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“If We Have to Die, We Just Die”: Challenges and Opportunities for Tuberculosis and HIV/AIDS Prevention and Care in Northern Thailand

Identifieur interne : 003505 ( Istex/Corpus ); précédent : 003504; suivant : 003506

“If We Have to Die, We Just Die”: Challenges and Opportunities for Tuberculosis and HIV/AIDS Prevention and Care in Northern Thailand

Auteurs : Jintana Ngamvithayapong-Yanai ; Anna Winkvist ; Sarmwai Luangjina ; Vinod Diwan

Source :

RBID : ISTEX:A139D17CE4727FA444617D2F5BE1AEDCAC8F6348

English descriptors

Abstract

In this study, the authors identify opportunities for and challenges in reducing the risks of tuberculosi (TB) and HIV/AIDS transmission in Thailand. They carried out more than six repeated in-depth interviews with each of 13 participants who have been newly diagnosed with TB, 7 of whom were HIV positive, and their caregivers, until the patient recovered from TB or died. They performed extensive observations during relevant private and public activities and analyzed the data using grounded theory, focusing on behaviors affecting risk of transmission. Out of strong virtue, many caregivers felt a responsibility to care for their ill loved ones, thus putting themselves at risk of transmission. For the older generation, this was unimportant, as they had already completed their life cycle (“let it be”). However, strong human bonds encouraged the patients to complete TB treatment until cured or deceased. The authors discuss strategies to build on appropriate behaviors.

Url:
DOI: 10.1177/1049732305281616

Links to Exploration step

ISTEX:A139D17CE4727FA444617D2F5BE1AEDCAC8F6348

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<meta-value> 10.1177/1049732305281616ARTICLEQUALITATIVE HEALTH RESEARCH / November 2005Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND "If We Have to Die, We Just Die": Challenges and Opportunities for Tuberculosis and HIV/AIDS Prevention and Care in Northern Thailand Jintana Ngamvithayapong-Yanai Anna Winkvist Sarmwai Luangjina Vinod Diwan In this study, the authors identify opportunities for and challenges in reducing the risks of tuberculosis (TB) and HIV/AIDS transmission in Thailand. They carried out more than six repeated in-depth interviews with each of 13 participants who have been newly diagnosed with TB, 7 of whom were HIV positive, and their caregivers, until the patient recovered from TB or died. They performed extensive observations during relevant private and public activ- ities and analyzed the data using grounded theory, focusing on behaviors affecting risk of transmission. Out of strong virtue, many caregivers felt a responsibility to care for their ill loved ones, thus putting themselves at risk of transmission. For the older generation, this was unimportant, as they had already completed their lifecycle ("let it be"). However, strong human bonds encouraged the patients to complete TB treatment until cured or deceased. The authors discuss strategies to build on appropriate behaviors. Keywords: TB/HIV; TB and HIV transmission; social behavior; Thailand The United Nations and the world's leading countries and organizations have set a target to reduce by 2010 the burden of the three priority diseases affecting poverty: human immunodeficiency virus (HIV), tuberculosis (TB), and malaria (World Health Organization [WHO], 2004a). The former two are intertwined: TB is the most frequent opportunistic infection affecting people with HIV/AIDS. Fur- thermore, HIV is the single strongest risk factor for the progression of latent TB to active disease (Rieder, 1998). The increasing number of TB cases among HIV- infected people poses an increased risk of TB transmission to the general commu- nity and to all people regardless of their HIV status (Hopewell, 1993). A considerable amount of qualitative research has been conducted on HIV/ AIDS transmission, prevention, and care, and the psychosocial interaction of the 1164 AUTHORS' NOTE:The study was supported by the Japanese Foundation for AIDS Prevention (JFAP) and the TB/HIV Research Project (a project under RIT-JATA, supported by Ministry of Health, Welfare, and Labor of Japan). We thank Dr. Renu Srismith, director of the study hospital. We also appreciate the patients and their family members for their active participation in the study. QUALITATIVE HEALTH RESEARCH, Vol. 15 No. 9, November 2005 1164-1179 DOI: 10.1177/1049732305281616 © 2005 Sage Publications HIV/AIDS patients, the caregivers, and the social networks. Most of these studies have been conducted in low TB-prevalent countries with special emphasis on cop- ing with loss and death due to HIV/AIDS (Baker, Sudit, Litwak, 1998; Brown & Powell-Cope, 1991; Carlisle, 2000; Hays, Magee, & Chauncey, 1994; Leblanc, Lon- don, & Aneshensel, 1997; Pavalko & Woodbury, 2000; Stajduhar, 1997). Much less is known about these issues in the context of high TB prevalence. In a previous study using focus group discussions (Ngamvithayapong, Winkvist, & Diwan, 2000), we explored people's beliefs and behaviors about TB and HIV/AIDS in Thailand, a country where both diseases are highly prevalent (UNAIDS, 2004; WHO, 2004b). We reported that AIDS stigma might increase the risk of TB transmission because of the delay in seeking care and nonadherence to TB treatment. In this article, we penetrate more deeply the complex interplay between sociocultural factors and the risk of transmission of TB and HIV/AIDS, based on data from a subsequent qualitative study. Here, 13 newly diagnosed TB patients (with and without HIV infection) and their caregivers were followed during 6 to 8 months with more than six repeated in-depth interviews, until TB was cured or the patient died. These interview data are supplemented by extensive findings from observations during relevant private and public activities. The results are impor- tant for public health measures, especially in lower income countries, where infor- mal care represents the major part of health and social services for people living with HIV/AIDS (Leblanc et al., 1997). PARTICIPANTS AND METHODS Between January 1999 and May 2000, we conducted the study, which was approved by the Ethical Research Committees of Thailand's Ministry of Health and Karo- linska Institute, Sweden. We purposively recruited pulmonary TB patients infected with the HIV virus (TB[HIV+]) or without HIV infection (TB[HIV­]) from a hospital in northern Thailand. TB treatment was provided free of charge, but antiretroviral therapy was not available. Recruitment criteria included being 16 to 45 years of age (which is the reproductive age span and most vulnerable to HIV infection); living within three specific districts, allowing the researchers to visit their homes repeat- edly for up to 6 or 8 months;and able to walk to the toilet on one's own. One waitress at a noodle shop refused to participate in this research for fear of losing her job if her TB became known. Thirteen patients were recruited, 6 from the outpatient and 7 from the inpatient departments. Data collection included initial interviews with the TB patients at the hospital on the day of their TB diagnosis using a structured questionnaire. The interviewer (in street clothes) introduced herself as a doctoral student in public health and explained the study to the patients. Written informed consents were obtained before the start of the interviews. All participants were made aware of their right to withdraw from the study at any time and their right to not respond to questions to which they did not wish to respond, as well as the confidentiality of the individual's data and information. Two weeks after the first structured interview, in-depth interviews took place withthepatients and caregivers/spouses at their home.Thereafter, five tosix repeat visits took place during the following 6 to 8 months. In the event that the patient died during this period, family members were interviewed. Each interview was Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND 1165 between 40 and 150 minutes long and was tape-recorded. In total, the investigators conducted 86 home visits with 125 hours of interviews. We carried out observations during the home visits and at the other locations using an observation form, note taking, and photography. In every home visit, the researchers used an observation form for observing and recording the living, sleep- ing, and dining places; foods eaten and eating utensils used; medicine storing (type and amount); coughing and spitting manners; and interactions between the patient, family members, and neighbors. The observations at other locations were con- ducted based on the data obtained from the individual patient. For example, one patient and his family temporarily (10 days) moved to a place where a provincial festival was held to sell food at the festival. In this case, the researchers followed them to the new place and observed the patient's living conditions. Additional social events were observed, such as attending the funeral ceremonies of 5 patients who passed away during the study period. Here, the social interactions between family members and the community people during the funeral ceremonies were observed. Moreover, several patients repeatedly reported that during the night in the hospital, their mother or wife closely cared for them by lying down on the floor under the patients' beds. The researchers verified the information by observing how family members located the patient in the hospital ward during the night. After each data collection activity, the researchers immediately discussed the findings and planned for the next activity, using the concept of emergent design. Trustworthiness of the study was enhanced by prolonged engagement between the researchers and the interviewees, and triangulation in data sources, data collection methods, and investigators. The research team was composed of two Thai (JN and SL, both female) and two Swedish investigators (AW, female; VD, male). Both Thai investigators, who collected all the data, had conducted research on TB and HIV/ AIDS in the area for 5 years. JN, of Bangkok, has nursing and social sciences train- ing. SL is a resident of the province with social sciences training. AW and VD have extensive experience in international health research, including research on gender and TB in Vietnam and sub-Saharan Africa. DATA ANALYSIS The interview texts were transcribed verbatim. Three literate participants verified the transcribed texts and provided feedback. The observation data were extracted from the original observation notes and integrated into the interview text using dif- ferent text colors. Two investigators (JN and SL) performed open coding separately, following the grounded theory tradition (Strauss & Corbin, 1998), and thereafter discussed any discrepancies. The other investigators (AW and VD) verified the open coding for some of the interviews. The open codes were computerized, and lists of codes were obtained. Groups of open codes with similar themes were com- bined into larger categories, and their properties and dimensions were identified. A core category, which was central to the emergent themes and linked to most other categories, was selected. Thereafter, a final model was formulated. In this article, the qualifiers used for expression of approximate proportions of less than 30%, 70 to 80%, and 90% of participants are "some," "the majority," and "most," respectively. 1166 QUALITATIVE HEALTH RESEARCH / November 2005 FINDINGS Most patients were of low socioeconomic status, as indicated by education (mostly primary school only), occupation, and regularity of income. Occupations included laborer, farmer, sex worker, food vendor, and member of the armed forces. Ages ranged between 19 and 44 years, and about half were female. The TB(HIV+) patients generally needed intensive care from their caregivers for a longer time, whereas the majority of the TB(HIV­) patients cared for themselves. Of the 7 TB(HIV+) patients, 2 were cured of their TB, whereas 5 patients died 3 weeks to 7 months after starting their TB treatment. In the TB(HIV­) group, 5 patients were cured of their TB, but 1 patient died as a result of serious drug reactions and a his- tory of alcohol abuse. From the data, seven categories leading to increased or reduced risk of transmission of TB and HIV, as a consequence of adherence or nonadherence to TB and HIV prevention guidelines, were identified (Table 1). A model displaying the associations among these categories was formulated (Figure 1). The following is a description of these categories. Defining Oneself An individual who enters the model (Figure 1) can be classified by health status as well as by family and social status. Most TB(HIV­) patients, after receiving their TB treatment, would resume normal health status and regain their original social role in the family within a few months. In contrast, the majority of TB(HIV+) patients permanently changed their social status in the family and society. For example, because Thai society stigmatizes those infected with AIDS, most HIV infected per- sons in our study lost their employment. Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND 1167 FIGURE 1: Model of Factors Increasing and Reducing Risk of TB and HIV Transmission 1168 TABLE1:CategoriesLeadingtoIncreasedorReducedRiskofTransmissionofTuberculosisandHIV,andTheirOpenCodes,Properties,andDimensions CategoryExamplesofOpenCodesPropertiesandDimensions DefiningOneselfTB(HIV+)patient,TB(HIV­)patient,wife,husband,mother, father,neighbor,unemployed Healthstatus(healthy,sick),socialstatus(unchanged, changed),workstatus(employed,unemployed) RoleandResponsibilityWife'srole,mother'srole,caregiver,duty,responsibilitySource(internalized,norm,law),level(none,low,high),dura- tion(temporary,permanentorlifelong) VirtueCommitment,compassion,considerate,sin,dedicate,egoistic, selfish,empathy,gratitude,honest,cruel,publicmind Value(negative,positive),strength(weak,strong),magnitude (individual,family...community,society) StigmaStigma,lonely,discourage,discrimination,isolation,shame, stress,keepingsecretaboutTB,fear,having"that"disease, couldnotwork,worthless,disgusting Type(perceived,enacted),strength(none,weak,strong), extent(some,every),source(self,family,relatives,general public),duration(temporary,permanentorlifelong) LearningforLifeAIDS...onlydie,heavyAIDS,TBeducation,authority,effec- tivehealtheducation,rumor,distrust,obedienttodoctor, learningforlife,experiences Type(formal,informal),source(self,relative,neighbor,health staff),timing(recent,remote),frequency(occasional, frequent),accuracy(incorrect,correct),magnitude (individual,family,community) HumanBondLove,care,concern,familybond,truelove,humanbond, AIDSfriends,tightfamily,beingalone,sharing,regular visitors Type(byblood,law,norm,choice),duration(short,lifelong), strength(weak,strong),frequency(occasional,frequent) AcceptingFateLetitbe,whateverwillbewillbe,fatalism,expecteddeath, deathsentence,justdied,hopeless,karma Type(age-related,HIV/AIDS),strength(weak,strong), frequency(occasional,frequent),source(self,others), duration(temporary,permanent) Adherent/NonadherenttoTBand HIVPreventionGuidelines Separateeating,isolatedsleeping,keepingdistance,openness aboutTB,coveringmouth,closecontact,strictmedication adherence,coughingwithoutcoveringmouth,spittingin generalplaces,denyingwearingmaskorgloves,remarry- ing,beingcommercialsexworker,delayinseekingcare, crowded Intent(intentional,unintentional),frequency(occasional, constant),degree(none,strict),duration(temporary, lifelong),level(individual,household,community,society), outcome(benefittohealth,harmtohealth,irrelevantto health) NOTE:TB(HIV+)referstoHIV-positivepatientswhohavetuberculosis;aTB(HIV­)patienthastuberculosisbutisHIVnegative. Defining Oneself was linked with most other categories, especially with Role and Responsibility, Stigma, Human Bond, and Accepting Fate. For example, being a mother or wife of a patient (family status: close) meant assuming the role and responsibility of a caregiver. Furthermore, AIDS-related stigma was lower or non- existent among family members (family status: close), meaning that everyone in the home accepted foods cooked by the HIV-infected persons without repulsive feel- ings, compared to among the community. Also, HIV-infected persons (health sta- tus: HIV+) tended to accept fate more easily, because they were facing unavoidable death due to AIDS. Role and Responsibility The category Role and Responsibility was most closely linked with the category Defining Oneself, and this could be because of bloodline (e.g., mother and child), social norms (e.g., neighbors), or law (e.g., husband and wife). Here, being a mother or wife of the patient meant accepting the role and responsibility of being a care- giver and putting oneself at risk of TB. Being a neighbor in mostrural settings meant taking on the role of visiting patients in their homes. The roles could be temporary or permanent, and the level of responsibility could be zero or minimal to high (see Table 1). Role and Responsibility could change over time in response to Defining Oneself in combination with Virtue. The majority of the caregivers were mothers or wives. Most mothers shared a strong virtue of being good mothers, and in our study, mothers took permanent responsibility for the care of the single, divorced, and widowed male and female patients. However, wives could respond differently to their husbands' ill health, depending on the strength and value of Virtue. After knowing the HIV status of their husbands, some women terminated their role, and thus their responsibility, as wives by leaving their husbands. Several wives, how- ever, continued their role and took primary responsibility as caregiver. These women felt strongly that wives should be loyal to their husbands. Consequently, some HIV-infected women developed active TB resulting from the role of caregiver for their TB(HIV+) husbands. Virtue The category Virtue in this study means behaviors, opinions, and feelings associ- ated with high moral standards and goodness in Thai society. The category con- notes both positive and negative attitudes and actions of the individual. The indi- vidual's virtue could encompass other family members, the community, or society (see Table 1). Negative and weak virtue was associated with an increased risk of HIV/AIDS transmission. Our study shows that premarital blood tests were uncom- mon among these men and women. Widows left behind by HIV-positive men remarried without informing their new partners of their HIV status. Some HIV- infected women became the family's breadwinners after their husbands died from AIDS; they left the village and went to Bangkok or other countries to earn income as sex workers. However, some participants, although impoverished, felt that it was unethical to further themselves financially by transmitting HIV to others. This Vir- tue not only benefited them and their families but was also seen as benefiting society. Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND 1169 No . . . never! I will not allow my daughter to seek money [become a sex worker]. We should not think only of money. Most men will die soon after getting the infection [HIV]. Men die before women die. Can you imagine? . . . many men have died and their womenremain.If there is a war, ournation will be in trouble. Who will fight for the country? (Mother of a TB[HIV+] patient who was cured of TB) Positive and strong virtue was associated with a strong Human Bond and a high level of responsibility, and mainly associated with a low risk of HIV transmis- sion. However, it could also be associated with a high risk of TB exposure due to the high commitment between patients and caregivers. When my husband developed AIDS symptoms, my mom asked me to abandon him. Mom did not like him and did not want me to bear the burden. It is not an easy feeling.How can I be happy?Yes,if I escape fromhimto marryawealthyman,I may become rich and have a better life. But, mentally, a sin will occur in my mind. No, I will never leave him. Even if a million baht [U.S.$25,000] were given to me in order to separate from him, I would not leave him. I can not leave him. Umm . . . How can I explain? It is anobligation ...it is love. (Young,asymptomatic HIV-infected woman, caregiver of a TB[HIV+] man) Stigma Two types of stigma were observed: enacted and felt. Enacted stigma refers to actual discrimination or unacceptability, whereas felt stigma refers to the fear of such dis- crimination (Scambler, 1998). Causes, actions, and consequences of these types of stigma differed. TB(HIV+) patients experienced enacted stigma from the commu- nity throughout their life due to AIDS but not because of TB. In contrast, most TB(HIV­) patients experienced only felt stigma during a short period. The commu- nity labeled most TB(HIV­) patients as having AIDS, and the stigma usually less- ened after a few months of effective TB treatment, when most of the symptoms dis- appeared. For the TB(HIV+) patients, the enacted AIDS stigma greatly affected the patient and the family psychosocially as well as economically. Common expres- sions of the AIDS stigma included keeping a distance from the patient, refusing foods cooked or sold by the patient, and prohibiting the patient from participating in social gatherings. As mentioned earlier, the type and strength of stigma were closely linked with the type and strength of the categories Defining Oneself and Human Bond: We observed no AIDS-enacted stigma among family members and relatives, because they had close relationships with the patients. In the funeral service, several small groups of people were sitting on the floor. I put myself in one group where four other women were sitting. When there was an announcement that a food set would be delivered to each group, everybody in my group except my relative immediately disappeared from the group. Only my rela- tive and I remained eating together. Nobody wants to share the same food set with people having this disease [AIDS]. (TB[HIV+] woman) Learning for Life The patients, families, and communities have learned how to deal with TB and HIV/AIDS from many sources, for example, based on our experience, relatives, neighbors, health staff, the mass media, as well as from researchers during our 1170 QUALITATIVE HEALTH RESEARCH / November 2005 home visits. Although people were aware of the HIV/AIDS symptoms and the means of transmission, some confusion remained. All TB(HIV­) patients were stig- matized by the community as having HIV/AIDS, because TB symptoms are similar to those of HIV/AIDS (chronic cough, weight loss, dark skin). Formal instruction from health staff was associated with several behaviors that reduced the risk of TB transmission. Most patients reported that they previously coughed openly and dis- posed of the sputum in general areas. However, after receiving TB education from the health staff, many now adhered strictly to the staff's recommendations, such as proper coughing, disposing of the sputum correctly, and adhering to TB treatments. Nevertheless, some TB education provided by health staff was misinterpreted or impractical and did notlead to any change of behaviors. For example, some patients could not avoid sleeping together with their spouse, because they could not afford an extra bed net and blanket. However, they tried their own methods, such as sleep- ing in a back-to-back position to avoid direct breathing or placing a pillow between them. Two female patients reported that their husbands did not accept sleeping sep- arately. Their husbands did not believe that TB was transmissible, as they were still healthy, even though they had been close to their wives, who had been coughing for more than a year. Moreover, the bedrooms of some patients were poorly ventilated, as they kept windows and doors closed for fear that thieves or animals could enter the room. Human Bond The human relationships could be by blood, roles, or choice; however, the strongest and longest lasting was by blood. The Human Bond was one reason why surround- ing people offered care. The number of persons involved in emotional support and care for each patient ranged from none to 50. Magnitude, frequency, and duration of support and care were determined by the disease severity (usually associated with HIV) and the level of love and concern expressed by the family and the community. The majority of the patients received financial and psychosocial support as well as care from the family and the community. The level of love and concern between the caregivers and the patients was associated with the risk of exposure to TB and HIV (nonadherent to TB and HIV prevention guidelines) and intention to reduce the risk of TBtransmission (adherenttoTBand HIV preventionguidelines). Approximately half of the patients studied were taken care of by their mothers. Most of these pro- vided care and stayed close to the patients continuously. However, some patients did not allow their mothers to be close to them for fear of disease transmission. Love and concern about transmission of TB to their mothers or other caregivers highly motivated patient adherence to TB treatment. Most patients intentionally took anti- TB medicine, even until the last day of their life. I love my mom and dad. When I got this disease [AIDS], I felt so bad that I made trouble to my beloved parents. The doctor said if I take TB medicine, I will not spread TB. Therefore, I must take the medicine. I must prevent my parents from get- ting TB from me. (TB[HIV+] female patient) All TB patients (regardless of HIV status) avoided close contact with their young children by isolating their sleeping room and refraining from hugging and playing with their children. However, we consistently observed family members Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND 1171 gathering at the patients' homes and remaining near the patients, especially during the week after their discharge from the hospital and when the illness was consid- ered fatal. Neighbors also customarily gathered at the patients' homes. During these visits, the neighbors shared food, money, and medicine with the patients. Some close neighbors even slept and ate at the patients' homes. Finally, Human Bond could also emerge via HIV status. The HIV-infected per- sons often visited each other, especially during severe illness. They shared medi- cine, health information, and feelings of having the same dreadful disease. Accepting Fate The category Accepting Fate involved mainly the TB(HIV+) patients and families. This category was associated with the categories Defining Oneself, Role and Responsibility, Human Bond, Stigma, and Learning for Life. Accepting fate could increase the risk of TB transmission. Patients, caregivers, and members of the com- munity often expressed "let it be" and "whatever will be will be" (in northern Thai, chang-mon-teh and pen-ngai-pen-gun, respectively) to reflect their fatalism or accep- tance of fate for different reasons. Likely, the visible evidence of incurable and fatal AIDS in the community facilitated the development of fatalism, thus reducing their demands for health services. It was clear for the patients that their destination was death. My relatives said, "Going to the hospital does not help, you will not be cured. Don't go.If youcan live . . . youjust live. If youcan not live, just prepare for the next birth in the next world. Whatever will be will be. Let it be." Many of my siblings and rela- tives [seven] have died of AIDS. I am the only remaining person. My cousin died despite spending huge money for hospital care. His parents sold their car for the treatment but finally he died anyway. I accept not going to the hospital. Just die . . . just die. (TB[HIV+] male patient) Accepting Fate also included the fatalism that was common among the older caregivers (over 50 years), who deeply loved the patients and were concerned with the care. The older caregivers defined the simple steps of the life cycle as getting married, having children, raising the children, and having the children marry. It is acceptable if persons of their age die, as they had already completed their life cycle. Consequently, the fatalistic caregivers were not afraid of being exposed to TB or AIDS. Most of them reported that health staff instructed them to keep a distance from the patients. Nevertheless, they ignored the instructions, as they wanted to provide the best terminal care for their loved ones. They did not mind becoming infected with or dying from TB. At the hospital, nurses told me to sleep outside the patient's room. When the nurses left the room, I just lay down on the floor under my daughter's bed. I was worried, she was terribly sick. When she went to the toilet, nobody helped her. Who would help her? Well . . . whatever will be will be. I accept that I may get TB. Let it be. She is our child. Wherever she is, she is our child. We are already old, not so many years remain that we will live. If we have to die, we just die. (53-year-old mother of a female TB[HIV+] patient) 1172 QUALITATIVE HEALTH RESEARCH / November 2005 Adherent and Nonadherent We chose the category Adherent and Nonadherent to TB and HIV Prevention Guidelines as the central category in the study, as it appeared frequently in the data and was related to most other categories. Adherent and Nonadherent captures intentional and unintentional behaviors of the patients, caregivers, family mem- bers, and communitymembersthat relate to TB and HIV transmission (Table 2). The most commonly perceived adherent behaviors for preventing TB and HIV trans- mission (from people's perspectives) was associated with food behaviors and eat- ing habits. These included isolation of eating, eating utensils (e.g., AIDS cup), and dishwashing sets, as well as restriction from some food items, (e.g. beef, catfish, egg, preserved foods) or supplementing the diet with special foods or drinks (e.g., milk, nutritional tonic, boiled water). The duration and the degree of Adherent and Nonadherent behaviors were determined partly by HIV status and its stigma. For example, the strict, adherent behaviors of TB(HIV­) patients were temporary, whereas the TB(HIV+) patients applied the cautious behaviors indefinitely. The TB(HIV+) patients would never join meals in social gatherings for fear that others would disapprove. Adherent behaviors of the TB(HIV­) patients, such as avoid- ance of sexual intercourse or eating and sleeping in isolation, were limited mainly to the first 2 weeks or until the coughing symptom disappeared. Still, despite good intentions to promote health, sometimes the outcomes of the behaviors could be harmful or might be irrelevant for health. I close all windows of mybedroom because I am afraid that the TB germs will be dis- persed from my room to my parents' room. I am afraid that my parents will be infected with TB. (Female TB[HIV+] patient after an observation by the researcher that the windows were closed) Finally, the HIV-related nonadherent behaviors, such as remarrying without informing their partner about HIV status or entering the sex industry despite HIV- positive status, were closely linked with lack of Virtue. The TB-related nonadherent behavior, such as the delay in seeking TB care, was associated with AIDS stigma. Below, we discuss strategies to build on the appropriate adherent behaviors. DISCUSSION Using qualitative research methods,we have provided in this study perspectiveson what it means to be living with TB bothwith and withoutHIV and how the behavior of the patients, spouses, family, and community members might increase or reduce the risks of TB transmission. Information from different groups of study par- ticipants, investigated with different qualitative methods, confirms results from previous studies. TB(HIV+) patients suffered symptoms that were more seri- ous, and they had more difficulties adhering to TB treatment (Ngamvithayapong, Winkvist, et al., 2000; Ngamvithayapong, Yanai, Winkvist, & Diwan, 2001; Ngamvithayapong, Yanai, Winkvist, Saisorn, & Diwan, 2001). High awareness and high stigma of AIDS caused delay in seeking TB service. All TB(HIV­) patients eval- uated were stigmatized as having AIDS (Ngamvithayapong, Winkvist, et al., 2000). Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND 1173 1174 TABLE2:AdherenceandNonadherencetoTuberculosisandHIVTransmission,Prevention,andCare BehaviorAdherentNonadherent EatingEatingisolation,isolationofeatinganddrinkingutensils,sepa- ratewashingofeatingutensils,restrictionofsomefooditems, eating/drinkingspecialfoods Sharingthesamespoonandsamecupwithseveralpeople, avoidingeatingeggsandsomefruitsandvegetables SleepingChangeofsleepingplace,sleepingisolation,changeinsleeping manner(backtoback,avoidingfacetoface),closingdoorsand windows Sleepinginalimitedspacesharedbyotherfamilymembers, sharingblankets,closingbedroomdoorandwindows SexHavinglessfrequentsex,usingcondoms,refusingremarriageHavingmanyextramaritalloveaffairs,remarryingwithout informingpartnerofHIVstatus,enteringcommercialsex industrydespiteHIV-positivestatus SocialOpennessabouttuberculosis(TB),prohibitingotherpeoplefrom gettingclose,limitingparticipationinpartiesandsocialgather- ings,prohibitingHIV-infectedpeoplefrompreparingorjoin- ingbanquets VisitingofTB(HIV+)friendsbyAIDSfriends,visitingneighbors andstayingforlongperiodswithTBpatientsinlimitedspace, spendinglonghourstravelinginair-conditionednightbuses HealthserviceuseTestingrepeatedlyforHIV(despitenorisksforHIV), a having HIVbloodtestsonlythroughaprivatelaboratory,havingpre- maritalHIVbloodtests,usingdisposableneedles(careful quack), b takinganti-TBmedicationstrictly Delayingseekingcare,neglectingmedicalcare,treatingchronic coughswithanti-coughmedicinefromadrugstore,nothaving premaritalHIVbloodtesting CoughingandspittingCoveringmouthwhencoughing,spittingintoclosedcontainers, burningsputum Coughingwithoutcoveringmouth,spittingingeneralplaces DrinkingandsmokingRefrainingfromdrinkingalcoholandsmokingSmokingand/ordrinkingheavily,resumingdrinkingandsmok- ing,celebratingtheHIV-negativeresultbyheavydrinking CaregivingbehaviorUsingmasksandgloves,avoidingstayingconstantlycloseto patients Neglectingtousemasksand/orgloves,stayingclosetothe patientatalltimes,sleepingunderthebedsofTB(HIV+) patientsduringhospitalization NOTE:TB(HIV+)referstoHIV-positivepatientswhohavetuberculosis. a.ThisiscommonbehaviorinhighHIV-prevalentsettings,wherecommunitymembersstigmatizeTBpatientswhoareHIVnegativeashavingHIV/AIDS(becausesymp- tomsofTBaresimilartothoseofAIDS,i.e.,weightloss,fever,cough).AIDSstigmaforcedHIV-negativepersonstotestrepeatedlyforHIVdespitethepreviousresults' shownegativeresults. b.Aquackisanuntrainedpersonwhoperforms(illegal)medicalpractices.Inourstudy,quacksknewthatHIV/AIDScouldbetransmittedthroughthesharingofneedles andsyringeswithinfectedpersons.Therefore,theyusednewneedlesandsyringeswhileprovidingservicestotheirclients.Forthisreason,weassignedtheopencodingas "carefulquack."Acarelessquackwouldbeonewhoreusessyringesandneedles. What, then, are the new highlights in this study? What are the implications for pol- icy and interventionthatemerged toreduce therisk of TBand HIV transmission? In this study, we developed a behavioral model presenting the core category Adherent and Nonadherent to TB and HIV Prevention Guidelines and three new categories, namely, Accepting Fate, Human Bond, and Virtue. To our knowledge, these categories are not included in the commonly used health behavior theories and models developed by Western scientists, such as the health belief model, the social cognitive theory, or the theory of reasoned action (Glanz, Lewis, & Rimer, 1997). Accepting Fate in this study carried twoconnotations.First, AcceptingFate was a way in which patients and caregivers cope with psychosocial distress due to HIV/ AIDS; they accepted their fate (karma) of having AIDS or taking care of AIDS patients (Pornsiripong, 1998; Sangchart, 1998; Songwathana & Manderson, 1998). Second, Accepting Fate is closely linked with the fatalism of two groups of people, the elderly caregivers and the HIV-infected persons. Fatalism in older caregivers was associated with a cultural norm, whereas the HIV-related fatalism was induced by persistent and abundant evidence of AIDS deaths in the community (Brown & Powell-Cope, 1991; Stajduhar, 1997). AIDS fatalism increased the risk of TB trans- mission due to a delay in seeking TB service and nonadherence to TB treatment. Although the risk of HIV transmission to caregivers through a single accident or membrane exposure are low (0.3%, 0.1%, respectively), caring for the terminally ill with medical complication poses a threat to the health of the caregivers, and there- fore, gloves and masks should be used (Valenti, 1995). Increasing access to anti- retroviral therapy among people with AIDS in Thailand might reduce AIDS-related fatalism, as other studies have shown that such treatment significantly decreases mortality rates and increases survival times (Marins et al., 2003). The psychosocial impact of antiretroviral therapy on AIDS-related fatalism and AIDS stigma among community people should be studied. Human Bond might increase, as well as decrease, community exposure to TB. It is a social norm and a common practice for most villagers to visit patients at home regularly to express their love and concern for their neighbors. For the patients, vis- its from friends and neighbors were a good means of psychological support (Hays et al., 1994). However, the gathering of visitors (including HIV-positive visitors) in poorly ventilated conditions for many days might increase the risk of TB transmis- sion (Blumberg, 2000; Comstock & Cauthen, 1993; Crofton, Home, & Miller, 1992; Klovdahl et al., 2001). The risk of TB transmission is especially high for HIV/AIDS patients who visit someone with undiagnosed TB. Concurrently, Human Bond could reduce community exposure to TB. Although several TB(HIV+) patients were not motivated to treat TB because of a feeling of hopelessness (Ngamvithayapong, Winkvist, et al., 2000), adherence to the TB treatment among these patients could be promoted through awareness building around the TB treatment. Patients should recognize that the best way to prevent TB transmission to others is to adhere to anti-TB medicine. The number of TB bacilli is significantly reduced within 2 weeks of beginning the treatment (Hopewell, 1986). Because of such awareness, mostTB(HIV+) patients adhered strictly tothis TBtreat- ment (until the last day of life), not for their own health but out of concern about transmitting TB to their loved ones. Effective health education also encourages patients to cough and discharge sputum correctly. Patients who care for their family would adhere to any medical advice that could prevent TB transmission. Ngamvithayapong-Yanai et al. / HIV IN NORTHERN THAILAND 1175 The Virtue of the HIV-infected individuals and their family was associated with HIV transmission. Our data suggested that Buddhism inspires positive virtue, which was associated with reducing HIV transmission. The HIV-positive persons with strong Buddhist backgrounds were less likely to transmit HIV further. Al- though some studies suggested that a substantial proportion of HIV-seropositive adults reduce their HIV transmission behavior after learning their serostatus (Wight et al., 2000), our study showed that some HIV-infected persons remarried without informing their new partners. Some women even became sex workers after their AIDS-infected husbands died. One might argue that the HIV-infected sex workers in Thailand have a low risk of HIV transmission because of the successful 100% condom program (Celentano et al., 1998; Rojanapithayakorn & Hanenberg, 1996). Yet, recent studies reported that condom use among sex workers was far below the goals established by Thailand's 100% condom program, and sex workers might continue to be at high risk for HIV infection (Jenkins et al., 2002; Kilmarx, Limpakarnjanarat, et al., 1998; Kilmarx, Palanuvej, et al., 1999; Lertpiriyasuwat, Plipat, & Jenkins, 2003; van Griensven, Limanonda, Ngaokeow, Ayuthaya, & Poshyachinda, 1998). Why, then, do people who know about their HIV infection continue transmitting HIV? People with HIV infection might ignore the illness and try to forget about HIV as a mechanism of controlling their lives (Weitz, 1989). Poverty and unemployment sometimes force HIV widows to become sex workers (Kanwanich, 2000; Kilmarx, Limpakarnjanarat, et al., 1998). Nevertheless, our informants (who were truly impoverished themselves) referred to such behavior as the result of "lack of virtue." They argued that transmitting HIV to others was a seri- ous sin in Buddhism, equivalent to murder. Although groups of Buddhist monks in Thailand play a humanitarian role in caring for the AIDS patients (unwanted by the family) in the temples, their role in HIV prevention could be used much more. Increasing what our participants referred to as virtue by emphasizing one of the five Buddhist precepts, which forbids sexual relationships outside of marriage, might help HIV prevention programs (Assavanonda, 2001; Kanwanich, 2000). In countries affected by the HIV/AIDS epidemic, it is believed, women have a particularly high risk for both HIV and TB. Women are usually responsible for car- ing for ill household members and for replacing them in labor (Hudelson, 1999). In Thailand, most AIDS caregivers are female family members. Male AIDS pa- tients usually become sick before their wives do and are therefore taken care of by their female spouses or their mothers (Knodel, VanLandingham, Saengtienchai, & Im-em, 2001; Manopaiboon et al., 1998; Unahalekhaka, Subpaiboongid, & Lueang- a-papong, 1999). Our data suggested that women were more vulnerable to becom- ing infected with TB because wives and mothers took care of TB patients during day and night, both at home and at the hospital. Close and lengthy contact with TB patients induces a high risk of contracting TB, especially for HIV-infected care- givers. Future research should include participatory action research to minimize TB exposure among HIV-positive caregivers who are unable to compromise their social role and responsibility to be good wives or good mothers. This study suggests various opportunitiesto reduce the risk of TB transmission. 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<title>“If We Have to Die, We Just Die”: Challenges and Opportunities for Tuberculosis and HIV/AIDS Prevention and Care in Northern Thailand</title>
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<title>“If We Have to Die, We Just Die”: Challenges and Opportunities for Tuberculosis and HIV/AIDS Prevention and Care in Northern Thailand</title>
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<name type="personal">
<namePart type="given">Jintana</namePart>
<namePart type="family">Ngamvithayapong-Yanai</namePart>
<affiliation>Research fellow at the Research Institute of Tuberculosis (RIT), Japan Anti-TB Association (JATA), Tokyo, Japan, and the TB/HIV Research Foundation, Chiang Rai, Thailand</affiliation>
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<name type="personal">
<namePart type="given">Anna</namePart>
<namePart type="family">Winkvist</namePart>
<affiliation>Sahlgrenska Academy, Göteborg University, Göteborg, Sweden</affiliation>
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<name type="personal">
<namePart type="given">Sarmwai</namePart>
<namePart type="family">Luangjina</namePart>
<affiliation>TB/HIV Research Foundation, Chiang Rai, Thailand</affiliation>
</name>
<name type="personal">
<namePart type="given">Vinod</namePart>
<namePart type="family">Diwan</namePart>
<affiliation>Division of International Health, Department of Public Health Sciences, Karolinska Institute, Stockholm, Sweden</affiliation>
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<abstract lang="en">In this study, the authors identify opportunities for and challenges in reducing the risks of tuberculosi (TB) and HIV/AIDS transmission in Thailand. They carried out more than six repeated in-depth interviews with each of 13 participants who have been newly diagnosed with TB, 7 of whom were HIV positive, and their caregivers, until the patient recovered from TB or died. They performed extensive observations during relevant private and public activities and analyzed the data using grounded theory, focusing on behaviors affecting risk of transmission. Out of strong virtue, many caregivers felt a responsibility to care for their ill loved ones, thus putting themselves at risk of transmission. For the older generation, this was unimportant, as they had already completed their life cycle (“let it be”). However, strong human bonds encouraged the patients to complete TB treatment until cured or deceased. The authors discuss strategies to build on appropriate behaviors.</abstract>
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<genre>keywords</genre>
<topic>TB/HIV</topic>
<topic>TB and HIV transmission</topic>
<topic>social behavior</topic>
<topic>Thailand</topic>
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<identifier type="ISSN">1049-7323</identifier>
<identifier type="eISSN">1552-7557</identifier>
<identifier type="PublisherID">QHR</identifier>
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<part>
<date>2005</date>
<detail type="volume">
<caption>vol.</caption>
<number>15</number>
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<caption>no.</caption>
<number>9</number>
</detail>
<extent unit="pages">
<start>1164</start>
<end>1179</end>
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