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TB-treatment perceptions in Chiapas, Mexico                                                                                  ARTÍCULO ORIGINAL




             Anti-tuberculosis treatment defaulting.
                   An analysis of perceptions
              and interactions in Chiapas, Mexico
                                     Ivett Reyes-Guillén, MSc,(1) Héctor Javier Sánchez-Pérez, PhD,(1,2)
                                        Jorge Cruz-Burguete, PhD,(1) Miren Izaurieta-de Juan, PhD.(3)



                               Reyes-Guillén I, Sánchez-Pérez HJ,                Reyes-Guillén I, Sánchez-Pérez HJ,
                            Cruz-Burguete J, Izaurieta-de Juan M.                Cruz-Burguete J, Izaurieta-de Juan M.
               Anti-tuberculosis treatment defaulting. An analysis               Abandono del tratamiento antituberculosis. Un análisis
               of perceptions and interactions in Chiapas, Mexico.               de percepciones e interacciones en Chiapas, México.
                              Salud Publica Mex 2008;50:251-257.                 Salud Publica Mex 2008;50:251-257.


Abstract                                                                         Resumen
Objective.To analyze the perceptions and interactions of the                     Objetivo. Analizar percepciones e interacciones entre
actors involved in anti-tuberculosis treatment, and to explore                   actores involucrados en el tratamiento antituberculosis y
their influence in treatment defaulting in Los Altos region of                    su influencia en el abandono del tratamiento en los Altos
Chiapas, Mexico. Material and Methods. From November                             de Chiapas, México. Material y métodos. De noviembre
2002 to August 2003, in-depth interviews were administered                       2002 a agosto 2003, se realizaron entrevistas a profundidad
to patients with PTB, patients’ family members, institutional                    a pacientes con TBP, familiares, médicos institucionales, coor-
physicians, community health coordinators, and traditional                       dinadores comunitarios de salud y médicos tradicionales.
medicine practitioners. Results.We found different percep-                       Resultados. Se encontraron diferentes percepciones entre
tions about PTB between patients and their families and                          los pacientes y sus familiares, respecto a las del personal de
among health personnel, as well as communication barriers                        salud, así como barreras de comunicación entre los distintos
between actors. Defaulting is considered to be mainly due to                     actores. Los efectos adversos del tratamiento antituberculosis,
the treatment’s adverse effects. Conclusions. It is necessary                    son consideradas como una de las principales causas de su
to conduct research and interventions in the studied area                        abandono. Conclusiones. Es necesario que en la región es-
with the aim of changing perceptions, improving sensitization,                   tudiada se realicen investigaciones e intervenciones encamina-
quality and suitability of management of patients with PTB in                    das a: cambiar percepciones y mejorar la sensibilidad, calidad
a multicultural context, and promoting collaboration between                     y adecuación del manejo de pacientes con TBP en contextos
institutional and traditional medicine.                                          multiculturales, así como impulsar el trabajo conjunto entre
                                                                                 la medicina institucional y tradicional.

Key words: pulmonary tuberculosis; patient dropouts; percep-                     Palabras clave: tuberculosis pulmonar; desistencia del paciente;
tions; Mexico                                                                    percepciones; México




(1)   El Colegio de la Frontera Sur (Ecosur). México.
(2)   Grupos de Investigación para América y África Latinas. México.
(3)   Asociación Mexicana de Psicoterapia Analítica de Grupo. México.


                                            Received on: July 10, 2007 • Accepted on: December 3, 2007
                    Address reprint requests to: Dr. Héctor Javier Sánchez Pérez. Ecosur. Carretera Panamericana y Periférico Sur, S/N.
                                                   29290 San Cristóbal de Las Casas, Chiapas, México.
                                                               E-mail: hsanchez@ecosur.mx




salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008                                                                                     251
ARTÍCULO ORIGINAL                                                                                   Reyes-Guillén I y col.




T    he Pulmonary Tuberculosis Control Program in
     Chiapas is based on the Directly Observed Therapy
Strategy (DOTS).1 However, diverse organizational as-
                                                               the environment is dimensioned as a function of the
                                                               point of view and character of each individual. In this
                                                               sense, and from the medical-anthropological viewpoint,
pects –notably a shortage of resources, suitably trained       all diseases represent social-historical processes that
personnel and lack of supervision– mean that their             need to be reconstructed in order to understand their
impact is very limited.2 For the patients, even when           current meanings.7-8 Interactions of the actors are the
therapy is free, the high levels of poverty and inacces-       relationships among different social actors involved in
sibility of health services make treatment under the           a particular issue.9-11
DOTS difficult. The result of all of this is low cure rates.2         Even though defaulting from anti-tuberculosis
In 2002, the PTB incidence rate for Mexico was 21.01 per       treatment has been studied in many places and with
100 000 inhabitants, whereas in Chiapas it was 43.2 and,       different approaches, very few studies have tackled
in contrast, only 4.8 in Guanajuato.3                          it from the perspectives of the patient’s family, health
      In terms of mortality associated with PTB, in 2002       services providers, and even the patients themselves –all
the rate for women was 2.3 per 100 000 in Mexico and           of which interact during anti-tuberculosis treatment–.
6.5 in Chiapas, but in the Federal District (Mexico City) it   This situation acquires even greater relevance in contexts
was only 0.7 per 100 000. Among men, the corresponding         where two or more distinct cultures coexist (for example,
rates were 5.4, 12.9 and 1.6 per 100 000, respectively.3       indigenous and non-indigenous), and where there is
      In the Chiapas region of Los Altos, according to         high poverty, in general, being places where PTB has
Ministry of Health records, from 2001 to 2003 the cure         high prevalence.
rate for PTB was 61.7%, while in 4.2% the treatment
failed, 7% defaulted, 7.3% died, 8% were referred, and         Study population and methods
in an additional 11.8% the treatment outcome was
unknown. According to other studies, only 16% of PTB           Los Altos is a region with some of the poorest health
patients are treated via DOTS, in contrast with the of-        conditions in Chiapas and Mexico.12 It has 10 of the
ficial figure for Mexico of 70 percent.4                         50 poorest municipalities in the country and it has the
      In this context, defaulting from anti-tuberculosis       highest proportion of indigenous population. Less than
treatment also constitutes an important barrier to its         20% of its 422 269 inhabitants have any form of social
control,5 an aspect which particularly affects the Los         security12 and the majority have insufficient resources to
Altos Region.4 Although no precise data exists on the          be able to have access to private services. Consequently,
incidence of PTB in Los Altos, in areas of high levels         both public health services and traditional medicine are
of poverty in Chiapas the prevalence of PTB in the             extensively used by the population.2,12
population aged 15 years and over is around 277 per                 Between November 2002 and August 2003, in-
100 000 inhabitants, with under 30% of cases receiving         depth interviews were administered to all the different
anti-tuberculosis treatment and rates of under-diagnosis       actors involved in anti-tuberculosis treatment in the
that range between 34% in the hospital context to over         Los Altos localities with more registered PTB cases.
70% in communities.6                                           These actors are: patients with PTB, patients’ family
      Given that the conception of a disease and the re-       members, institutional medicine physicians, community
sponse to it are influenced by social, cultural, economic       health coordinators (formerly known as “primary care
and political values –which together shape symbolic            technicians”) and traditional medicine practitioners. A
structures and which translate into forms of thinking in       series of guiding, open-ended questions were prepared
accordance with the immediate environment–7 the pres-          for use in the in-depth interviews for each one of these
ent research was carried out with the aim of examining         actors. The interviews were carried out separately and
the perceptions and interactions of the actors involved        in private by the project’s principal investigator, who
in anti-tuberculosis treatment. This research, therefore,      has extensive experience in community work in multi-
included conceptions regarding PTB and its treatment,          cultural environments. Patients and their families were
as well as the identification of perceived treatment-re-        interviewed in their homes, and health workers in their
lated problems which may influence defaulting in Los            workplaces. It was only necessary to employ interpreters
Altos, one of the poorest regions, and one with a high         with two patients; all other interviews were conducted
indigenous population (Mayan Indians) not only in              in Spanish.
Chiapas, but also in the country as a whole.2
      Perceptions are articulator elements for the com-        Patients with PTB. Based on the results of a previous
prehension and analysis of both individual and group           study,13 the communities with the most patients with
actions. Perception is a cognitive process through which       PTB were identified: San Cristóbal de Las Casas (n=17

252                                                                  salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008
TB-treatment perceptions in Chiapas, Mexico                                                                                        ARTÍCULO ORIGINAL



cases), Teopisca (n=3), and San Juan Chamula (n=3). Ac-                                the study–). Of those interviewed, four participated in
cording to Ministry of Health records, 50.3% of patients                               the treatment of the studied patients.
with PTB in Los Altos come from these communities.                                     Practitioners of traditional medicine: Their diagnoses and
All these patients had received anti-tuberculosis treat-                               treatments involve magical-religious aspects. Represen-
ment two to three years before the present study was                                   tatives of traditional medicine practicing in the study
conducted.                                                                             area were interviewed (all of them have treated patients
     Of the 23 patients with PTB sought (18 indigenous;                                with PTB):
six women and 17 men), four had died from PTB
(three indigenous); eight could not be traced (seven                                   •     An herbalist (who uses medicinal plants) from the
indigenous); two indigenous refused, and nine agreed                                         most important organization for traditional medi-
to participate (table I). Those patients who still had a                                     cine practitioners in the region (Chiapas Indigenous
cough were asked to provide samples for culturing and                                        Medicine Organization);
for drug sensitivity, and these were processed according                               •     A spiritualist who deals with “spiritual-” and “soul-”
to current Mexican regulations.14                                                            related problems, basing treatment on prayer, but
Patient family members. Thirteen family members were                                         also prescribing allopathic medicines (for example,
interviewed, who correspond to the nine interviewed                                          vitamins to “fortify the body”);
patients and one who had died due to PTB.                                              •     A practitioner of traditional medicine, the only one
Institutional medicine physicians. All physicians (n=8)                                      in the region whose work is coordinated with insti-
involved in tuberculosis prevention and control in the                                       tutional medicine (the others have no interaction
communities studied were included: program coordina-                                         with institutional medicine as they perceive it as
tors (at state, health district and local levels), treating                                  lacking respect for traditional medicine). Given that
physicians, and zone supervisors. Three of them had                                          she combines herbal with allopathic remedies, she
participated in the treatment of at least one patient, and                                   is considered a “traditional medicine practitioner
only one speaks a native language.                                                           in transition”.15
Community health coordinators. These are community
health technicians who perform epidemiological sur-                                    Ethical aspects
veillance and administer anti-TB treatment via DOTS.
They speak an indigenous language and play a role as                                   At the time of the study, there was no ethical review
liaison between patients and health services. Nine of the                              committee in Chiapas. Furthermore, according to
regional 19 community health coordinators were inter-                                  Mexican health legislation,16 this research is considered
viewed (the rest refused due to “lack of time” –despite                                as a “low health risk” and does not require approval
urging by their immediate superiors to participate in                                  by a research ethical committee. However, all research




                                                                             Table 1
           SOCIODEMOGRAPHIC INDICATORS OF THE NINE PATIENTS STUDIED WITH PTB. CHIAPAS, MÉXICO, 2002-2003
 Age        Marital           Place      Speaks indigenous                                            Work at the moment                       With treatment PTB
(years) Sex status        of residence      language?            Schooling            Occupation         of the study?         Religion         defaulting?   status

 58    M Married          San Cristobal LC    Tsotsil        Completed primary   Unskilled labourer          Yes           Catholic                 No        Cured
                                                             School
 31    M    Married       San Cristobal LC    Tsotsil        University          Primary school teacher      No            Catholic                 No        Cured
 36    M    Married       San Cristobal LC    Tsotsil        High school         Office worker                No            None                     Yes       MDR*
 61    M    Married       San Cristobal LC    Tsotsil        No schooling        Worker                      No            Catholic                 Yes       MDR
 42    M    Married       San Cristobal LC    Tsotsil        Third grade         Merchant                    No            Presbyterian             No        Cured
 80    M    Widowed       Teopisca            Tsotsil        No schooling        Peasant                     No            Jehovah’s Witness        No        Cured
 36    F    Married       San Juan Chamula    Tsotsil        No schooling        Household chores            No            Catholic                 Yes       MDR
 22    M    Single        San Cristobal LC    No             Completed primary   Driver                      No            None                     Yes       MDR
                                                             School
 60    M Married          Teopisca            No             No schooling        Unskilled labourer          No            Catholic                 No        Cured

* Multi-drug-resistance



salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008                                                                                                   253
ARTÍCULO ORIGINAL                                                                                Reyes-Guillén I y col.



was performed in accordance with the Declaration of         the patient takes, and they think that defaulting is due
Helsinki.17                                                 to the secondary effects and long duration of treatment.
                                                            They tend to see traditional medicine as not curing PTB,
Analysis of the information                                 even though there was one case of a man who obliged
                                                            his wife to use only traditional medicine. Their main
The in-depth interviews were analyzed according to          concerns with respect to PTB were seeing their family
Grounded Theory18 by organizing the relationship of         member ill, not being cured by the treatment, feeling
the responses from the various actors in terms of con-      worse when in treatment, and the physicians did not
ceptions regarding PTB and its treatment, as well as by     explain or help. They cited problems of a short supply of
identifying perceived treatment-related problems.           medicines, constant changes of doctors and long waiting
                                                            times for receiving medical care. They consider that even
                           Results                          though institutional physicians treat the patient well,
                                                            they receive insufficient information about PTB and
Of the nine patients interviewed, five completed treat-      inadequate support for dealing with secondary effects,
ment and did not present any respiratory symptoms.          and point out that if the institutional physicians took
The other four had defaulted anti-TB treatment at least     them into account, they could be of greater use (“The
twice (and presented multi-drug-resistance): two due        doctor explains nothing to us” –family member of one
to secondary effects (dizziness, weakness, physical         of the patients–; “… we could help our patient, but they
indisposition); one woman’s husband wouldn’t let her        don’t listen to us”).
take the treatment (“if you take that medicine, you feel          Institutional physicians and community health
bad...you’ll die”); and one due to alcoholism.              coordinators recognize that secondary reactions to the
                                                            therapy are the main causes of defaulting. Physicians
Perceptions about PTB. The patients with PTB perceived it   consider these reactions to be “normal” and that they
as a problem of an ordinary cough. Their main concerns      can only treat gastric problems (“they start complaining
were that treatment didn’t get rid of the cough and it      about stomach pain… but we can’t do anything, the
made them feel worse than the PTB itself –due to its        treatment is like that, we only help out with antacids
adverse effects–; that is, a lack of improvement and        and food supplements” –institutional physician–). Other
feeling weaker. Their worries about PTB were greater        factors mentioned in treatment defaulting were: lack
when physically unable to work (”before I could work        of commitment on the part of patients, negative family
my land, now I can’t…”). Among those resorting to tra-      influence that can hinder treatment, and; negative doc-
ditional medicine, only one case considered it curative;    tor-patient relationships (problems in attitudes, poor
it was common, regardless of ethnicity, that this kind      communication and disinterest on both sides). Among
of medicine is used as a complementary, non-curative        aspects which worry health personnel most about PTB
treatment.                                                  are: treatment defaulting, multi drug-resistance, lack of
      Patients (both defaulting and not) feel poorly        access to health services and the tuberculosis program’s
understood by institutional physicians and that there       low budget.
is a lack of communication (although they mentioned               Furthermore, for institutional physicians, tradi-
being well-treated by health personnel); they feel that     tional medicinal knowledge has no validity for PTB
institutional physicians attach no importance to the        treatment. Similarly, the community health coordina-
malaise that the anti-tuberculosis medication causes.       tors see themselves as superior to traditional medicine
      As a general rule, patients did not believe anti-     practitioners, who they see as rivals; the traditional
tuberculosis treatment could cure them, and that,           practitioners see the community health coordinators as
consequently, they would not be able to continue living     a source of conflict in the communities because of their
a normal life, especially with regard to the treatment’s    contempt of traditional medicine.
adverse effects (“There’s no way I’m going to keep                Traditional medicine practitioners conceptualize
taking this medicine if it makes me feel even worse”).      PTB as a cough resulting from complication of influenza.
Among indigenous patients it was common to hear that        They consider anti-TB treatment defaulting as arising
“God wanted me to get sick like this, and if I have to      from its long duration, secondary reactions and igno-
die, nothing can be done about it”.                         rance on the part of the patient about the disease and
      The information obtained from patients’ families      its treatment. They feel that patients often simply do
coincided fully with that provided by the patients:         not want to be cured, and “when a patient wants to die,
they perceived it as a problem of an ordinary cough. In     nothing can be done about it.” Moreover, they believe
general, they do not know what medication or dosage         that institutional physicians do nothing to make the

254                                                               salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008
TB-treatment perceptions in Chiapas, Mexico                                                      ARTÍCULO ORIGINAL



therapy shorter or to avoid the patient’s suffering. With      •    There is no relationship between institutional and
the exception of the spiritualist who refers his patients to        traditional medicine.
institutional physicians, practitioners consider they can
cure PTB with treatments based on certain specific herbal
remedies that reduce coughing and strengthen the lungs,
                                                                                     Discussion
with treatment lasting from 2 to 6 weeks, depending on         The Tuberculosis Control Program in the studied area is
severity (“we can cure them in a week or so… we can            very poor: among other factors, the situation is unknown
cure more quickly” –traditional herbalist).                    for a high proportion of patients, there is evidence of
                                                               high mortality, high levels of defaulting, multi-drug
Interactions among the actors                                  resistance, and personnel are not well-trained. The fol-
                                                               lowing aspects are particularly notable:
Interactions found among the various actors are complex,
although in some cases there is no interaction at all:         a)   Perceptions regarding PTB are similar between
                                                                    patients and their families, but this view differs
•    Patients are supported by their family. With the               from that of the institutional physicians, and this
     exception of one patient who fainted once from                 may be considered an inter-actor communication
     the medication (and whose husband forbid her to                barrier. One repercussion is that patients and their
     continue), families encourage the patient to adhere            families do not have appropriate information about
     to treatment. There were no data to suggest any                PTB and are not aware of the importance of strict
     discrimination or stigmatization of PTB patients               adherence to their anti-tuberculosis treatment. In
     within the family.                                             this regard, lack of information from health work-
•    Patients mentioned that institutional physicians               ers about PTB is a predictor of non-compliance of
     do not explain what is happening, doctors change               anti-tuberculosis treatment.19
     constantly, and their medication is often not avail-      b)   That institutional physicians don’t give sufficient
     able. Institutional physicians consider that patients          support for dealing with secondary effects and
     complain too much and that the secondary reactions             do not take either patients or their families into
     they experience are largely due to “not eating prop-           account constitutes a barrier to communication. If
     erly.” Similarly, institutional physicians generally           patients and their families are met with disinterest,
     maintain a rather distant doctor-patient relationship,         indifference, and different perceptions and attitudes
     not getting involved in the physical and emotional             on the part of health personnel, it will be difficult
     condition of patients, scolding them to take their             to get them to change behavior patterns regarding
     medication, and never going to their home when                 anti-tuberculosis therapy. Our results underline the
     they are unable to go to the health unit.                      fact that for defaulting, structural barriers are more
•    Patients and their families have a much better re-             important than cultural differences.20 If patients
     lationship (in terms of trust and communication)               with PTB repeatedly interrupt therapy, chronicity
     with traditional medicine practitioners than with              and multi-drug resistance are favored.21 In this
     institutional physicians, since the former will lis-           study, the four patients who had defaulted at least
     ten to the patient, try to help them, and agree that           once were multi-drug resistant.
     institutional therapy is very long and has adverse                   Although it was not possible to document
     effects. In addition, traditional medicine practitio-          cases of over-dosage in treatment, one of the main
     ners take into consideration that the family helps             reasons indicated for defaulting was secondary
     the patient and checks to ensure they take their               effects, considered to be more harmful than PTB
     medication.                                                    itself. In this sense, there was a notable incapacity
•    Patients’ family members noted a lack of communi-              on the part of institutional physicians to manage
     cation with institutional physicians and community             patients. This is important to consider because in
     health coordinators who, in the best of cases, merely          malnourished patients these effects are usually
     hand over the anti-tuberculosis medication to the              amplified22 and Chiapas is the Mexican state with
     patient but provide no further explanations. Nei-              the highest levels of malnutrition.2
     ther the institutional physicians nor the community       c)   Despite the majority of patients being indigenous,
     health coordinators take the family into account,              little use was apparently made of traditional medi-
     not seeing them as a potential factor in providing             cine. Based on our findings, it appears that this type
     support for the anti-tuberculosis treatment.                   of medicine is used for complementary treatment,



salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008                                                          255
ARTÍCULO ORIGINAL                                                                                         Reyes-Guillén I y col.



      or as an alternative in dealing with the secondary      for their invaluable contribution in carrying out the
      effects of anti-tuberculosis treatment. However,        analyses for this research; to Alejandro Flores and Juan
      since the use of traditional medicine is widely         Carlos Nájera Ortiz for their invaluable support in the
      recognized in the region, particularly among the        field work.
      indigenous population, it is also possible that the
      interviewed patients, for cultural reasons, did not
      fully declare their utilization of these services.23
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                                                              Mexico: Porrúa, 2004.
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the Chiapas Institute of Health, and to the Chiapas           la teoría fundamentada a la salud. Cinta de Moebio, Issue 019. Santiago de
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21. Farmer P,Yong Kim J. Community based approaches to the control of        Programa de Investigaciones Multidisciplinarias sobre Mesoamérica y el
multidrug-resistant tuberculosis: introducing “DOT- plus”. BMJ 1998;317:     Sureste. México, DF: Universidad Nacional Autónoma de Mexico, 2002.
671-674.                                                                     24. Geertz C. Los usos de la diversidad. Barcelona: Paidós, 1996.
22. Núñez-Rocha GM, Salinas-Martínez AM,Villareal-Ríos E, Garza-             25. Jaramillo E. Tuberculosis control in less developed countries: can
Elizondo ME, González-Rodríguez F. Riesgo nutricional en pacientes con       culture explain the whole picture? Tropical Doctor 1998;28:196-200.
tuberculosis pulmonar: ¿cuestión del paciente o de los servicios de salud?
Salud Publica Mex 2000;42:126-132.




salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008                                                                                     257
Tuberculosis en chiapas

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Tuberculosis en chiapas

  • 1. TB-treatment perceptions in Chiapas, Mexico ARTÍCULO ORIGINAL Anti-tuberculosis treatment defaulting. An analysis of perceptions and interactions in Chiapas, Mexico Ivett Reyes-Guillén, MSc,(1) Héctor Javier Sánchez-Pérez, PhD,(1,2) Jorge Cruz-Burguete, PhD,(1) Miren Izaurieta-de Juan, PhD.(3) Reyes-Guillén I, Sánchez-Pérez HJ, Reyes-Guillén I, Sánchez-Pérez HJ, Cruz-Burguete J, Izaurieta-de Juan M. Cruz-Burguete J, Izaurieta-de Juan M. Anti-tuberculosis treatment defaulting. An analysis Abandono del tratamiento antituberculosis. Un análisis of perceptions and interactions in Chiapas, Mexico. de percepciones e interacciones en Chiapas, México. Salud Publica Mex 2008;50:251-257. Salud Publica Mex 2008;50:251-257. Abstract Resumen Objective.To analyze the perceptions and interactions of the Objetivo. Analizar percepciones e interacciones entre actors involved in anti-tuberculosis treatment, and to explore actores involucrados en el tratamiento antituberculosis y their influence in treatment defaulting in Los Altos region of su influencia en el abandono del tratamiento en los Altos Chiapas, Mexico. Material and Methods. From November de Chiapas, México. Material y métodos. De noviembre 2002 to August 2003, in-depth interviews were administered 2002 a agosto 2003, se realizaron entrevistas a profundidad to patients with PTB, patients’ family members, institutional a pacientes con TBP, familiares, médicos institucionales, coor- physicians, community health coordinators, and traditional dinadores comunitarios de salud y médicos tradicionales. medicine practitioners. Results.We found different percep- Resultados. Se encontraron diferentes percepciones entre tions about PTB between patients and their families and los pacientes y sus familiares, respecto a las del personal de among health personnel, as well as communication barriers salud, así como barreras de comunicación entre los distintos between actors. Defaulting is considered to be mainly due to actores. Los efectos adversos del tratamiento antituberculosis, the treatment’s adverse effects. Conclusions. It is necessary son consideradas como una de las principales causas de su to conduct research and interventions in the studied area abandono. Conclusiones. Es necesario que en la región es- with the aim of changing perceptions, improving sensitization, tudiada se realicen investigaciones e intervenciones encamina- quality and suitability of management of patients with PTB in das a: cambiar percepciones y mejorar la sensibilidad, calidad a multicultural context, and promoting collaboration between y adecuación del manejo de pacientes con TBP en contextos institutional and traditional medicine. multiculturales, así como impulsar el trabajo conjunto entre la medicina institucional y tradicional. Key words: pulmonary tuberculosis; patient dropouts; percep- Palabras clave: tuberculosis pulmonar; desistencia del paciente; tions; Mexico percepciones; México (1) El Colegio de la Frontera Sur (Ecosur). México. (2) Grupos de Investigación para América y África Latinas. México. (3) Asociación Mexicana de Psicoterapia Analítica de Grupo. México. Received on: July 10, 2007 • Accepted on: December 3, 2007 Address reprint requests to: Dr. Héctor Javier Sánchez Pérez. Ecosur. Carretera Panamericana y Periférico Sur, S/N. 29290 San Cristóbal de Las Casas, Chiapas, México. E-mail: hsanchez@ecosur.mx salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008 251
  • 2. ARTÍCULO ORIGINAL Reyes-Guillén I y col. T he Pulmonary Tuberculosis Control Program in Chiapas is based on the Directly Observed Therapy Strategy (DOTS).1 However, diverse organizational as- the environment is dimensioned as a function of the point of view and character of each individual. In this sense, and from the medical-anthropological viewpoint, pects –notably a shortage of resources, suitably trained all diseases represent social-historical processes that personnel and lack of supervision– mean that their need to be reconstructed in order to understand their impact is very limited.2 For the patients, even when current meanings.7-8 Interactions of the actors are the therapy is free, the high levels of poverty and inacces- relationships among different social actors involved in sibility of health services make treatment under the a particular issue.9-11 DOTS difficult. The result of all of this is low cure rates.2 Even though defaulting from anti-tuberculosis In 2002, the PTB incidence rate for Mexico was 21.01 per treatment has been studied in many places and with 100 000 inhabitants, whereas in Chiapas it was 43.2 and, different approaches, very few studies have tackled in contrast, only 4.8 in Guanajuato.3 it from the perspectives of the patient’s family, health In terms of mortality associated with PTB, in 2002 services providers, and even the patients themselves –all the rate for women was 2.3 per 100 000 in Mexico and of which interact during anti-tuberculosis treatment–. 6.5 in Chiapas, but in the Federal District (Mexico City) it This situation acquires even greater relevance in contexts was only 0.7 per 100 000. Among men, the corresponding where two or more distinct cultures coexist (for example, rates were 5.4, 12.9 and 1.6 per 100 000, respectively.3 indigenous and non-indigenous), and where there is In the Chiapas region of Los Altos, according to high poverty, in general, being places where PTB has Ministry of Health records, from 2001 to 2003 the cure high prevalence. rate for PTB was 61.7%, while in 4.2% the treatment failed, 7% defaulted, 7.3% died, 8% were referred, and Study population and methods in an additional 11.8% the treatment outcome was unknown. According to other studies, only 16% of PTB Los Altos is a region with some of the poorest health patients are treated via DOTS, in contrast with the of- conditions in Chiapas and Mexico.12 It has 10 of the ficial figure for Mexico of 70 percent.4 50 poorest municipalities in the country and it has the In this context, defaulting from anti-tuberculosis highest proportion of indigenous population. Less than treatment also constitutes an important barrier to its 20% of its 422 269 inhabitants have any form of social control,5 an aspect which particularly affects the Los security12 and the majority have insufficient resources to Altos Region.4 Although no precise data exists on the be able to have access to private services. Consequently, incidence of PTB in Los Altos, in areas of high levels both public health services and traditional medicine are of poverty in Chiapas the prevalence of PTB in the extensively used by the population.2,12 population aged 15 years and over is around 277 per Between November 2002 and August 2003, in- 100 000 inhabitants, with under 30% of cases receiving depth interviews were administered to all the different anti-tuberculosis treatment and rates of under-diagnosis actors involved in anti-tuberculosis treatment in the that range between 34% in the hospital context to over Los Altos localities with more registered PTB cases. 70% in communities.6 These actors are: patients with PTB, patients’ family Given that the conception of a disease and the re- members, institutional medicine physicians, community sponse to it are influenced by social, cultural, economic health coordinators (formerly known as “primary care and political values –which together shape symbolic technicians”) and traditional medicine practitioners. A structures and which translate into forms of thinking in series of guiding, open-ended questions were prepared accordance with the immediate environment–7 the pres- for use in the in-depth interviews for each one of these ent research was carried out with the aim of examining actors. The interviews were carried out separately and the perceptions and interactions of the actors involved in private by the project’s principal investigator, who in anti-tuberculosis treatment. This research, therefore, has extensive experience in community work in multi- included conceptions regarding PTB and its treatment, cultural environments. Patients and their families were as well as the identification of perceived treatment-re- interviewed in their homes, and health workers in their lated problems which may influence defaulting in Los workplaces. It was only necessary to employ interpreters Altos, one of the poorest regions, and one with a high with two patients; all other interviews were conducted indigenous population (Mayan Indians) not only in in Spanish. Chiapas, but also in the country as a whole.2 Perceptions are articulator elements for the com- Patients with PTB. Based on the results of a previous prehension and analysis of both individual and group study,13 the communities with the most patients with actions. Perception is a cognitive process through which PTB were identified: San Cristóbal de Las Casas (n=17 252 salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008
  • 3. TB-treatment perceptions in Chiapas, Mexico ARTÍCULO ORIGINAL cases), Teopisca (n=3), and San Juan Chamula (n=3). Ac- the study–). Of those interviewed, four participated in cording to Ministry of Health records, 50.3% of patients the treatment of the studied patients. with PTB in Los Altos come from these communities. Practitioners of traditional medicine: Their diagnoses and All these patients had received anti-tuberculosis treat- treatments involve magical-religious aspects. Represen- ment two to three years before the present study was tatives of traditional medicine practicing in the study conducted. area were interviewed (all of them have treated patients Of the 23 patients with PTB sought (18 indigenous; with PTB): six women and 17 men), four had died from PTB (three indigenous); eight could not be traced (seven • An herbalist (who uses medicinal plants) from the indigenous); two indigenous refused, and nine agreed most important organization for traditional medi- to participate (table I). Those patients who still had a cine practitioners in the region (Chiapas Indigenous cough were asked to provide samples for culturing and Medicine Organization); for drug sensitivity, and these were processed according • A spiritualist who deals with “spiritual-” and “soul-” to current Mexican regulations.14 related problems, basing treatment on prayer, but Patient family members. Thirteen family members were also prescribing allopathic medicines (for example, interviewed, who correspond to the nine interviewed vitamins to “fortify the body”); patients and one who had died due to PTB. • A practitioner of traditional medicine, the only one Institutional medicine physicians. All physicians (n=8) in the region whose work is coordinated with insti- involved in tuberculosis prevention and control in the tutional medicine (the others have no interaction communities studied were included: program coordina- with institutional medicine as they perceive it as tors (at state, health district and local levels), treating lacking respect for traditional medicine). Given that physicians, and zone supervisors. Three of them had she combines herbal with allopathic remedies, she participated in the treatment of at least one patient, and is considered a “traditional medicine practitioner only one speaks a native language. in transition”.15 Community health coordinators. These are community health technicians who perform epidemiological sur- Ethical aspects veillance and administer anti-TB treatment via DOTS. They speak an indigenous language and play a role as At the time of the study, there was no ethical review liaison between patients and health services. Nine of the committee in Chiapas. Furthermore, according to regional 19 community health coordinators were inter- Mexican health legislation,16 this research is considered viewed (the rest refused due to “lack of time” –despite as a “low health risk” and does not require approval urging by their immediate superiors to participate in by a research ethical committee. However, all research Table 1 SOCIODEMOGRAPHIC INDICATORS OF THE NINE PATIENTS STUDIED WITH PTB. CHIAPAS, MÉXICO, 2002-2003 Age Marital Place Speaks indigenous Work at the moment With treatment PTB (years) Sex status of residence language? Schooling Occupation of the study? Religion defaulting? status 58 M Married San Cristobal LC Tsotsil Completed primary Unskilled labourer Yes Catholic No Cured School 31 M Married San Cristobal LC Tsotsil University Primary school teacher No Catholic No Cured 36 M Married San Cristobal LC Tsotsil High school Office worker No None Yes MDR* 61 M Married San Cristobal LC Tsotsil No schooling Worker No Catholic Yes MDR 42 M Married San Cristobal LC Tsotsil Third grade Merchant No Presbyterian No Cured 80 M Widowed Teopisca Tsotsil No schooling Peasant No Jehovah’s Witness No Cured 36 F Married San Juan Chamula Tsotsil No schooling Household chores No Catholic Yes MDR 22 M Single San Cristobal LC No Completed primary Driver No None Yes MDR School 60 M Married Teopisca No No schooling Unskilled labourer No Catholic No Cured * Multi-drug-resistance salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008 253
  • 4. ARTÍCULO ORIGINAL Reyes-Guillén I y col. was performed in accordance with the Declaration of the patient takes, and they think that defaulting is due Helsinki.17 to the secondary effects and long duration of treatment. They tend to see traditional medicine as not curing PTB, Analysis of the information even though there was one case of a man who obliged his wife to use only traditional medicine. Their main The in-depth interviews were analyzed according to concerns with respect to PTB were seeing their family Grounded Theory18 by organizing the relationship of member ill, not being cured by the treatment, feeling the responses from the various actors in terms of con- worse when in treatment, and the physicians did not ceptions regarding PTB and its treatment, as well as by explain or help. They cited problems of a short supply of identifying perceived treatment-related problems. medicines, constant changes of doctors and long waiting times for receiving medical care. They consider that even Results though institutional physicians treat the patient well, they receive insufficient information about PTB and Of the nine patients interviewed, five completed treat- inadequate support for dealing with secondary effects, ment and did not present any respiratory symptoms. and point out that if the institutional physicians took The other four had defaulted anti-TB treatment at least them into account, they could be of greater use (“The twice (and presented multi-drug-resistance): two due doctor explains nothing to us” –family member of one to secondary effects (dizziness, weakness, physical of the patients–; “… we could help our patient, but they indisposition); one woman’s husband wouldn’t let her don’t listen to us”). take the treatment (“if you take that medicine, you feel Institutional physicians and community health bad...you’ll die”); and one due to alcoholism. coordinators recognize that secondary reactions to the therapy are the main causes of defaulting. Physicians Perceptions about PTB. The patients with PTB perceived it consider these reactions to be “normal” and that they as a problem of an ordinary cough. Their main concerns can only treat gastric problems (“they start complaining were that treatment didn’t get rid of the cough and it about stomach pain… but we can’t do anything, the made them feel worse than the PTB itself –due to its treatment is like that, we only help out with antacids adverse effects–; that is, a lack of improvement and and food supplements” –institutional physician–). Other feeling weaker. Their worries about PTB were greater factors mentioned in treatment defaulting were: lack when physically unable to work (”before I could work of commitment on the part of patients, negative family my land, now I can’t…”). Among those resorting to tra- influence that can hinder treatment, and; negative doc- ditional medicine, only one case considered it curative; tor-patient relationships (problems in attitudes, poor it was common, regardless of ethnicity, that this kind communication and disinterest on both sides). Among of medicine is used as a complementary, non-curative aspects which worry health personnel most about PTB treatment. are: treatment defaulting, multi drug-resistance, lack of Patients (both defaulting and not) feel poorly access to health services and the tuberculosis program’s understood by institutional physicians and that there low budget. is a lack of communication (although they mentioned Furthermore, for institutional physicians, tradi- being well-treated by health personnel); they feel that tional medicinal knowledge has no validity for PTB institutional physicians attach no importance to the treatment. Similarly, the community health coordina- malaise that the anti-tuberculosis medication causes. tors see themselves as superior to traditional medicine As a general rule, patients did not believe anti- practitioners, who they see as rivals; the traditional tuberculosis treatment could cure them, and that, practitioners see the community health coordinators as consequently, they would not be able to continue living a source of conflict in the communities because of their a normal life, especially with regard to the treatment’s contempt of traditional medicine. adverse effects (“There’s no way I’m going to keep Traditional medicine practitioners conceptualize taking this medicine if it makes me feel even worse”). PTB as a cough resulting from complication of influenza. Among indigenous patients it was common to hear that They consider anti-TB treatment defaulting as arising “God wanted me to get sick like this, and if I have to from its long duration, secondary reactions and igno- die, nothing can be done about it”. rance on the part of the patient about the disease and The information obtained from patients’ families its treatment. They feel that patients often simply do coincided fully with that provided by the patients: not want to be cured, and “when a patient wants to die, they perceived it as a problem of an ordinary cough. In nothing can be done about it.” Moreover, they believe general, they do not know what medication or dosage that institutional physicians do nothing to make the 254 salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008
  • 5. TB-treatment perceptions in Chiapas, Mexico ARTÍCULO ORIGINAL therapy shorter or to avoid the patient’s suffering. With • There is no relationship between institutional and the exception of the spiritualist who refers his patients to traditional medicine. institutional physicians, practitioners consider they can cure PTB with treatments based on certain specific herbal remedies that reduce coughing and strengthen the lungs, Discussion with treatment lasting from 2 to 6 weeks, depending on The Tuberculosis Control Program in the studied area is severity (“we can cure them in a week or so… we can very poor: among other factors, the situation is unknown cure more quickly” –traditional herbalist). for a high proportion of patients, there is evidence of high mortality, high levels of defaulting, multi-drug Interactions among the actors resistance, and personnel are not well-trained. The fol- lowing aspects are particularly notable: Interactions found among the various actors are complex, although in some cases there is no interaction at all: a) Perceptions regarding PTB are similar between patients and their families, but this view differs • Patients are supported by their family. With the from that of the institutional physicians, and this exception of one patient who fainted once from may be considered an inter-actor communication the medication (and whose husband forbid her to barrier. One repercussion is that patients and their continue), families encourage the patient to adhere families do not have appropriate information about to treatment. There were no data to suggest any PTB and are not aware of the importance of strict discrimination or stigmatization of PTB patients adherence to their anti-tuberculosis treatment. In within the family. this regard, lack of information from health work- • Patients mentioned that institutional physicians ers about PTB is a predictor of non-compliance of do not explain what is happening, doctors change anti-tuberculosis treatment.19 constantly, and their medication is often not avail- b) That institutional physicians don’t give sufficient able. Institutional physicians consider that patients support for dealing with secondary effects and complain too much and that the secondary reactions do not take either patients or their families into they experience are largely due to “not eating prop- account constitutes a barrier to communication. If erly.” Similarly, institutional physicians generally patients and their families are met with disinterest, maintain a rather distant doctor-patient relationship, indifference, and different perceptions and attitudes not getting involved in the physical and emotional on the part of health personnel, it will be difficult condition of patients, scolding them to take their to get them to change behavior patterns regarding medication, and never going to their home when anti-tuberculosis therapy. Our results underline the they are unable to go to the health unit. fact that for defaulting, structural barriers are more • Patients and their families have a much better re- important than cultural differences.20 If patients lationship (in terms of trust and communication) with PTB repeatedly interrupt therapy, chronicity with traditional medicine practitioners than with and multi-drug resistance are favored.21 In this institutional physicians, since the former will lis- study, the four patients who had defaulted at least ten to the patient, try to help them, and agree that once were multi-drug resistant. institutional therapy is very long and has adverse Although it was not possible to document effects. In addition, traditional medicine practitio- cases of over-dosage in treatment, one of the main ners take into consideration that the family helps reasons indicated for defaulting was secondary the patient and checks to ensure they take their effects, considered to be more harmful than PTB medication. itself. In this sense, there was a notable incapacity • Patients’ family members noted a lack of communi- on the part of institutional physicians to manage cation with institutional physicians and community patients. This is important to consider because in health coordinators who, in the best of cases, merely malnourished patients these effects are usually hand over the anti-tuberculosis medication to the amplified22 and Chiapas is the Mexican state with patient but provide no further explanations. Nei- the highest levels of malnutrition.2 ther the institutional physicians nor the community c) Despite the majority of patients being indigenous, health coordinators take the family into account, little use was apparently made of traditional medi- not seeing them as a potential factor in providing cine. Based on our findings, it appears that this type support for the anti-tuberculosis treatment. of medicine is used for complementary treatment, salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008 255
  • 6. ARTÍCULO ORIGINAL Reyes-Guillén I y col. or as an alternative in dealing with the secondary for their invaluable contribution in carrying out the effects of anti-tuberculosis treatment. However, analyses for this research; to Alejandro Flores and Juan since the use of traditional medicine is widely Carlos Nájera Ortiz for their invaluable support in the recognized in the region, particularly among the field work. indigenous population, it is also possible that the interviewed patients, for cultural reasons, did not fully declare their utilization of these services.23 References Similarly, there was a notable lack of any link be- tween institutional and traditional medicine due to the 1. Organización Mundial de la Salud (OMS). Tratamiento de la tuberculosis: directrices para los paradigmas nacionales. Geneva: OMS, 1997. presence of mutual stereotypes. The region studied has 2. Sánchez-Pérez HJ. La salud enferma de Chiapas. En: Ocampo MR, one of the highest percentages of indigenous population Espinoza L. (eds). La Guerra en la Paz. México, DF: Universidad Nacional in Chiapas and traditional medicine comprises part of Autónoma de México/Editorial Comuna/El Colegio de la Frontera Sur, a cultural system which prevails in many sectors –even 2007:287-324. some that are non-indigenous– as well as constitutes 3. Secretaría de Salud (SSA). Indicadores de resultado, 2002. Información para la evaluación de los sistemas de salud. Salud Publica Mex 2004;46: a complex doctrine regarding health and ill-health; a 261-271. historical and cultural legacy.23 The confluence of two or 4. Sánchez-Pérez HJ, Nájera-Ortiz JC. Seguimiento de pacientes con more cultures implies, apart from sharing territory, the tuberculosis pulmonar en los Altos de Chiapas, México: un análisis de coexistence of different rationalities; something which casos de pacientes diagnosticados de 1998 al 2002. In: XXIII Congreso may be seen as rational from one point of view may well Nacional de Investigación Biomédica. Monterrey, Nuevo León: Universidad Autónoma de Nuevo León, 2005. be considered irrational from another.24 5. World Health Organization (WHO). Report on the tuberculosis However, in Los Altos there are no strategies at- epidemia 1997. Geneva: WHO, 1998. tempting to bring these two types of medicine together 6. Sanchez-Perez HJ, Hernan M, Hernandez-Diaz S, Jansa JM, Halperin D, in the control of PTB, to not put patients in a position of Ascherio A. Detection of pulmonary tuberculosis in Chiapas, Mexico. conflict between institutional and traditional medicine Annals of Epidemiology 2002; (12)3:166-172. 7. Menéndez LE. Estilos de vida, riesgos y construcción social. Conceptos (based mainly on herbal remedies, shorter treatment similares y significados diferentes. Estudios Sociológicos 1998;16: 37-67. time, cheaper, and without secondary effects). However, 8. Corona A, Morales C, Chalgub M, Armas P, Acosta C, González E. the inefficiency of the Tuberculosis Control Program Conocimientos, percepciones y prácticas de grupos de población in the studied region cannot be explained by cultural respecto a la tuberculosis 1994-1996. Rev Cubana Med Trop questions. 2000;52(2):110-114 9. Checkland P. Systems thinking, systems practice. New York: John Wiley, Regarding the limitations of the study, the results 1981. obtained may be affected by the inefficiency of the Tu- 10. Hindess B. Actor and Social Relations. In: M.L. Wardell, S. Turner (Eds.). berculosis Control Program in the area: in regions where Sociological Theory in Transition. Boston, Mass: Allen and Unwin, 1986. the programs do operate effectively and are centered 11. Long N, Loog A (Eds.). Battlefields of knowledge. Londres: Rootledge, on the needs of patients, they can counteract mythical 1992. 12. Consejo Nacional de Población. Programa de Educación Salud y beliefs about tuberculosis and reduce defaulting.25 Alimentación (PROGRESA). Índices de marginación por localidad. Mexico, DF: CONAPO-PROGRESA, 1998. Conclusions 13. Sánchez-Pérez HJ. Informe final del Proyecto “Tuberculosis pulmonar en los Altos de Chiapas: ¿avances o retrocesos?” San Cristóbal de Las It is necessary to develop interventions involving health Casas, Chiapas: El Colegio de la Frontera Sur, 2000. personnel in the study area which: modify perceptions; 14. SSA. Modificación a la Norma Oficial Mexicana NOM-006-SSA2-1993 para la prevención y control de la tuberculosis en la atención primaria a improve sensitization, communication, quality and suit- la salud. Mexico, DF: Diario Oficial de la Federación, 24 de septiembre de ability of management of patients with PTB in a mul- 2005. ticultural context; and promote collaboration between 15. Harman R.C. Cambios Médicos y Sociales en una comunidad maya- institutional and traditional medicine. tzeltal. Mexico, DF: Instituto Nacional Indigenista, 1990. 16. Carbonell M. Ley General de Salud y disposiciones complementarias. Mexico: Porrúa, 2004. Acknowledgements 17. World Medical Association. Declaration of Helsinki: ethical principles for medical research involving human subjects. Edinburgh: WMA, 2000. We express our thanks to Los Altos Health District of 18. Jones D, Manzelli H, Pecheny M. Grounded Theory. Una aplicación de the Chiapas Institute of Health, and to the Chiapas la teoría fundamentada a la salud. Cinta de Moebio, Issue 019. Santiago de State Indigenous Medicine Organization (OMIECH) Chile: Universidad de Chile, 2004. 19. Culqui DR, Grijalva CG, Reategui SR, Cajo JM, Suárez LA. Factores for their support of and trust in our work; to Dr. Er- pronósticos del abandono del tratamiento antituberculoso en una región nesto Jaramillo Betancour and Dr. Graciela Freyemuth endémica del Perú. Rev Panam Salud Publica 2005;18(1):14-20. 256 salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008
  • 7. TB-treatment perceptions in Chiapas, Mexico ARTÍCULO ORIGINAL 20. Greene JA. An ethnography of nonadherence: culture, poverty, and 23. Page J. El mandato de los Dioses. Etnomedicina entre los tzotziles tuberculosis in urban Bolivia. Cult Med Psychiatry 2004;28:401-425. de Chamula y Chenalhó, Chiapas. San Cristóbal de Las Casas, Chiapas: 21. Farmer P,Yong Kim J. Community based approaches to the control of Programa de Investigaciones Multidisciplinarias sobre Mesoamérica y el multidrug-resistant tuberculosis: introducing “DOT- plus”. BMJ 1998;317: Sureste. México, DF: Universidad Nacional Autónoma de Mexico, 2002. 671-674. 24. Geertz C. Los usos de la diversidad. Barcelona: Paidós, 1996. 22. Núñez-Rocha GM, Salinas-Martínez AM,Villareal-Ríos E, Garza- 25. Jaramillo E. Tuberculosis control in less developed countries: can Elizondo ME, González-Rodríguez F. Riesgo nutricional en pacientes con culture explain the whole picture? Tropical Doctor 1998;28:196-200. tuberculosis pulmonar: ¿cuestión del paciente o de los servicios de salud? Salud Publica Mex 2000;42:126-132. salud pública de méxico / vol. 50, no. 3, mayo-junio de 2008 257