack of knowledge about TB (at the individual and community levels) may be the root of stigma. These findings are similar to those of Kelly (1999), who interviewed patients with TB in Chicago and reported that most of her interview participants had kept themselves isolated from their families and communities for longer than was recommended by their health care providers (HCPs). The participants in that study expressed that they felt like a menace to their community. Family support is essential for these Mexican American men with TB. Men without family support reported feeling extremely depressed, to the point of having suicidal thoughts.

For the men in this study, stigma was an intrinsic part of the experience of TB treatment and plays a part in all of the other themes. Feeling stigmatized is not unique to Hispanic men, but the manifestation of that stigma has a cultural context. Traditionally, Mexican Americans adhere to explicit gender roles and behaviors. The concept of machismo speaks to the cultural expectation for men to be strong, in control, and the providers for their families (Marín & Marín, 1991). While the term machismo was one of the codes used, this theme was not reported to be pervasive in the interviews. This is significant because the men were put in a position that challenged their ability to express machismo. Most of the men were unable to work because of their TB diagnosis and they could not fulfill the traditional role of being their family’s head of household and provider. Rather than expressing strength, and they spoke of feeling physically and emotionally weak.

HCPs should be keenly aware of the stigma, powerlessness, and loss of masculinity that may be felt by men being treated for TB. Additional support, screening for depression, and patient counseling and education may be necessary to decrease the burdens felt by the men in TB treatment. Additionally, given the delay in diagnosing and treating TB, HCPs should engage in public health efforts to screen men for TB to identify cases of TB earlier.

The limitations of this study include the limited number of interviews and participants and they study’s limited generalizability. Additionally, the participants were self-selecting, which may bias the findings. Future research could include more men from different regions of the U.S.–Mexico border beyond the lower Rio Grande Valley.

Conclusion

Although the incidence of TB in the United States is decreasing every year, the burden of TB and its treatment has not lessened for people who are recent immigrants or who have no insurance and are diagnosed and treated on the U.S.–Mexico border. HCPs must strive to provide culturally appropriate and compassionate care to patients diagnosed with stigmatizing diseases. The findings of this study also reveal the importance of providing more social support and education to patients diagnosed with TB and their families and communities.