From a biomedical model perspective, disease management tends to be limited to efforts to correct abnormalities in the structure and/or function of any part, organ or system of the body. Illness, on the other hand, is a much broader concept that refers to the subjective response of the patient to being unwell; how he, and those around him, perceive the origin and significance of this event; how it effects his behavior or relationships with other people; and the steps he takes to remedy this situation” (Helman 1981:548). Several authors (Ware & Kleinman 1992; Kleinman 1995) contend that all illnesses have a social course in that interpretation of symptoms, help-seeking, diagnosis, and choice of treatment are all significantly influenced by economic, cultural and psychosocial factors acting in tandem with biological processes.

Green (2002) argues that modern medicine faces a number of crucial and conflicting challenges. Green contends that tremendous surge in medical technology has driven the medical system even further toward a ‘disease-based’ approach to medical care that views individuals as cases and undervalues psychological and socio-cultural aspects of patient care. Scholars argue that in order to implement culturally sensitive health education programmes and policies medical practitioners should supplement theoretical ideas with knowledge about the patients’ subjective experiences dealing with illness and symptoms. The experience and interpretation of symptoms cannot be considered in isolation from the cultural context in which it occurs. Cultural perceptions and beliefs play a significant role in understanding and interpretation of symptoms.

According to Kleinman (1980) patients have different view of the illness, its origin, its severity, its symptoms, and its treatment than that held by the modern biomedical practitioners. Understanding patients’ subjective perceptions and experiences living with illness is very crucial for the delivery of better medical care. Prevention and education programs that ignore lay illness perceptions and experiences are unlikely to be effective. Exploring patients’ subjective experience of symptoms is particularly relevant in the case of TB, where patients and physicians have divergent perceptions, concerns and goals.

Background to Study:

Despite the tremendous advancements made in the field of medical sciences over past few decades, it is disheartening to note that infectious diseases remain the leading cause of morbidity and mortality, and continue to be major public health problems across the globe. A number of age old infectious diseases such as cholera, malaria and TB once considered to be under decline or control, have emerged as serious public health threats worldwide, and are once again threatening the lives of millions of people in resource poor countries (WHO 1998). Even in the 21^st century, TB continues to rank among the world’s most profound public health problem despite being a curable and treatable disease. The goal of control of TB with efficacious drugs continues to be elusive. From a global perspective, the political, social, psychological, economic, medical and public health burden of TB is enormous and incalculable (Ilongo 2004). Even today, people in different parts of the world have a universal fear of TB. The impact of TB is felt in all sectors of society in terms of lost productivity, lost income, emotional distress, fear, social isolation, stigma and social discrimination. TB creates thousands of orphans worldwide each year (Long et al 1999), and pushes many vulnerable and marginalized families into vicious cycle of poverty. The stark reality is that TB is the leading cause of death among the young and adult population from a single infectious pathogen (Mohan & Sharma 2001), and kills more women, than all the causes of maternal mortality. In 2009, conservative estimates suggest there were 9.4 million active TB cases worldwide, and more than 3 million deaths. Of all the estimated 9-10 million new TB cases occurring annually on a global scale, approximately 81% of total new TB cases occur in 22 developing countries, defined as high TB burden countries (HBCs). The stark reality is that India ranks first among the list of 22 high TB burden countries in the world (WHO 2010). Despite the introduction of TB control programs since 1962 in India, TB still remains a leading killer of economically and reproductively active adults. The number of TB cases continued to increase in proportion to the growth of the population in India. Factors such as deterioration in living conditions, population explosion, overcrowding, environmental degradation, substandard sanitary measures, inadequate public health services, spread of HIV/AIDS and Multi-Drug Resistant TB (MDR-TB) may further worsen the situation of TB in the country. TB continues to pose serious challenges to clinicians, public health professionals and health policy makers in India. In India, it strikes millions of people each year exacting a toll higher than many tropical diseases put together. Each year 2 million people develop active TB and over 0.5 million die of this disease in the country. More than 75% of the total TB cases in India are in the age group of 15-54 years, the economically most productive section of the society. The situation of TB in the country is likely to worsen further as a result of emergence and spread of HIV/AIDS epidemic and MDR-TB. In the state of Andhra Pradesh (A.P.), TB poses a very significant public health burden. More than 100,000 new tuberculosis cases occur in A.P., annually. TB constitutes an important cause of morbidity and mortality among poor people, and causes enormous social, economic, and psychological burden in the district of Nalgonda, A.P. Over 4000 new TB cases occur every year, and it is one of the districts with the highest TB burden in A.P. (TB India 2007).

From the perspective of the biomedical model, if the TB patient is treated regularly for the required period of time, the TB germs are controlled and the patient will recover effectively; uninterrupted and standard treatment for TB is all that is required. Why then, has TB, a curable and treatable disease, become so resistant to eradication and control on a global scale? Why, in fact, are the numbers of new TB cases more importantly multi-drug resistant TB cases, rising dramatically worldwide? Scholars acknowledged that delays in seeking treatment (Cambanis et al 2005), non-adherence to anti-TB treatment, drug resistant TB, and stigma (Sumartoja 1993), are the most serious barriers to the control and elimination of TB in large number of developing countries, India is no exception. Patient delay (i.e., the time between onset of symptoms to first consultation with qualified medical practitioners) constitutes one of the important barriers to successful control of TB. Delays in seeking care for TB may not only be detrimental to the individual patient, but also to the community. This is because, a single untreated smear-positive TB patient may infect 15 other individuals in a year (Wandwalo & Morkve 2000). Delays in diagnosis of TB worsen the disease condition in affected individuals and increase their risk of death (Cambanis et al 2005).

Statement of the Research Problem:

The WHO recommended Directly Observed Therapy Shortcourse (DOTS) was introduced in India in 1993 as Revised National Tuberculosis Control Programme (RNTCP). RNTCP programme emphasizes TB cure strictly in bacteriological terms. There is no effort made to understand the influence of socio-cultural factors in causing patient delay. However, early diagnosis and prompt initiation of treatment are prerequisites for successful implementation of TB control programmes. Despite heightened global and national efforts to achieve case detection and treatment targets for TB control, delays in effective diagnosis and treatment initiation still persist which is a serious cause of concern for public health planners in India and other developing countries. The median patient delay varies from 21 to 120 days in developing countries (Cheng et al 2005). Longer delays (especially in case of smear-positive TB cases), may exacerbate the disease among symptomatic individuals, increase their risk of morbidity and mortality from TB, and enhance the risk of transmission in the community (Long et al 1999). Patient delays in TB diagnosis and initiation of treatment among women are a major concern. For example, Long et al (1999:388) argue that “delays among women may have more adverse effects, as the health and welfare of children and other family members is closely linked to that of the mothers”.

Review of literature on patient delays suggest that most studies (Lawn et al 1998, Rajeswari et al 2002, Wandwalo and Morkve 2000) were focused on influence of socio-demographic factors on delay in TB diagnosis and initiation of treatment. Investigators have found that factors such as age, gender, education, poverty and access to health care play an important role in patient delay. However, Dracup (1997: 259) argues that “such research can help clinicians identify which patients are more likely to delay coming to the hospital, but it does not provide guidance for patient education and counseling interventions or community education programs to reduce delay”. In contrast, identification of socio-cultural processes used by patients to evaluate and interpret symptoms, and how patients make decisions to seek treatment is vital for TB control. For example, understanding of socio-cultural factors in patient delay may help health care workers and policy makers in providing counseling to the patients as well as to their families about the importance of early care. Furthermore, a better knowledge of socio-cultural factors influencing delay is vital for planning community education programs in order to reduce patient delays.

Significance of the Study:

An awareness of socio-cultural influences on recognizing and interpreting symptoms has several implications for TB control: i) an awareness of influence of socio-cultural factors in causing patient delay enables the physician to personalize his/her approach to patient care, and to motivate, inspire or negotiate with patients more effectively; ii) it is argued that a deeper awareness of the TB patients’ experiences will lead to improved communication between the physicians and patients, and better patient outcomes; iii) knowledge of experiences of patients living with TB helps the health care workers in gaining a deeper understanding of the role of socio-cultural factors that influence an individual’s willingness to seek care, how choices are made about treatment, socio-cultural factors that influence patient delays in seeking appropriate medical care; iv) a careful analysis of the symptom experiences of TB patients will help in the planning of more comprehensive efforts to reduce patient delays in seeking care, and thereby improving the quality of care of patients; and v) the outcome of this study would also enable RNTCP managers in India to plan future public health educational initiatives and public health communication programs for increasing knowledge and awareness of TB among rural populations.

MATERIALS AND METHODS:

This article is based on a research project conducted for award of Ph. Degree, in Centre for Regional Studies, University of Hyderabad, India. The study was conducted in two Tuberculosis Units - Chintapally and Yadagirigutta in Nalgonda district of A.P. South India, covering a population of 4,25,812 and 3,99,206 respectively. The choice of Nalgonda for this study was governed by three main important reasons: i) the district is characterized by low levels of development (both economic and social) , poor health facilities, a high TB disease burden and a large rural population, ii) the District TB officer and TB supervisors expressed their willingness to participate in the study, iii) since the investigator was interested in the application of social science research to the improvement of health of rural people, it was felt that the chosen study areas should have typical rural features with low development. Yadagirigutta and Chintapally TB units satisfied this criterion.

The field work for this study was conducted during 2008-2009. This study focused only on rural TB patients. As the aim of the study was to highlight subjective experiences of patients, a qualitative method was chosen for this study. The research objectives were also explained to the study participants in simple terms, and given the fact many of the patients were illiterate, oral informed consent was obtained from them before administering the research instruments. Semi-structured interview schedule was used for the collection of data, and in-depth interviews were conducted face-to-face with the patients. The patients’ semi-structured interview schedule was largely guided by Kleinman’s explanatory models of illness, and the semi-structured interview schedule was designed to elicit data on the meaning of their TB illness. Patients’ semi-structured interview schedule included these questions: What do you think has caused your TB disease? How did you feel after you found out the diagnosis? What is the very first thing you did when you got concerned about your symptoms? What are the different treatments sought to get relief? What are the reasons for delay in seeking professional health care? How has the TB illness influenced your social and home life? Each interview session lasted from one to two hours. Patients were given freedom and flexibility to express their experiences with TB illness.

Field notes were taken extensively. Qualitative data was recorded immediately by filling up interview schedule. Whenever necessary, extra visits were paid to the patients, either to get more information or to check the validity of the information obtained. Interviews with the patients were conducted in native language (Telugu). The primary source of data was field interviews. The data collection methods include face-to-face interviews, case studies, participant observation and focus group discussions (FGDs). Handwritten field notes were translated from Telugu to English. Field notes were analyzed inductively, and data was analyzed based on the general principles of grounded theory (Glasser and Strauss (1967). A qualitative content analysis method was employed to analyze and interpret the data. Data analysis was carried out following multi-step procedure that consisted of data reduction, coding and identification of dominant themes. The study is enriched by actual quotes from participants wherever needed. Most quotes may not be verbatim, rather they are a close approximation of what was stated during the interview sessions and captured in the field notes.

RESULTS & DISCUSSION:

A sample of 110 (age range 18-72) newly registered TB patients were selected from a list of patients registered for treatment between December 2008 to May 2009, in Chintapally and Yadagirigutta TB units. TB data with regard to patient’s age, gender, TB type (i.e., pulmonary and extra-pulmonary TB), and HIV status was extracted from TB treatment registers. Socio-demographic characteristics of patients are summarized in Table 1. The results of this study clearly demonstrate that delay is a serious problem among rural TB patients. Study findings showed that about 68% of patients waited one month or more before seeking biomedical care. In the case of TB, a disease that is highly infectious, delays in seeking appropriate treatment means that the likelihood of infecting other people increases. Participants of this study explained that a number of factors contributed to delay in seeking treatment for early symptoms. Some of these factors were: failure to recognize the significance of the initial symptoms, ‘wait and see’ approach, traditional disease causation beliefs, incorrect interpretation of symptoms, attribution of symptoms to less serious illnesses, self medication, negative family history for TB, alcoholism, smoking, low perceived susceptibility to TB, no interference with daily activities, economic and time constraints, herbal treatment, and absence of typical/classic TB symptoms.

Patients explained multiple factors as a cause of their delay, and these factors are discussed in detail below:

Alcohol and Smoking related problem:

The psychological characteristics of alcoholic patients seemed to influence patient delay in availing health services. Male respondents who had a history of high alcohol consumption and smoking interpreted early symptoms (such as cough, loss of appetite, breathlessness), as alcohol and smoking related problems as opposed to being associated with TB.

Table 1. Socio-demographic characteristics of the patients (n=110)

Number of patients %

Age in Groups

18-25 14 12.7

26-35 22 20

36-45 26 23.6

46-55 28 25.4

56-65 16 14.5

66-72 4 3.6

Sex

Male 81 73.6

Female 29 26.3

Marital Status

Married 92 83.6

Widow/Widower 10 9

Single 08 7.3

Education

Non-literate 67 61

Primary 26 23.6

Secondary 14 12.7

College 03 2.7

Occupation

Agriculture 38 34.5

Labor 33 30

Self-employed 24 21.8

Private employee 06 5.4

Student 02 1.8

Others 07 6.4

Annual income

10,000-20,000 15 13.6

21,000-30,000 31 28.1

31,000-40,000 33 30.0

41,000-50,000 13 11.8

51,000-60,000 08 7.3

61,000-70,000 06 5.4

>70,000 04 3.6

TB type

Pulmonary 99 90

Extra-pulmonary 11 10

HIV status

Positive 06 5.5

Negative 104 94.5

Source: Fieldwork (2008-2009)

An example of this was presented by a 56-year-old farmer, when asked why he had waited for several months to seek formal health care, he told a story that represents the experience of a majority of respondents with a history of smoking and alcohol consumption. He said:

I first noticed the symptoms of cough roughly 11 months ago. I didn’t take much notice of these symptoms at that time. I just thought it was one of those things that would clear up. I thought symptoms of cough were understandable, because I was an alcoholic and smoker for several years. You know, a lot of smokers and alcoholics experience cough quite frequently. And I just put it (cough) down to smoking and alcohol consumption.

Alcohol consumption appeared to be a chronic problem in this study area, and with the chronicity of alcohol consumption and smoking in the study region, it is possible that the presence of cough, loss of appetite and weakness has become ‘normal’ to alcoholics and smokers. Thus, it can be hypothesized that patients who had a history of alcohol consumption and smoking did not recognize their symptoms as being associated with TB, and hence delayed medical care. This is an important finding which concurs with other studies in different parts of the world (Auer et al 2000).

Perceived Susceptibility to TB:

Perhaps one of the important factors that caused delay in seeking appropriate medical care could be attributed to patients’ as well as their family members’ lack of knowledge about susceptibility to TB. In fact, a large number of patients expressed shock and surprise on being told about their diagnosis of TB. The illness narratives of patients in this study indicated that patients did not perceive themselves to be at risk for TB. When asked “Did you ever think that you could be at risk for TB disease? More than 90% of the study participants said “No”. Delays in the decision to seek medical treatment occurred frequently because patients did not perceive themselves to be at risk for TB. There was a widespread belief among the study participants and community members that having TB in the family greatly increases their vulnerability to TB. Such perceptions among the patients caused considerable delay in seeking medical care. A 49 year-old, male patient’s narrative suggests clearly how even the early TB symptoms can be misinterpreted if the individual does not view himself at risk of TB disease. He said:

I never suspected that I can have TB for two important reasons. One, no one in my family ever suffered from TB in the past. Second, I didn’t cough up blood/sputum, and I didn’t develop skinny body. Hence, I didn’t think that I was at risk of TB. You know, coughing up blood/sputum and skinny body are the important symptoms of TB.

A 43-year-old patient said:

If TB was present in the family, it was believed that family members would get it, and conversely, if it wasn’t in the family, one wouldn’t get it.

Herbal Treatment:

Several patients attributed their initial symptoms to a folk illness called Pasakalu/Pasirikalu. Pasakalu/Pasirikalu is a local name for jaundice. Of the 110 patients interviewed, 38% of patients consulted traditional herbalists prior to the diagnosis of their TB disease. Attribution of initial symptoms of TB to Pasakalu caused considerable patient delay. According to their cultural belief system, an individual develops pasakalu/pasirikalu if he/she consumes meat while suffering from illness. The symptoms of this folk illness include weight loss, weakness, intermittent fever, yellow or pale eyes, yellow color urine and pale skin. The treatment for pasakalu/pasirikalu is considered to be exclusively the domain of the traditional herbalist, and people stated that there is no biomedical remedy for it. As one 36-year-old, wife of a patient explained:

When my husband developed symptoms of pasakalu, I took him to the traditional herbal healer as the traditional herbal healer is the only source of treatment for this condition. I didn’t take him to a biomedical practitioner because there is no biomedical cure for it.

Patients, community members and traditional herbal healers explained that delay in seeking herbal treatment for pasakalu worsens the disease condition, and may result in death. Because of this reason, patients who attributed their symptoms to Pasakalu illness turned to traditional healers for treatment. It was noted that some patients had consulted more than one herbalist for treatment prior to the diagnosis of their TB. Herbal healers were against the use of any form of western medicine while under treatment for pasakalu. Treatment usually lasts for one month. Consequently, disease condition in patients who sought treatment from herbalists worsened, and this resulted in a considerable delay in receiving professional treatment. Studies conducted on socio-cultural beliefs and perceptions of TB in different parts of the world have found that people attributed symptoms suggestive of TB to different folk illnesses. For example, a study conducted by Rubel and Garro (1992) among Hispanic communities in America found that many Hispanics attributed initial symptoms of TB to folk illnesses called ‘wasting sickness’ or grippe or susto. In Philippines, Lieban (1976) noted that patients attributed their early respiratory symptoms to a folk illness called piang rather than to TB.

Traditional Disease Causation Beliefs:

An in-depth study was undertaken to explore the health seeking behavior of extra-pulmonary patients with symptoms of lumps. It was found that the patients allowed their painless lumps to progress into advanced stage before seeking medical treatment. The study observations revealed that health care seeking decisions for lumps was influenced by various cultural beliefs and interpretations about the cause and management of lumps. Extra-pulmonary patients with lumps explained that they did not possess knowledge about the significance of the presence of a lump, and they were not aware of the need for prompt medical diagnosis and treatment for painless lumps for various cultural reasons. For instance, 39 year-old woman failed to seek professional advice for lumps for a period of 12 months as she convinced herself that it was just a normal lump caused by heat-cold imbalance in the body. She noticed a lump in the neck region approximately 12 months prior to the interview. However, she mentioned that she had really started to take notice of it within the last six months since it had begun to interfere considerably with her life, forcing her to curtail her daily activities. She explained in the following excerpt that traditional beliefs about causation of lumps contributed to a considerable delay in seeking help.

Interviewer:

How long did you wait between finding the lump in your neck region and going to a qualified doctor?

Patient :I suppose roughly 12 months.

Interviewer: What did you think that the lump was when you first noticed it?

Patient:

I didn’t take much notice of these symptoms at that time, I just thought that excessive exposure to sun and consumption of hot foods like mangoes could have caused it, you know. So, I didn’t think it was anything serious. My neighbors and friends also told me that I needn’t worry about it. They told me that impurities in the blood clump together in one place in the form of a lump. So I didn’t think much about it.

Interviewer:

What finally made you to consult a specialist?

Patient :

You know, I had applied herbal extracts, allopathic ointments and bandages on the lump, but it did not disappear. But, then it began to increase in size. In addition to this lump, several smaller lumps also emerged in the neck region. Pain was unbearable. I could not perform normal daily activities because of pain and severe headache. On the advice of friends and neighbors I had consulted a specialist doctor. He told me that I had TB (extra-pulmonary).

Economic and Time Constraints:

Economic and time constraints are also cited as reasons for delay in seeking care. For some respondents the disease was something which had to be actively resisted and fought back against. Resisting the illness does not involve pretending that there is no illness. Several patients said that they cannot afford to submit to the illness for different reasons including economic reasons. For instance, a 38-year-old, lorry driver, said:

For majority of poor people, meeting the demands of daily existence are very important that little time is left to be worried about minor symptoms such as cough, cold or intermittent fever. Taking time off for consultation with doctor means lost work and income. You know, I can’t afford to take time off for trivial problems because my whole family is dependent on me. You see, truth is that I will not have money if I stop working. Without money, how can I support my family? I have no choice but continue working in spite of persistence of symptoms. You know, this is the fact of life for many poor people.

Because of family and financial pressures, people continue to go to work unless symptoms are debilitating and interfering with daily activities. In this study woman patients explained that the demands of household work, caretaking of children and other role responsibilities caused them to postpone seeing a qualified doctor until the symptoms were severe.

Absence of Typical TB Symptoms:

There is a universal belief among the study participants that TB devours its victims badly. It begins inside and then slowly eats the body muscles and organs particularly rib bones. One informant, for example, said “it (TB) eats away the bones and muscles”. The idea that TB eats away the bones and muscles gives an indication as to why people look skinny, and lose much weight when they have the disease. Such beliefs did not encourage patients to seek early treatment. Respondents and community members equated TB with coughing up blood and/or sputum, a skinny body and wasting away. The belief that having TB disease must involve coughing up blood and/or sputum, and having skinny body meant that that the early symptoms of cough, intermittent fever or loss of appetite are considered insignificant. The following quote illustrates how one patient described absence of classical symptoms of TB caused delay in seeking medical assistance:

You know, I get cough and cold every now and then. And I believed that these symptoms would disappear without much intervention. I thought that symptoms were too mild to be TB disease. You know, if I had continuous cough, coughed up blood stained sputum, and lost considerable weight (thin body), then I would have thought that it was TB disease. You see, I didn’t think that I had TB, because my ribs and muscles were in very good condition. You know, the definitive and typical symptoms of TB are: persistent cough, coughing up blood/sputum and thin body and ribs. If we see some of these symptoms in an individual, we can certainly recognize that he/she has TB.

No Interference with Daily Activities:

Many patients believed that they were dealing with a recurring ordinary cough and not TB or any other serious illness. The symptoms of TB are initially similar to other diseases and it is not unusual for patients to consider that the symptoms of cough, weakness or intermittent fever could be simple to treat or resolve. Patients saw their initial symptoms as harmless, and symptoms did not interfere with their daily activities. Such a perception is reasonable for various reasons. For example, people like to think of themselves as normal, and slight deviations from normal body functioning are in themselves quite common. Having ‘cough’ would not usually be viewed by most people as anything other than normal. The frequency with which respiratory infections occurred in the study community influenced health seeking behavior. It was observed that respiratory infections were very common occurrences in the study area, and the frequent occurrence of respiratory infections in the community appeared to prevent patients from interpreting their cough as an early of symptom of TB. However, not until their symptoms became significant and interfered with daily tasks (such as farm work) did the respondents begin to consider that they might have been experiencing some major illness.

A 45-year-old patient, who experienced symptoms of cough, loss of appetite and intermittent fever for 8 months prior to diagnosis, explained how his symptoms interfered with his daily activities and forced to him to consult a qualified health care professional:

I first observed symptoms of cough, loss of appetite, intermittent fever 8 months prior to diagnosis. Initially, I thought these symptoms were trivial, harmless, and do not require medical action. But four months prior to the diagnosis, I felt that my cough wasn’t a normal one, and I believed that there was something really wrong with my health. Symptoms of cough and breathlessness got worse and worse overtime. These symptoms considerably crippled me, and interfered with my daily activities. I became very pale. It was only when my condition deteriorated that I became concerned about my health. First I purchased cough syrup from medical shop and used it for several days but the symptoms didn’t disappear. Later I had consulted a couple of local medical practitioners without much success. Later, I had consulted a chest specialist on the advice of my family members and friends. Sputum and x-ray examinations were carried out at this clinic, and based on the investigations they told me that I had TB.

From the above account it can be concluded that this patient’s condition came to the attention of the formal health care system only when his symptoms began to interfere with his daily activities thereby forcing him to consult a qualified health care professional.

Stigma:

Although literature (Auer et al 2000) points primarily to stigma as being a major impediment to early diagnosis and treatment, in this study, however, only one patient mentioned this as a factor. While this study did not find stigma to be a major reason of patient delay in seeking health care, it may need more intensive interviews and a larger sample to emerge as a direct factor for delays in seeking health care. At an indirect level, stigma may be probably influencing denial of TB and hence delays in seeking care, which patients may not be willing to admit or report.

Self Medication:

Prolonged self treatment practices also caused considerable delay in seeking care. Many patients did not recognize their initial symptoms as being associated with TB, instead they associated their symptoms with minor illnesses such as cold or flu. Hence, patients resorted to self treatment (over-the-counter-medicines, herbal teas) to get relief from symptoms of cold and fever. Some patients in this study chose to wait and see, and this choice was maintained by a hope that their symptoms would resolve without much medical intervention.

CONCLUSION:

The findings of this study clearly suggest that symptom iceberg exists in the study area. A large number of patients did not bring their initial symptoms to the notice of medical professionals for treatment for various reasons. For instance, patients considered their initial symptoms such as cough, loss of appetite as trivial and non-life threatening and felt it was a routine minor ailment. In this study overwhelming majority of patients delayed seeking care by one or more months before seeking effective treatment. None of the patients in this study considered the first signs as indicating the onset of TB. It was observed that there was a strong tendency to explain the initial episode in benign terms. In the first instance, symptoms of cough, intermittent fever, and loss of appetite and/or weakness were merely regarded as a nuisance. Patients happened to recognize the possibility of serious illness only when these symptoms persisted despite self care and treatment sought from RMPs. The reasons for delay in presentation to TB health care services were complex. Patients with early symptoms delayed consultation because they had thought the symptoms were not serious, and would go away. Hence, most of the patients believed that symptoms were caused by something they had eaten, hard work, exposure to sun, cold weather, smoking or alcohol consumption. Patients equated TB disease with chronic cough with sputum, coughing up blood stained sputum and wastage of muscle tissues and skeletal bones, and as these expectations did not match the symptoms experienced by the patients, this caused delay in seeking medical care for initial symptoms.

Hence, they felt no urgency to go to a medical doctor for treatment. Similar to people of rural areas in India and other developing countries, rural patients of this study area have a wide spread perception that illness is not serious in its initial manifestations. Patients allowed disease symptoms to persist for a considerable period of time before seeking formal care rather than seeking treatment at an earlier stage hoping self care remedies (e.g., over-the-counter medicines, herbal teas or medicines), might initially suffice. Perhaps one of the strongest influences on patient delay in seeking health care in this study was that none of the patients viewed themselves at risk of developing TB. Patients made comments like, ‘I was totally stunned to hear that I had TB’, ‘I never ever thought that I would get TB because none of my family members had suffered from TB before’. There was a strong cultural belief among the patients and the community members that only a past history of TB in the family increases one’s susceptibility to TB. Thus many patients did not perceive themselves to be at risk for TB, and hence delayed seeking care.

Longer delays were observed, for example, among extra-pulmonary patients with symptoms of lumps. Extra-pulmonary patients with symptoms of lumps explained that they did not possess knowledge about the significance of the presence of a lump. There is a widespread cultural perception among the extra-pulmonary patients that excessive consumption of hot foods (such as mangoes) or excessive exposure to hot sun could spoil the blood, and this spoiled blood gets accumulated in the form of lumps in the body. Extra-pulmonary patients considered that their lumps were not serious enough to warrant seeking medical care until it was so crippling that it could no longer be tolerated. Some patients delayed seeking treatment for more than one year because lumps were painless and did not interfere with day-to-day activities. Cross-cultural qualitative studies in Nepal, Philippines, and Bangladesh reveal similar understandings of the body, where hot and cold reasoning underlies perceptions of illness, causality and prevention.

It was observed that a delay in the decision to seek treatment was very common among the alcoholic patients. These patients associated their initial symptoms with smoking and alcohol consumption. Alcohol consumption appears to be a major problem in the study region. With the high level of alcohol use and smoking in this region, it can be assumed that the presence of cough, loss of appetite, and weakness is seen as normal to alcoholics and smokers. Hence, these patients believed they were dealing with common symptoms and not TB or not any other major illness, and delayed seeking medical care. This finding concurs with other studies conducted, for example, in Philippines by Auer et al (2000). It was also found that long delays in bringing symptoms to a physician’s attention were due to attribution of symptoms such as intermittent fever and loss of appetite and weight to a folk illness called pasakalu. 38% of patients sought treatment from traditional herbalists prior to the diagnosis of their TB. There was a universal agreement among the patients and community members that there is no biomedical cure for pasakalu. Patients who assigned their initial symptoms to this folk illness resorted to traditional herbal treatment.

Economic constraints and family responsibilities were also cited as reasons for delay in seeking care. Women patients mainly explained lack of time as one of the reasons for delay. Women patients explained that the demands of household work and caretaking of children caused delay. Attaching insufficient meaning or significance to the early signs and symptoms of TB also contributed to delay in availing health services. Study patients equated TB with coughing up blood/sputum, a skinny body and wasting away. Absence of such symptoms led to incorrect interpretation of symptoms or attribution of symptoms to a less serious illness, and led to delay in seeking treatment.

Prolonged self treatment also appears to be one of the major reasons for delay in seeking appropriate treatment. Similar findings have been reported by Allan et al (1979) in Hong Kong. Although stigma has been associated with delay in seeking treatment (Auer et al 2000; Atre et al 2004; Liefooghe et al 1997), this study did not find stigma to be predictor of delay. This finding was not surprising since if a person does not suspect that he/she has a stigmatizing illness, stigma may not be a factor in their decision to seek treatment. Though, it may be possible that the fear of stigma associated with TB, may have made most of these patients subconsciously, to deny that they may have TB.

This study confirms that there is a delay between the onset of symptoms and initiation of appropriate treatment among TB patients in rural Nalgonda. In the biomedical framework, this delay in seeking health care is blamed on the patient who is often regarded as illiterate, negligent, ignorant, and who is made to feel guilty about it. However, the findings of this study clearly suggest there is a need to understand the complex range of socio-cultural factors behind this delay. Health care professionals need to be aware of the fact that patients’ socio-cultural belief systems influence variations in health-seeking behavior. It is hoped that some of the responses that emerged from this study are considered positively by health professionals and patients not blamed for delays in seeking appropriate medical care. The results of this study provide valuable information on the culturally based misconceptions about symptoms and cause of TB. Study findings suggest that there is a need for innovative approaches to disseminate information about symptoms and cause of TB to patients and community members. For prevention programs of infectious diseases such as TB to be effective, the associated patient delays must be actively addressed. The effective implementation of health education in schools, and communities may contribute to positive health outcomes. Reducing patient delays can only be successful by joint efforts of patients, relatives, family members, professionals and the public. Tackling patient delays requires the need to address deeply entrenched perceptions about symptoms and causation of TB.

Any TB control programme needs to therefore move beyond medicalization of the disease, to include the socio-cultural dimensions that influence patient delays and treatment. The findings of this study provide justification for such an inclusive and interdisciplinary approach. Finally, it must be admitted that this present research is only a small contribution to the limited literature on TB in India from a socio-cultural perspective. Further micro-level studies of perceptions of TB based on gender, caste, tribal, religious beliefs are required to provide better insights to our understanding of TB. It is hoped the findings of this study will encourage such future research agendas.

REFERENCES:

1. Allan WGC, Girling, DJ, Fayers PM and Fox W. The symptoms of newly diagnosed pulmonary tuberculosis patients’ attitudes to the disease and its treatment in Hong Kong. Tubercle. 1979; 60: 211-223.

2. Atre SR, Kudale A M, Morankar SN, Rangan, SG and Weiss MG. Cultural concepts of tuberculosis and gender among the general population without tuberculosis in Rural Maharastra, India. Tropical Medicine & International Health. 2004; 9(11): 1228-1238.

3. Auer C, Sarol Jr, Jesus T, Marcel and Weiss M. Health seeking and perceived causes of tuberculosis among patients in Manila, Philippines. Tropical Medicine & International Health. 2000; 5 (9): 648-656.

4. Burgess R. From Key Variables in Social Investigation. Routledge, London. 1986.

5. Cambanis A, Yassin MA, Ramsay A, Squire SB, et al. Rural poverty and delayed presentation to tuberculosis services in Ethiopia. Tropical Medicine & International Health. 2005; 10(4): 330-335.

6. Cheng G, Tolhurst R, Li RZ, et al. Factors affecting delays in tuberculosis diagnosis in rural China: A case study in four counties in Shandong Province. Transactions of the Royal Society for Tropical Medicine & Hygiene. 2005; 99: 355-362.

7. Dracup K, Moser DK, et al. Beyond sociodemographics: Factors influencing the decision to seek treatment for symptoms of acute myocardial infarction. Heart and Lung. 1997; 26(4): 253-262.

8. Fabrega, Jr. H. (1975) The need for an ethnomedical science. Science New Series, 189(4207): 969-975.

9. Green A. An Introduction to Health Planning in Developing Countries. Oxford University Press, London. 1992

10. Helman CG. Disease versus illness in general practice. Journal of the Royal College of General Practitioners. 1981; Vol 31:548-552.

11. Hierscher S and Sommerfeld J. Concepts of illness and the utilization of health care services in rural Malian village. Social Science and Medicine. 1985; 21(4): 469-481.

12. Kleinman A. Patients and Healers in the Context of Culture. University of California Press, London. 1980.

13. Kleinman, A. Writing at the Margin: Discourse between anthropology and Medicine. University of California Press, Berkely. 1995.

14. Lawn SD, Afful B, Acheampong JW. Pulmonary tuberculosis: diagnostic delay in Ghanaian adults. International Journal of Tuberculosis and Lung Disease. 1988; 2: 635-640.

15. Lieban RW. Traditional medical beliefs and the choice of practitioners in a Philippine city. Social Science and Medicine. 1976; 10: 289-296.

16. Liefooghe R, Baliddawa JB, Kipruto EM, Vermeire C and De Munynck AO. From their own perspective: A Kenyan community’s perception of tuberculosis. Tropical Medicine & International Health. 1997; 2(8): 809-821.

17. Long NN, Johansson E, Lonnroth K, et al. Longer delays in tuberculosis diagnosis among women in Vietnam. International Journal of Tuberculosis and Lung Disease. 1998; 3(5): 388-393.

18. Mohan A. & Sharma SK. Epidemiology. In Sharma SK & Mohan A (eds.). Tuberculosis. Jaypee Brothers, Medical Publishers P (LTD), New Delhi. 2001.

19. Rajeswari R, Chandrasekaran V, Suhadev M, et al. Factors associated with patient and health system delays in the diagnosis of tuberculosis in South India. International Journal of Tuberculosis and Lung Disease. 2002; 6(9): 789-795.

20. Rubel AJ and Garro LC. Social and cultural factors in the successful control of Tuberculosis. Public Health Reports. 1992;107(6): 626-636.

21. TB India 2007: RNTCP Status Report. Central TB Division, DGHS, Mo Health and F W, New Delhi. 2007.

22. Wandwalo ER and Morkve O. Delay in tuberculosis case-finding and treatment in Mwanza, Tanzania. International Journal of Tuberculosis and Lung Disease. 2000; 4(2): 133-138.

23. Ware NC and Kleinman A. Culture and somatic experience: The social course of illness in Neurasthenia and chronic fatigue syndrome. Psychosomatic Medicine. 1992; 54:546-560.

24. WHO (1998) Emerging Infectious Diseases in the South-East Asia Region. 50 Years: Commemorative Series-6. Regional Office for South-East Asia, New Delhi. 1998.

Received on 02.12.2012

Modified on 22.12.2012

Accepted on 31.12.2012

Research J. Humanities and Social Sciences. 4(1): January-March, 2013, 12-21