|Year : 2019 | Volume
| Issue : 10 | Page : 3236-3241
The tribal community's perception on tuberculosis: A community based qualitative study in Tamil Nadu, India
Alex Joseph1, Anil Kumar Indira Krishnan2, Aiswarya Anilkumar1
1 Division of Epidemiology, School of Public Health, SRM Institute of Science and Technology, Kattankulathur, Tamil Nadu, India
2 Division of Global Health and Population, School of Public Health, SRM Institute of Science and Technology, Kattankulathur, Tamil Nadu, India
|Date of Submission||20-Jul-2019|
|Date of Decision||20-Aug-2019|
|Date of Acceptance||05-Sep-2019|
|Date of Web Publication||31-Oct-2019|
Dr. Alex Joseph
Assistant Professor, School of Public Health, 3rd Floor, Medical College Building, Intra College Road, SRM Nagar, Potheri, Kattankulathur - 603 203, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Background and Objective: Tuberculosis is a highly contagious bacterial infection. It is a major public health issue with India being the highest prevalent country in the world. The nation has a large and heterogeneous tribal population of approximately 104 million people which accounts for 8.6% of the total population. This study focuses on assessing the tuberculosis scenario amongst the tribal population their perceptions on risk factors of TB, general health problems, health seeking behavior, and challenges faced by them. Methods: The study was conducted using in-depth interviews and focus group discussions in the three sampled study districts namely Nilgiris, Namakkal, and Villipuram of Tamil Nadu, India. A thematic analysis was performed to identify the major emerging themes. Following thematic analysis, an interventional strategy for improving the overall knowledge and awareness among the community health education was imparted. Results: The conducted in-depth interviews and focus group discussions identified major themes that emerged from the codes which included stigma and discrimination, association with HIV, detection of symptoms, health seeking behavior, knowledge and awareness of TB, acculturation, treatment adherence and lack of lab facility. Conclusion: This qualitative study has captured the overall perception towards tuberculosis from the tribal community as a whole as well as from the health workers. The tribal community stigmatized and discriminated people suffering from TB which had an impact on the health seeking behavior as well as on the treatment adherence. The primary care providers were aware of the situation of TB in tribes but were poorly equipped. Primary healthcare providers should in fact, have a crucial role in identification of at-risk subjects, for prompt referrals, and delivery of treatment services.
Keywords: Focus group discussion, health awareness, perception, primary care, Tamil Nadu, TB, tribal, tuberculosis
|How to cite this article:|
Joseph A, Krishnan AK, Anilkumar A. The tribal community's perception on tuberculosis: A community based qualitative study in Tamil Nadu, India. J Family Med Prim Care 2019;8:3236-41
|How to cite this URL:|
Joseph A, Krishnan AK, Anilkumar A. The tribal community's perception on tuberculosis: A community based qualitative study in Tamil Nadu, India. J Family Med Prim Care [serial online] 2019 [cited 2019 Nov 21];8:3236-41. Available from: http://www.jfmpc.com/text.asp?2019/8/10/3236/269991
| Introduction|| |
From time immemorial, TB remains one of the major public health problems around the globe. India with 1.9 million new cases, makes it the highest TB prevalent country in the world. Tuberculosis is ranked ninth among the leading causes of death worldwide from a single infectious agent thus ranking above HIV/AIDS despite timely diagnosis and treatment. Most of the estimated number of incident cases in 2016 occurred in the WHO South-East Asia Region (45%) followed by the WHO African Region (25%), and the WHO Western Pacific Region (17%) and the top five countries with 56% of estimated cases were India, Indonesia, China, the Philippines and Pakistan. India is inhabited by diverse groups of people, with a wide variety of socio-cultural backgrounds. The nation has a large and heterogeneous tribal population of approximately 104 million which accounts for 8.6% of the total population. There are 76 tribal groups categorized as Major Primitive Tribal Group in 18 States/UTs who have different cultural and socio-religious beliefs, and reside in particular discrete geographic areas. Systematic review of Indian studies estimated pulmonary TB prevalence among tribal people to be 703 per 100,000 and also indicate that the research studies on TB among tribal population are very few. There is a dire need to invest and encourage researchers to work on the research plans for the control of TB in tribal areas. In-depth interviews and focus group discussion helps assess the knowledge, attitude and perceptions regarding TB among the tribal groups. Physical remoteness, high rates of malnutrition, overcrowding, poor ventilation, and poor living conditions contribute to the vulnerability of tribal people to TB and other infectious diseases. This study focuses on assessing the tuberculosis scenario amongst the tribal population, their perceptions on general health problems, TB risk factors, health seeking behavior, and challenges.
| Materials and Methods|| |
The study was approved by the Institutional Ethical Committee of SRM Medical College Hospital and Research Centre, SRM Institute of Science and Technology (SRM MCH and RC on 31/10/2013). Informed consent was taken from every participant before data collection and all the participants were given health education regarding the prevention and treatment of Tuberculosis, participants were given freedom to withdraw from the study at any point of time.
A community-based qualitative study was conducted using in-depth interviews and focus group discussions to get an insight into the knowledge and perceptions surrounding tuberculosis among the tribes in the three sampled study districts of Tamil Nadu.
Study area and population
The study was conducted in Jackanarai at Nilgiris district, Periyakombai at Namakkal district and Vellerikadu at Villipuram district of Tamil Nadu, India. These districts are inhabited by ethnically diverse tribal groups including the Irulars, Malayalis, and Kurumbar.
Data was collected over a period of 6 months, from September 2017 to March 2018. In-depth interviews and focus group discussions (FGDs) were conducted by trained qualitative field investigators and notes were taken in the local vernacular language (Tamil). FGDs are qualitative research methods advocated for medical research wherein informal sessions are conducted in which participants discuss about their perceptions and understanding of any health-related issues. Three focus group discussions were conducted separately for the male and female community with an average of 5-7 people. In-depth interviews were conducted to get intensive individual opinions from ASHAs, VHNs, Anganwadi workers, medical officers, lab technicians, and also from the male and female community members of the primitive tribal groups. Open ended questions were employed to generate the relevant data.
In order to acquire a deeper understanding when explanations were unclear, follow-up questions using probes were incorporated throughout the in-depth interviews and FGDs. The participants actively participated by expressing their perceptions towards the disease, and also about their cultural practices.
Thematic network analysis was used as our framework for analysis. The audio taped in-depth interviews and FGDs were transcribed, translated and cross checked. The analysis focused on developing coding categories where narrative information was organized according to emerging themes. The authors coded each interview independently which were repeatedly applied to the data set through continuous comparisons to ensure data credibility and enhance reliability of data interpretations. Themes were identified through coding which were further refined and developed. Discrepancies in coding and recoding were resolved by consensus.
Following thematic, analysis an understanding of the perceptions, knowledge level, and awareness was obtained. As an interventional strategy for improving the overall knowledge and awareness among the community, the investigators were instrumental in imparting health education. The investigators imparted knowledge among the community members by visiting households and also among self-groups by showing short videos and pictures provided by RNTCP officials to instill an understanding of various aspects of tuberculosis disease, treatment measures, and prevention strategies.
| Results|| |
In-depth interviews and focus group discussions were conducted and major themes emerging from the data were identified. FGDs allowed for more in-depth discussion of the topics than social surveys and it helped stimulate richer responses on the topic. The major themes that emerged from the codes are described below in detail with illustrative quotes from the data.
Stigma and discrimination
Goffman defined stigma as an attribute that is deeply discrediting and that reduces the bearer from a whole and usual person to a tainted, discounted one. Stigmatization by other people or by the person himself/herself leads to discrimination.
The participants chose not to tell their family, friends and acquaintances about the disease due to social isolation. They often isolate themselves to avoid being discriminated. The health workers also claimed that the TB patients are often discriminated as the general public believed that the disease is fatal and either talking or even spending some time with them can develop the disease.
One participant reported:
“I have been travelling almost 60 kms to get medicines for TB from a faraway PHC since I fear my family and friends will isolate me once they know that I am suffering from tuberculosis. They will separate me from being with them and also would fear to send their children with me as well. I would take the pain of travelling all the way to get medicines as I want my disease condition to be a secret.”
One of the ASHA's quoted
“As an ASHA worker we would not definitely isolate any of the patients and we try to impart the confidence to face any kind of discrimination by talking to them. The community often tends to isolate the patients by not allowing them to stand or sit near them fearing the transmission of the disease. This led to patients keeping their condition as secretive as possible.”
Association with HIV
Community's perception of TB strongly influences the attitude of people towards TB patients. Participants described their tendency to hide their TB diagnosis owing to the fear of discrimination because people around felt that if a patient has TB he is sure to be infected with HIV. This misconception has led to discrimination and wrong assumptions. People with TB are invariably perceived to be HIV infected.
A woman aged 39 quoted about the association with HIV as:
“HIV and TB are inseparable. If I have TB, it is obvious that people around me think that I have AIDS. So even if I am diagnosed as TB positive, I would not reveal it to my peers because they will confirm that I am HIV positive also.”
The health worker, VHN who was interviewed explained the community's call on HIV and AIDS as given below:
“HIV and TB co-infection is highly harmful. People isolate and discriminate TB patients thinking that they would be definitely HIV positive. People tend to believe rumours like if you have TB you are sure to get AIDS and few people feel that TB masks HIV tests and the results may be wrong.”
Detection of symptoms
Continuous, persistent, and prolonged cough were the symptoms of tuberculosis reported by most of the participants. People would only seek medical attention if there is prolonged and persistent cough with sputum production. Many of them were confused about the symptoms easily due to other diseases like asthma, pneumonia, and cancer. They only reported the symptoms once it persisted for a longer time. Majority of the people reported loss of appetite, chest pain, breathing difficulties, and vomiting of blood that resulted in physician consultation. Diagnostic delay was caused because the patients never suspected any serious disease and did not feel the urgency to consult a doctor.
A female participant aged 43 reported:
“My relative was suffering from TB but we could not identify it initially because we never suspected him to have the disease. He used to cough continuously and started becoming thin. Only when we found blood in his sputum, we sought medical services.”
The medical officer's view is as noted below:
“Patients seek medical services only when the symptoms are severe. They are not fully aware of the symptoms, mode of detection, severity of the disease and medical procedures for cure. We screen for TB among patients who have continuous fever for more than a week and those who do not respond effectively for antibiotics.”
Health seeking behavior
Health seeking behavior refers to what people do individually or collectively to maintain health. Participants were asked to describe where they would seek treatment for his/her ailment. Whenever the participants fell ill, self-treatment was initiated by purchasing drugs by themselves. They also sought treatment from nearby PHCs. If the condition worsens, they would be referred to the government hospitals with all the facilities. Majority of the patients consulted physicians at the nearby PHCs if they were not feeling well.
A 52-year-old man quoted:
“When I feel ill, I consume tablets or else get injection from the nearby PHC. Most of my family and friends seek treatment from the nearby PHCs or government hospitals.”
A school teacher described about the health seeking behavior as:
“Generally, the community seeks treatment from the government hospitals as they feel that many of the diseases get cured there. Best quality services are provided by the physicians for treatment and patients are also referred for tests if there is a lack of facility. We also make sure that if any student at school suffers from any ailment, we initially inform the parents and refer them to the hospitals.”
A 25-year-old male educated youth leader:
“Community members considered consulting government hospitals for ailments as they were more feasible and had showed good care results. Initially people consulted nearby clinics or else go to the government hospitals. They seek care from private hospitals only when they do not get the necessary treatment from the government hospitals.”
Knowledge and awareness regarding TB
Knowledge of TB was assessed based on the participant's ability to recognize the cause of the disease, mode of transmission, and preventive methods. The participants were unaware of the causal organism and reported long cough and cold untreated leading to TB. The health workers were fully aware of the disease causations and the tests to be performed for screening. Attitude towards TB reflects the level of understanding of the disease in terms of health seeking behavior and treatment adherence. The FGDs revealed the level of knowledge and awareness of the participants.
A male participant with poor knowledge about the disease reported:
“Tuberculosis is caused by prolonged cough and smoking. People feel lucky that they have TB compared to cancer as we know cancer causes death. Most of the TB patients take medications, some of them die since the medications are not given properly, few others survive as they adhere to the treatment properly. People should stop smoking and drinking as all this can lead to TB”
A health worker reported the awareness levels of the community:
“People are unaware of the bacteria Mycobacterium tuberculosis, the causal agent and the preventive methods that need to be taken. They are partially aware about the mode of transmission of TB. As a health worker, I try to educate the people by creating awareness about the disease as a whole and also inform TB patients on how to prevent its further spread. The family members are also being informed on how to prevent the spread of the disease and also on how to not isolate the patients.”
Few of the participants were fully aware of the disease condition, the mode of transmission, and preventive measures.
One of the participants reported:
“I very well know that TB spreads through air and it can be cured when one's medications are followed as per the instructions. Microbes spread through air when a patient cough without covering his/her face. If the patients seek treatment, they are sure to be cured from this disease.”
Acculturation is the process of social, psychological, and cultural change that stems from blending between cultures. The effects of acculturation can be seen at multiple levels in both the original and newly adopted cultures. The tribal groups have reported phenomenal changes in the social and cultural practices from food patterns, marriage practices, occupation, and health seeking behaviors.
A 45-year-old female participant's view on acculturation:
“There is a tremendous change in the food patterns. Earlier we used to prepare and eat the forest products available like kalli, nowadays we are being provided with rice from ration shops. Most of them have changed their previous food patterns. This has led to undernourishment, as people do not consume healthy products and are vulnerable to diseases like TB, malaria etc.”
A 29-year-old female's description about the marriage and occupation changes:
“Earlier, marriages happened within the same community, now there is acceptance for love marriages. Marriages now happen at mandapam when they have money compared to earlier trends of getting married at their own house. Many of my family members and neighbors work in construction sites to earn better.”
A 35-year-old man reported:
“Long back whenever a person used to feel any form of discomfort, self-treatment was initiated using herbs and traditional methods. Now we have moved on seeking health care services from government hospitals as many of the patients are cured there.”
Supervised treatment involves direct observation of therapy which helps patients who regularly take medications and complete treatment. DOTS providers are also incentivized at certain areas to accomplish their tasks.
The DOTS provider quoted:
“Most of the patients were personal called for and given medications and if they fail to get the drug on a particular day, we directly meet them and ask for the explanations regarding it. Those individuals whose test results are positive are personally met, counseled and are asked to select a DOTS provider to avoid isolation and stigmatization.”
Lifestyle and other habits like, smoking and alcohol consumption are considered barriers for treatment adherence as many of them are alcoholic and fail to take the medication as per instructed. TB coupled with alcohol consumption and smoking has aggravated their condition.
Lack of lab facility
Lab facilities are very essential for sputum testing as the test results are highly important for further treatment procedure. Many of the tests have to be done at the main hospitals and not at the local level since these labs lack those facilities. The labs are also employed with one lab technician who is overburdened by the work and this leads to delayed test results.
Lab technician reported:
“We have all the facilities at the main PHCs and sub centers for sputum testing but we do not have all the facilities at local clinics or labs. Many of the patients are reluctant to go for test as these are not located nearby and they have to travel. There is lack of lab assistants for helping me with the tests and I am overburdened by the work.”
| Discussion|| |
The End TB Strategy formulated at World Health Assembly, proposes the target of ending tuberculosis epidemic globally by 2035. The goal is set for the reduction of TB-related deaths by 95% and active TB incidence reduced by 90%, with reference to the 2015 values.
This qualitative study has captured the overall perception towards tuberculosis from the tribal community as a whole as well as from the health workers. The overall perception in terms of stigma, health seeking behavior, knowledge, awareness, association with other diseases, and cultural changes have been captured. Participants reported that TB patients were often isolated and discriminated due to the fear of transmission of the disease. Fear of discrimination has led to reluctance in seeking treatment and sharing the health condition with closely knit family and friends. The stigmatization and discrimination can be related to one of the qualitative studies conducted in Nepal.
As TB is a common opportunistic illness in HIV positive individuals many of the participants reported TB patients to be stigmatized due to the fact that people believe they are HIV positive. This perception was also found existing in other qualitative studies. This association between TB and HIV is common in Africa; in Malawi were people believed that TB was sexually transmitted owing to it associations with HIV., Late identification of symptoms due to lack of knowledge about TB has led to delay in seeking treatment., Many of the initial signs and symptoms are confused with other health problem. These results mirror the results of a Uganda Study in which most of the participant reported their TB symptom recognition after diagnosis.
Awareness regarding TB among the participants were mixed as few of them were fully aware of the condition but the rest of the members have absolutely no idea about the causal organism, mode of transmission, and preventive methods. Most of the participants were aware that TB is contagious and can be fatal. This study also showed that most of the health workers were trying to create awareness among the community members to control the spread of TB. Many of the interventions implemented from a person level to the governmental level has been studied and reported regarding TB awareness.
Health seeking behavior and acculturation are the other elements which have emerged from the study findings. Cultural and social changes have led to transitions in food patterns, cultural beliefs, marriage practices, and occupations. People believe that transition has led to emergence of many communicable diseases that have deteriorated the health of the community members. Occupational shift and dependence on alcohol and smoking are the other factors that have been perceived by the community. A short study identifying the risk factors associated with TB have included smoking and alcohol consumption to be significantly associated with pulmonary TB development.,
Self-treatment and usage of medications for curing disease have changed as people seek medical services from government hospitals. Though the change is not very rapid, there is a paradigm shift from the prior practices. Due to stigmatization and discrimination, many of the general public fails to adhere to the treatment norms though the health workers are trying to improve the awareness. DOTS providers are also incentivized for proper follow up.
Lack of lab facilities has impacted on delayed diagnosis as many of them fail to get the tests done and they also do not bother to get the results from a distant laboratory. An anthropological study conducted using FGDs identified the main impediments to successful patient outcome to be limited access to TB diagnosis and lack of treatment facilities. This qualitative study highlights the voices of the tribal community and offers a rich source of information about the ground reality on people's perception towards tuberculosis.
Despite providing suggestions on how to undertake future tribal population research interventions was implemented a follow up health awareness. Knowledge imparted among the community members is sure to instill an improvement in their level of knowledge and awareness. As knowledge and awareness are linked to health seeking behavior, treatment adherence, and symptom identification implementation of health awareness among the community can be a major breakthrough in changing the perception of the community towards the disease. This interventional strategy if done across the whole community can reduce the overall disease burden.
From the health workers and the community member's perspectives, the study identified the challenges affecting TB control. Several key persons from the community play an important role in creating awareness about tuberculosis among the general tribal population. Their awareness and knowledge need to be enhanced through awareness campaigns and brief health education classes. There should also be an emphasis on the curability and health seeking behavioral change required among community members.
Studies show that in developing countries primary and community healthcare workers are equipped to diagnose common childhood illness, but many are less equipped for identifying the TB suspects, follow-up them for diagnosis and provide the treatment. Comparing with China India have a substantial TB burden in the world, having a large Rural and Tribal population it is essential to have dependent primary care providers in rural and tribal areas who can detect and refer TB patients for further care,
The benefit of early diagnosis and correct treatment needs to be stressed so that people tend to seek medical services. Lack of primary care facilities for sputum testing and inadequate lab technicians are the other domains which needs to be taken into consideration. Moreover, improving the diagnostic capacity at peripheral health facilities promotes timely diagnosis and treatment of tuberculosis. For both the control and elimination strategies involving primary care providers are the key, which should be based on correct diagnosis and treatment of TB patients.
Finally, it should be understood that health education will be effective only if the health care providers understand the cultural barriers to TB control and they need to create supportive environment. This qualitative study conducted among the tribal community is certain to have implications on developing an innovative health system model to strengthen the primary care system for control of TB in tribal areas.
It is very important that that primary healthcare providers are well oriented towards the basic TB diagnosis and care, thus ensuring early detection and prompt referral to specialized centers to initiate the treatment and follow-up.
Mostly the primary healthcare providers are having a good rapport with the local community and special relationship with patients, there are no best persons than them to promote health awareness and do educational interventions in the community they serve. They are in a better position to identify the high-risk individuals and also provide directly observed short course therapy to improve adherence to treatment.
Declaration of consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Dr. Beena Thomas and her team, ICMR-National Institute for Research in Tuberculosis, Chennai for the guidance and support.
Financial support and sponsorship
The study conducted was funded by the Indian Council of Medical Research (ICMR) with the sanction number - Tribal/89/TB-18/2016-ECD-II.
Conflicts of interest
There are no conflicts of interest.
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