To prepare for this week’s assignment, visit the CDC Wonder site in this week’s resources. Investigate the incidence and prevalence of TB in your community ( Charlotte County Fl.) What information did

E-mail: [email protected] Accepted: January 12, 2014 doi: 10.1111/jnu.12071 Abstract Purpose: This study produced a rich description of the lived experiences of tuberculosis (TB) treatment among Mexican Americans living in the Lower Rio Grande Valley (LRGV) of Texas.

Design: This qualitative study used phenomenological methodology, guided by Merleau-Ponty’s philosophical framework, particularly his theories on mind–body in uence, fabric of relationships, importance of culture, and equi- librium. A purposive sample was recruited through TB clinics in four south Texas border counties: Hidalgo, Cameron, Starr, and Willacy, which make up the LRGV. Interviews from 18 participants—5 women and 13 men—were con- ducted in the participant’s preferred language. Interviews were analyzed for common themes as described by Cohen Kahn and Steeves.

Findings: The majority of interviews were conducted in Spanish. Five themes were discovered: (a) day-to-day life during Directly Observed Therapy treat- ment, (b) signs and symptoms, (c) familismo, (d) living on the border, and (e) stigma.

Conclusions: TB treatment can create a high level of patient burden. The participants in TB treatment in the LRGV on the Texas-Mexico border reported a high level of stigma. Due to this stigma, patients struggled to nd a balance between exposure to stigma and the support from family that buoyed them through treatment.

Clinical Relevance: The ndings support the importance of addressing stigma and the resulting sense of isolation in patients being treated for TB, per- haps through bolstering support from family and healthcare providers, which is relevant for public health professionals working in regions with high rates of TB. Over 20 years ago, the World Health Organization (WHO) recommended that patients with active tuberculosis (TB) be monitored on a daily basis through the Directly Ob- served Therapy Short Course (DOTS) program to improve outcomes, decrease incidence, and decrease resistance to treatment (WHO, 2011). In DOTS, a trained healthcare representative watches a TB patient swallow each dose of TB medication, ensuring that the patient takes every dose of the prescribed antibiotics. TB is the only disease where this method of monitoring is practiced (Volmink & Garner, 2007).

Since the implementation of DOTS, the incidence of TB has decreased; however, the United States has not reached its goal of TB elimination (Healthy People 2020, 2012). TB continues to burden the U.S.–Mexico border, with a rate 10 times the national rate (Texas Department Journal of Nursing Scholarship, 2014; 46:4, 253–262. 253 C 2014 Sigma Theta Tau International TB Treatment on the U.S.–Mexico Zu ˜ niga et al. of State Health Services, 2012). Several factors contribute to this higher incidence. First, there is a gradient increase of TB rates with the migratory ow from Mexico, a region of high TB rates, to the United States, a region of lower TB rates. Second, the population’s low socioeconomic status frequently results in crowded housing and limited access to health care (Centers for Disease Control and Preven- tion, 2001). Finally, TB may spread more rapidly because of the dif culty of managing an infectious disease across an international border (de Cosio, Diaz-Apodaca, Ruiz- Holguin, Lara, & Castillo-Salgado, 2010).

The Lower Rio Grande Valley (LRGV) is one of the re- gions on the U.S.–Mexico border that experiences high rates of TB. This region consists of Hidalgo, Cameron, Starr, and Willacy counties at the southernmost tip of Texas, bordered by the Gulf of Mexico to the east and the Rio Grande River to the south. The LRGV, like other areas along the U.S.–Mexico border, is a region where the mainstream U.S. culture interacts with the predom- inately Mexican culture (Richardson, 1999). Approxi- mately 90% of LRGV residents identify themselves as His- panic and predominately speak Spanish in their homes (U.S. Census Bureau, 2013). The region is also charac- terized by lower educational attainment, with one of the highest high school dropout rates in the state, and low- est per capita income (Mier, Flores, Robinson, & Millard, 2004). Additionally, the LRGV has been designated as a medically underserved region, with few medical pro- fessionals serving the community (Heath Resources and Services Administration, 2013). Residents of the LRGV frequently cross the international border to purchase medications, seek medical treatment, socialize, and work in Mexico (Sanderson, Brown, & McIntyre, 2004).

This study describes the lived experience of TB treat- ment for Mexican Americans with active TB living on the U.S.–Mexico border in the LRGV. Understanding TB treatment from the patients’ perspectives is foundational to future interventions aimed at preventing and treating TB.

Methodology Design This study used a descriptive phenomenological ap- proach to explore the lived experience of TB and TB treatment among Mexican Americans living in the LRGV along the U.S.–Mexico border. The approach allows the exploration of living with TB and its treatment and by using a person’s life experience as evidence to answer questions and describe a phenomenon in order to bet- ter understand it (Sadala & Adorno, 2002). The ap- proach is guided by Merleau-Ponty’s (1962) philosophy of phenomenology. According to Merleau-Ponty (1962), a phenomenological description includes everything with which a person (e.g., one undergoing TB treatment) comes into contact throughout the course of life, includ- ing objects, people, and events (Streubert & Carpenter, 1995).

Recruitment and Enrollment Recruitment took place between August and October 2012. Participants were recruited during their daily ap- pointment at the county clinic. The interviews were con- ducted at the participants’ homes ( n= 4), nearby parks ( n= 3), the county clinics ( n= 5), libraries ( n= 3), or restaurants ( n=3). Most of the participants did not have access to phones or transportation. One participant was considered homeless by the public health nurses. Partici- pants with phones would receive a phone call to con rm time and place of interview. Those without phones would get no reminder noti cation of the interview appoint- ment. There were no cancelations and no one missed an interview. Most participants arrived early to their appointments.

English– and Spanish-speaking Mexican American adults who were currently receiving DOT treatment were recruited from two counties of the LRGV, Cameron and Hidalgo. Researchers recruited and screened sub- jects and scheduled the interviews. Consent was obtained prior to the interview. The university institutional review board committee approved the study and waived written consent.

Data Collection Procedures Data collection consisted of in-depth, semi-structured interviews in the participant’s home or in another mu- tually agreed upon location. The researcher scheduled the appointments during the screening process. The in- terviews were conducted in the participants’ homes or clinic, public libraries, restaurants, and parks as agreed by the participants’ preference. Interviews lasted up to 1 hr and were audio recorded. Spanish speaking participants were interviewed in Spanish with the assistance of an interpreter. Both interpreters were trained in qualitative research and interview techniques in formal classes as part of their graduate degree programs. The interpreters reviewed their interview transcripts and participated in debrie ng about questions and responses with the researcher.

Data Analysis Data consisted of the audio recordings, transcriptions of the recordings, eld notes, and relevant demographic 254 Journal of Nursing Scholarship, 2014; 46:4, 253–262. C 2014 Sigma Theta Tau International Zu ˜ niga et al. TB Treatment on the U.S.–Mexico data. Data analysis was guided by Cohen, Kahn, and Steeves (2000). Field notes were written immediately af- ter each interview and included a description of the in- terview setting, the subject’s body language, preliminary thematic labels, and bracketed ideas. A professional tran- scriptionist and translator transcribed and translated the audio recordings shortly after the interview. Spanish lan- guage interviews were transcribed and translated at the same time. At the end of data collection, demographic data were summarized to describe the sample.

A number of steps were taken to assure trustworthi- ness. Written critical re ections were kept throughout to promote researcher self-awareness of possible bias or prejudices, and eld notes created a written log to audit decision making and bracketing (Cohen et al., 2000).

Possible concept labels were noted during the inter- view, and participants were asked to validate them at the end of the interview. Transcripts were read multiple times to enable full immersion in the data. Next we reduced the transcript, deciding what was relevant, reorganized the data to place similar topics together, and removed vo- cal tics. After reduction, line-by-line coding of the revised transcript was completed. Next, we conducted a thematic analysis, guided by Merleau-Ponty’s (1962) concepts of culture, embodiment, equilibrium, and relationships, ex- amining the transcript for important phrases and creat- ing tentative concept labels. Labels generated during the interviews were used at this time. Finally, this arrange- ment was examined to uncover any over-arching themes (Cohen et al., 2000).

Results Participants A total of 18 Mexican American participants (13 men and 5 women) currently receiving DOTS treatment in two counties of the LRGV, Cameron and Hidalgo, were enrolled. Redundancy of ndings was achieved after the 18 participants were interviewed and recruitment was therefore discontinued. Most of the interviews were con- ducted in Spanish ( n= 16) with the assistance of one of two interpreters. The researcher would ask the inter- preter to translate and the participant would answer in Spanish without the need for the questions to be trans- lated into Spanish for them.

Participants’ ages ranged from 22 to 76 years (mean 45, SD 16), a little more than half were unmarried ( n=10), and their years of education ranged from 0 to 14 (mean 8, SD 4). Eleven participants reported having no job at the time of the interview. Only one participant maintained a job continuously during diagnosis and treatment. All the others had stopped working at some point during DOT, although six had since returned to work. Their jobs in- cluded migrant farm work, food service, truck driving, and landscaping. The average number of people living in the household was four, with nine participants having ve or more people living in their households.

Eight participants had been hospitalized when diag- nosed with TB, with stays ranging from 2 weeks to 2.5 months. Over half of the participants had diabetes. One participant had kidney failure and was on dialysis three times a week; another had acetaminophen-associated cir- rhosis of the liver. Three participants were in treatment for a relapse in TB and were being treated for a second time. Two participants had relatives who died of TB.

Themes Through the data analysis process, ve interrelated themes were identi ed as part of the lived experience of TB treatment. These were (a) being observed taking pills every day; (b) symptoms and side effects; (c) importance of family; (d) stigma; and (e) border living. The themes will be explained below with exemplar quotes from the participants.

Being observed taking pills every day. The day- to-day experience of DOT treatment in uences what par- ticipants are doing and feeling during the day. Most par- ticipants did not go to work because they were too sick, had not been cleared to return to work, or had lost their job due to the illness. Their major daily task was taking their TB medication either by going to the clinic to get it or waiting for the nurse to bring it to their home. They limited most other activities outside the home to prevent exposing others in the community to TB.

Participants’ daily routine changed during DOTS to in- clude a round trip to the TB clinic for receiving their daily dose of medications and for symptom management. It was a repetitive cycle of traveling to the clinic, obtaining their pills, taking the medication with a nurse, and re- turning home; this would take about 1.5 hr a day. At the beginning of treatment, going to the clinic was many par- ticipants’ only outing for the day. Most were not work- ing or completing daily errands such as grocery shopping.

Some said they felt bad, and others stated they did not mind going to the clinic every day.

The majority of participants took their medications from a nurse at the clinic closest to their homes. A small percentage of patients were brought medication by a nurse to their homes (personal communication, G. Sali- nas, RN, August 6, 2012). Those allowed to take the med- ication at home typically indicated a hardship attached to traveling to the clinic. Reported hardships that resulted in home visits by the DOTS nurse included lack of or Journal of Nursing Scholarship, 2014; 46:4, 253–262. 255 C 2014 Sigma Theta Tau International TB Treatment on the U.S.–Mexico Zu ˜ niga et al. unreliable transportation, not having funds to take the daily trip by bus, and having a 45-min walk each way to the clinic.

During a typical appointment day, the participant would go to the clinic for a exibly scheduled appoint- ment to receive medication and undergo a basic assess- ment, including vital signs and auscultation of heart and lungs. Only doses given Monday through Friday were ob- served by a nurse and were under DOT; on the weekends the medication was self-administered. On Fridays, pa- tients were given their pills for self-administration on Sat- urday and Sunday. Clinics were only open during busi- ness hours; some clinics had limited hours (e.g., open only in the mornings and closed early on Fridays). DOTS participation is mandatory, and if patients consistently missed their appointments or failed to comply with out- patient treatment, patients would be placed in compul- sory inpatient treatment. If patients missed the hours for that clinic, they would have to drive to another clinic in a different town if they had transportation. Some of the participants were truck drivers and would get their rou- tine dose in the city they were traveling to that day. Ad- ditionally, a nurse would call or visit the patients’ homes if the patient did not show up for an appointment.

Participants talked about taking up to 14 pills a day and getting frequent injections. Some patients did not know what kind of injections they received. Injections included intramuscular administration of Amikacin for those with resistance to the rst line of TB treatment (personal com- munication, G. Salinas, RN, December, 12, 2012.) After they had been on treatment for an extended period of time and their sputum tests were negative, some were al- lowed to decrease the number of nurse visits to twice a week and decrease the number of pills at each dose.

When they started treatment, the participants were not familiar with DOTS treatment and they were surprised to learn they would be observed daily. Most participants stated they were not too concerned with the every-day trip to the clinic but still found the schedule frustrating.

They did not think they needed direct observation.

The nurse told me they didn’t want to give them [the pills] to me because they were afraid I won’t take them, and I told them “Why wouldn’t I take them if it’s for my own bene t? I’ll take them until the last day you tell me treatment was completed.” (Participant 8) As I said, I was depressed. If I have tuberculosis I have to go every day and I do not like to go out that much; I do not like the sun. So I said, “[expletive], what am I going to do?” (Participant 15, translated from Spanish) Some participants said it was no problem to take the pills. Many expressed pride that they were able to swal- low all the pills at once, some without water. One partic- ipant talked of being praised by the nurse at being able to take her pills so well. Other participants who were slower at taking their pills because of the large number and size of the pills, talked about being rushed and pressured by the nurses to go faster.

On the weekends, . . . it was very cool because I took my time, . . . and there was no pressure because there was nobody there hurrying me ...; and they were always on top of time, you have to take them. They are there.... That’s why I told them to leave them with me, and I would take them alone because I felt the pressure from the nurse watching me. (Participant 2) After taking their pills, participants returned to isola- tion at home. Most were not working or had not been given clearance to return to work so they did not con- tinue their normal routine of going to work or caring for their family. They talked about being depressed and sad after coming home with nothing to do. Several spoke of not only isolating themselves in the homes, but also con- ning themselves in the bedrooms.

Symptoms and side effects. Patients with TB ex- perience two phases of symptoms and side effects: those prior to treatment and those during treatment. Cough- ing is a major pretreatment symptom of TB; it is of- ten prolonged and severe. One participant had a cough with bloody sputum for 2 years. Additional symptoms in- cluded weight loss, night sweats, fatigue, agitation, or ill humor.

Even with the fan I sweated a lot, I got the sheets wet; and the cold. With this sun I wore a jacket or sweater and trembling, the symptoms were very bad. At that moment that you feel cold and all that, you feel bad.

When you’re losing appetite, cold, cold sweating at night. I told them how I felt, the cough that didn’t let me sleep. Those are the symptoms I had. (Participant 9, translated from Spanish) Only one participant did not report symptoms of TB; he was found to be positive for TB after his son was di- agnosed and other members of the family were subse- quently tested.

Weight loss was seen as a very negative side effect of TB. Several participants talked about being skinny and how horrible they looked. Five participants reported weight loss, some lost up to 40 pounds, and how much they had gained weight back since receiving treatment.

One participant got tested for human immunode ciency virus because his major symptom was weight loss, not 256 Journal of Nursing Scholarship, 2014; 46:4, 253–262. C 2014 Sigma Theta Tau International Zu ˜ niga et al. TB Treatment on the U.S.–Mexico a cough. Weight loss seemed to be the most distressing symptom to this participant.

The rst time I lost weight. I didn’t have symptoms; the way it was noted is because I lose weight, not because I had cough or the usual symptoms. I lose weight . . . cough, you perspire at night, sometimes phlegm with blood. This second time I’ve not had phlegm with blood and they say I should and I don’t.

The food makes you sick; you lose weight again. This time I didn’t lose weight as the rst time. (Participant 5, translated from Spanish) The symptoms changed relatively quickly for the par- ticipants after treatment began. The side effects of the medication could be as severe or more severe than the symptoms of TB for many participants. In some cases the side effect of nausea was so dif cult for the participant that the doctor offered intravenous medication in inpa- tient treatment, although none of the participants took this option.

I felt that that wasn’t a very good treatment for me because I felt that it started affecting parts of my body.

I felt nauseous.... I started feeling the fatigue. My nger started to feel really stiff. The bone ache, the tiredness.... I blame the pill treatment. It was all happening because of that because I was ne when I was released [from the hospital]. After that treatment I started feeling all those symptoms. (Participant 2, translated from Spanish) In summary, participants reported experiencing symp- toms pretreatment and side effects during treatment. The symptoms and side effects were different, but both were extremely negative and shaped their perspective of TB by affecting their physical and mental feelings.

Importance of family (familismo). All partici- pants spoke, often with visible emotion, of the impor- tance of their families to their TB diagnosis, treatment, and process of living with TB; this concept, familismo (Marin & Marin, 1991), is related to every other theme identi ed in this study. In general, those who told their families about the treatment found support and accep- tance. Those who did not tell their families about their diagnosis and treatment missed out on this familial sup- port and acceptance.

One participant talked about being closer with his im- mediate family since the diagnosis and treatment. In this case, the family of four went through the experience to- gether and apart from their larger society. His mother used to live with them, but his sister took their mother to live with her for the duration of the treatment. The participant’s extended family kept their distance because of their fear of TB so the participant and his immediate family were not able to spend social time with this group as they had in the past.

Two participants moved from Mexico to Texas to re- ceive treatment for TB in the United States. They both stated that they wanted to be closer to family members who wanted to take better care of them while they were going through TB treatment. Once they were living on the same side of the border, the participants could get treatment in the United States and bene t from being supported by their families.

My son and my daughter-in-law accompanied me, and my mother as well.... They never rejected me....

[M]y son who lives here told me to come here to be treated, because I was alone in Mexico so I decided to come here. (Participant 10, translated from Spanish) Family was the key source of support for participants who told their families of the TB status, helping them get to appointments and doctor visits and keeping them motivated.

In the treatment for tuberculosis, . . . they did make a difference. Not my friends, but my family present here.... And they have been a really good su pport because they have helped me to do my best, take my pills, nish the treatment because otherwise, you know, if you want a relapse and it will be harder.

(Participant 2, translated from Spanish) Five participants chose to keep their TB status a secret for a number of different reasons: they did not want to be a burden; they were ashamed; or they were protecting their family members from the stigma of TB. One partic- ipant’s father had recently died from TB, and her mother had kept it a secret. She kept her TB status a secret:

At home they know that I’m taking medication for my lungs, I haven’t told them. No, I don’t dare. I’m afraid. [My mother] will be worried, because although I’m under treatment, she only knows that I’m taking medication for my lungs but she doesn’t know why.

(Participant 7, translated from Spanish) Participants spoke of trying to protect their families, not wanting to be discriminated against by their family, and not wanting to spread the disease to their family:

I will never tell them. I haven’t told my brothers. I told them I didn’t want them to come and visit me. My sister’s son used to come here and stay in a room back there, . . . but I told him I didn’t want him to stay here any longer. My sons . . . were disappointed because I Journal of Nursing Scholarship, 2014; 46:4, 253–262. 257 C 2014 Sigma Theta Tau International TB Treatment on the U.S.–Mexico Zu ˜ niga et al. told him not to come, but I would never tell them the disease I had. (Participant 18, translated from Spanish) Stigma. Stigma is an undesirable attribute that would cause a person to be socially rejected or tainted (Goffman, 1963). As noted, some participants did not let their family visit or contact them because of the fear of stigma. The resulting isolation plays a key role in the experience of stigma from TB. There are four subconcepts that make up the theme of stigma: masks, interaction with others, internalization of stigma, and actions to limit stigma.

When they are still contagious, patients are required to wear a mask when they leave their house, unless they are in an open-air environment, in order to prevent the spread of TB. Participants did not like wearing masks for two reasons: physical discomfort and stigma.

I didn’t like it but I had to wear it.... I felt like I couldn’t breathe. I felt that everybody looked at me sort of saying, oh, she’s infected, she’s going to infect me. That’s why I tried not to go out. (Participant 7, translated from Spanish) Yeah, they knew from the mask of course but well, we didn’t tell a lot of people; just our relatives who were around. We didn’t went [sic] to restaurants . . . dances or stuff like that . . . [e.g.,] ea markets. You know, just go out to the grocery stores or stuff, whatever we had to, other than that, just stay home, stay home for 3 months until I was released from the mask.

(Participant 3) Participants feared that wearing the mask prevented the participants from keeping their TB status secret; if they wore the mask, people would know they were in- fectious. Most chose to stay at home rather than wear a mask. Even those near treatment’s end felt compelled to wear the mask and isolate themselves in order to prevent infecting others with TB.

Even without the mask, participants spoke of feel- ing stigmatized by family and friends because of their TB. Participants talked about losing friends, their family shunning them, and feeling very depressed. Many knew they were risking their relationships when they told their friends and family about the diagnosis. In some cases their friends would accept the diagnosis and other times they would shun them. Many accepted being shunned and stigmatized, stating that their friends and family were just trying to protect themselves from a disease.

Though many of the participants had never heard of TB prior to being diagnosed, some participants talked about being told as children to stay away from people with TB, not just during the infectious part of the disease but always. This prior understanding of TB made them keep their diagnosis secret and further isolated them from others.

I didn’t want to bother people and make them feel bad. I’d know anyway why they didn’t want to [visit me]. I knew they didn’t look for me and I didn’t want to look for them.... I’ll tell them “It’s ne you didn’t look for me, and I didn’t want to look for you because of my disease” and thank God I’m here. (Participant 10, translated from Spanish) One spoke of how people would not want to take any food and drink from her or anyone in her house. Others talked about being lonely when people decided not to be around them.

A lot of people, they still don’t come around because they think that we’re gonna get sick. They’re afraid to come near because ... it is contagious.... [I]t can be treated, . . . but if you don’t treat it in time, it is pretty contagious. I guess people are kind of right to be cautious.... If I was in there, I wouldn’t wanna go near somebody I know who has something that might kill me.... No. Depending on who asked. Give me a gas mask and I’ll go visit you. (Participant 11) Participants also reported internalizing others’ reac- tions to their disease and beginning to feel depressed and guilty. Many participants also spoke about being a bur- den.

I was treated again for 9 months. I still got one more month to go.... And I feel g ood. The only problem is that sometimes you feel bad . . . when you rst get it . . . the family have to go through all this . . . and it’s bad, it’s real bad.... Because at that time, my daughter was living with me, two grandsons and my wife and . . . I used to feel real bad because of me they were going through that. (Participant 3) Isolation seemed to intensify depression. Many partic- ipants talked about coming home each day from getting their medication, then feeling sad about staying inside the rest of the day.

At the beginning, when they told me I had tuberculosis and it was a very dangerous disease, I was depressed.

Because I thought it was a disease like rabies where you can’t speak with anyone; I felt badly. (Participant 8, translated from Spanish) Reaction to stigma. Reacting to stigma, participants limited their exposure to negative reaction from people by keeping their TB status a secret, extending their isola- tion, and avoiding intimate relationships. 258 Journal of Nursing Scholarship, 2014; 46:4, 253–262. C 2014 Sigma Theta Tau International Zu ˜ niga et al. TB Treatment on the U.S.–Mexico Many participants kept their TB status a secret from people outside their families.

My friends and my relatives knew about, yeah, but like my coworkers, most of them did not know .... [T]hey (friends) see you different, they talk bad about you and they never know it might be them or their family and things can turn around . . . you never know . . .

what might happen tomorrow. One of your kids might get it. (Participant 3) Some participants kept their TB status a secret from their family. When asked why they did not tell their fam- ily many said they were trying to protect their family, they were embarrassed by the diagnosis, or thought their family would reject them if they knew.

I didn’t tell them I had tuberculosis. I have two sisters ... and I never told.... I also have nieces here ...

and didn’t want to share it with them because I didn’t know how they would react; maybe they would . . .

say, “Uncle, don’t come over to my house, you might pass it on my children,” or maybe they would come to investigate because I belong to their family. Do you understand? This is why I didn’t want to tell my family; . . . we decided not to say anything. (Participant 2, translated from Spanish) Isolation runs through every other theme describing the experience of living with TB. Isolation is a required part of preventing disease transmission and a reaction to the public’s perception of the disease. Participants iso- lated themselves so they did not have to feel stigmatized, and others kept their distance; this reinforced the isola- tion. Isolation was also manifested in a lack of intimacy with spouses and partners. Participants isolated them- selves from the general public and their loved ones by not leaving their homes. They discontinued normal out- ings and activities. In some cases, the U.S. border created even more isolation because they would choose not to cross the border any more.

Even though isolation is a required part of the TB treat- ment to reduce further spread of the disease, participants extended this isolation by staying home rather than wear a mask and increasing their time in isolation. Some spent the entire duration of treatment isolated from other peo- ple; this is not the instruction given to them by the clinic staff.

Over my dead body I was going to wear a mask....

I haven’t returned [to church], but when I pass by the church I make the sign of the cross.... What I do is when I get home I turn on the TV because they are transmitting a mass. I miss that. (Participant 18, translated from Spanish) In order to protect their loved ones from becoming in- fected with TB, participants talked about their lack of in- timate relations since their diagnosis. One participant told us that he was impotent since starting the treatment and he believed it was a side effect of the medication. The nurses at the TB clinic told me that they are very clear that participants may continue sleeping in the same bed as their spouses or partners, because their spouse has al- ready been exposed, but participants told us they slept separately from their spouses and signi cant others.

I was dating a girl and had not seen her for a while....

I explained to her that I was ill, but I was afraid to be rejected. She said it was ne, she would wait.

And I was in doubt if it is right or wrong to have a relationship the way things are right now. That is what I was afraid of because she wanted to hug me and kiss me and I said, “Just wait until I get well” and she said, “I will wait for you.” So I don’t know if I can have a relationship. I was afraid.... In the mean time, no.

(Participant 16, translated from Spanish) Living close to the U.S.–Mexico border in uenced par- ticipants’ perspectives and heightened their isolation.

Some of the participants talked about being vulnerable to TB because of the proximity to Mexico, where rates of TB are higher. One man thought he might have gotten TB from the street vendors who blow open bags before plac- ing fries or other snacks in them. Another man knew he had gotten TB from his son’s girlfriend who lived in Mata- moros, Mexico. The girlfriend had not received treatment at the time of the interview and he stated she was very sick and might not survive. Every member of the partic- ipant’s family had tested positive for TB and two of his sons had been hospitalized.

There’s a lot of people that come over from Mexico, here in the border towns, and that’s probably what makes us susceptible to tuberculosis.... We’re so close to the border. We come into contact with people from Mexico every day. (Participant 11, translated from Spanish) Many crossed the border in both directions to visit fam- ily and friends or to receive treatment. After their TB was diagnosed, several stopped crossing the border either to prevent the spread of TB or because they felt they were discriminated against by the border patrol for wearing a mask during a border crossing.

The rst time you feel weird, because you’re with your family and they ask you what’s wrong with you and you have to tell them because that’s very contagious.

They think you’re going to transmit it to them and you feel weird . . . on one occasion I had to go to Journal of Nursing Scholarship, 2014; 46:4, 253–262. 259 C 2014 Sigma Theta Tau International TB Treatment on the U.S.–Mexico Zu ˜ niga et al. Matamoros with the mask and when I was crossing the bridge the man said, “Stay over there.” “I’m not a dog, I don’t have rabies.” He got very angry with me but he separated me from the rest of the people.

(Participant 6, translated from Spanish) Health care was sometimes rst obtained in Mexico and then continued in the United States, perhaps because health care can be less expensive and more accessible in Mexico. The participant may have started the diagnosis process in Mexico because it was cheaper or they lived in Mexico prior to treatment. Two of the participants were brought over to live with their adult children living in the United States in order for the children to take better care of them.

I started with a cough. I couldn’t be talking with someone because I would start coughing. I went to Matamoros and they gave me medication for the cough but it didn’t disappear. So, the doctor ordered some x-rays and there they discovered that I had water in my lung. They removed the water from my lung and I stopped coughing. Then they sent me to the health center.... My son who lives here told me to come here to be treated, because I was alone in Mexico so I decided to come here. (Participant 10, translated from Spanish) The U.S.–Mexico border can increase isolation due to participants’ inability or unwillingness to cross it. Cross- ing the border was a common routine of several of the participants. However, after diagnosis with TB some of the participants were separated from their family mem- bers and friends because they chose not to cross the bor- der any more, either because of stigma they felt when crossing the border with a mask, restrictions to their travel because of the requirement of daily treatment, or to prevent spread of the disease to others. The border be- came an additional barrier limiting access to social sup- port, therefore exacerbating social isolation.

IusedtogotoabarinReynosabecauseitwasclose 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 back home.... But I haven’t gone back . . . yet. (Participant 18, translated from Spanish) Discussion Having TB and receiving TB treatment creates a strug- gle to nd a balance between the patient’s personal needs and the requirements of treatment and also a balance be- tween the best interest of the patient and the best interest of the family and society. Patients weigh their need for family and societal support against the risks of exposing their family to an infectious disease or of feeling stigma- tized. If they stay isolated, they do not have to wear a mask or risk feeling stigmatized. Once they leave home, the mask easily identi es them as a person with an infec- tious disease or as someone who is ill. Although many participants found isolation depressing and lonely, the experience of isolation might outweigh the negative feel- ings that come from being stigmatized. Many participants felt they had to sacri ce their own needs for the good of their family. They isolated themselves even within their homes, and often kept their diagnosis secret from their friends and family, either to save themselves from stigma or to protect those around them from being stigmatized themselves.

They also balanced the bene ts of taking their medica- tion with the negative side effects of the medication. The need to nish treatment had to be balanced against the nausea, fatigue, and weakness. Several of the participants talked of other patients leaving the DOTS program. They had heard about patients leaving for Mexico because they did not want to nish treatment.

During the treatment, each participant had to decide what was best for their family, society, and themselves during their treatment for TB. They knew the wrong choice could continue the spread of the disease and put others in their same situation. In some instances, the bal- ancing act led to depression and extreme isolation. TB and TB treatment carry with them a great burden to the participant and their families. A few of the participants found a balance that worked for them and their family, while others seemed to be still struggling with the best way to cope with the isolation and stigma.

Limitations The study has several limitations. Study ndings are limited to the Mexican Americans who live in the LRGV of the U.S.–Mexico border and may not be generalizable to other settings or cultural groups. Purposive sampling may induce bias because it is not random selection. Some of the participants knew each other or were relatives. This may alter the ndings because of the close relationship with other participants in the study. Those who declined to participate may have a different experience from those who chose to participate.

Implications for Practice The participants in this study spent up to 1.5 hr a day acquiring their medication from the DOT nurse, including 260 Journal of Nursing Scholarship, 2014; 46:4, 253–262. C 2014 Sigma Theta Tau International Zu ˜ niga et al. TB Treatment on the U.S.–Mexico travel and wait time. Even though the nurses and staff members were dedicated and compassionate, some changes to the program might relieve some of the bur- den placed on the patient. If patients can be trusted to take their own medication on the weekends, the patients could be trusted to self-administer more days a week, still checking in with the clinic or public health nurse once a week or less often as the nurse nds the patient is ad- hering to treatment. Self-administered treatment could be monitored electronically with phone calls, text mes- sages, emails, or electronic pill caps that count each time the bottle is opened. Some of these interventions would not work in the LRGV because of the lack of access to phones and computers, but they would be feasible for some patients. However, providing phones with texting ability to TB patients might save direct and indirect costs of treatment by decreasing transportation and staf ng needs.

Family was a main theme in this study. In order to effectively assist patients coping with TB, nurses should counsel and assist patients with disclosure of their TB status to their family and other members of their sup- port system. When possible, nurses should include family members when providing health education about the dis- ease and prevention. Community education programs in neighborhoods with high rates could also help increase social support for patients with TB and potentially assist with case ndings.

Implications for Future Research This study gives rise to additional research questions that can be answered through future qualitative and quantitative research studies. A few of the participants in this study were migrant workers. Their unique barriers and healthcare concerns need to be further investigated.

A future study should focus on migrant workers’ barri- ers to accessing care for TB treatment. Migrant workers, who are temporarily in the United States, might have less social support and fear of being deported than more per- manent residents. The population along the U.S.–Mexico border may have atypical barriers and healthcare needs affected by lowered social status and education levels of LRGV residents, and cultural differences because of their closeness to Mexico and the in ux of immigrants.

Conclusions The participants in TB treatment in the LRGV on the Texas–Mexico border report a high level of stigma during their treatment; therefore, some participants keep their TB status a secret from their family and friends. This is a hardship for these participants because family plays a key role in social support for the participants in this study.

Stigma and isolation due to treatment is connected to the participants’ feelings of depression. The U.S.–Mexico bor- der can be further isolating to the participants with TB by restricting movement that normally occurs in their daily lives.

Acknowledgments We would like to acknowledge and thank Sigma Theta Tau International for research funding through the Doris Bloch Research Grant. This work was carried out with the assistance of Hidalgo and Cameron County TB and lung clinics.

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