Knowledge, Attitude and Practices

Knowledge, Attitude and Practice about Tuberculosis in India A Midline Survey, 2013

International Union Against Tuberculosis and Lung Disease, South-East Asia Region, New Delhi

Contributors Principal Investigators: Dr. Nevin C Wilson, Dr. Sarabjit S Chadha Co-investigators: Dr. Karuna D Sagili, Dr. Srinath Satyanarayana, Dr. Geetanjali Sharma, Mr. Subrat Mohanty, Ms. Surabhi Joshi, Dr. Prasad BM, Dr. Ajay MV Kumar, Dr. Ramya Ananthakrishnan, Dr. Nalini Krishnan Report compiled and written by: Dr. Karuna D Sagili

© International Union Against Tuberculosis and Lung Diseases All rights reserved.

Design, layout and printing by: New Concept Information Systems Pvt. Ltd. Email: [email protected]

Contents Acknowledgements

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Executive Summary ix-xiv CHAPTER 1 Background 1-10 CHAPTER 2 Results: General Population

11-27

Summary Results

28-29

CHAPTER 3 Results: TB Patients

30-47

Summary Results

48-49

CHAPTER 4 Results: Health Service Providers

50-58

Summary Results

59-60

CHAPTER 5 Results: Opinion Leaders

61-71

Summary Results

72-73

CHAPTER 6 Results: NGO/CBO Representatives

74-83

Summary Results

84-85

CHAPTER 7 Comparison of KAP About TB among Target Groups in Baseline and Midline Surveys

86-90

Summary Results

91-92

ANNEXURES

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List of Tables TABLE 1.1: Number of respondents from general population and TB diseased persons by urban-rural residence

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TABLE 1.2: Number of respondents interviewed (General Population, TB Diseased, Health Service Providers NGO representatives and Opinion Leaders) stratified by zones 8 TABLE 1.3: Number of Respondents (GP, TB Diseased, Health Service Providers, Opinion Leaders & NGOs) interviewed stratified by state

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TABLE 2.1: Socio-demographic characteristics of respondents from the general population interviewed during midline KAP survey, 2013

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TABLE 2.2: Household characteristics of respondents from the general population interviewed during midline KAP survey, 2013

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TABLE 2.3: Household assets owned by respondents from the general population interviewed during midline KAP survey, 2013

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TABLE 2.4: Characteristics of respondents among general population who heard of TB interviewed during midline KAP survey, 2013

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TABLE 2.5: Awareness about symptoms of TB among the respondents from general population who heard of TB interviewed during midline KAP survey, 2013

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TABLE 2.6: Awareness about mode of TB transmission among the respondents from general population who heard of TB interviewed during midline KAP survey, 2013 17 TABLE 2.7: Opinion of respondents from general population who heard of TB on “people who are prone to TB in the community” interviewed during midline KAP survey, 2013 18 TABLE 2.8: Awareness about mode of TB diagnosis among respondents from general population who heard of TB interviewed during midline KAP survey, 2013

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TABLE 2.9: Knowledge about seriousness of TB disease and its curability among respondents from general population who heard of TB interviewed during midline KAP survey, 2013 19 TABLE 2.10: Awareness about the best treatment for TB and the duration of TB treatment among respondents from general population who heard of TB interviewed during midline KAP survey, 2013

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TABLE 2.11: Proportion of respondents who heard of the term ‘DOTS’ and free treatment for TB among the general population interviewed during midline KAP survey, 2013

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TABLE 2.12: Perception of self-susceptibility to develop TB disease among the general population interviewed during midline KAP survey, 2013

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List of Tables

TABLE 2.13: Attitudes towards TB disease, who are prone to TB and how TB patients are treated in their communities among respondents from general population interviewed during midline KAP survey, 2013

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TABLE 2.14: Attitudes towards TB patients and their families from general population interviewed during midline KAP survey, 2013

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TABLE 2.15: Possible practices towards TB patients by respondents from general population interviewed during midline KAP survey, 2013 24 TABLE 2.16: Existing and preferred source of TB related information of the respondents among the general population interviewed during midline KAP survey, 2013

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TABLE 2.17: Respondents reply to ‘visit’ by any individual to provide information regarding TB and the information shared by those who visited

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TABLE 2.18: Summary of key indicators of knowledge about TB among respondents who heard of TB from general population interviewed during midline KAP survey, 2013 27 TABLE 3.1: Distribution of TB patients identified from the household line-listing process during midline KAP survey, 2013

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TABLE 3.2: Socio-demographic characteristics of the TB patients identified and interviewed in the midline KAP survey, 2013

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TABLE 3.3: Household characteristics of the TB patients identified and interviewed in the midline KAP survey, 2013

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TABLE 3.4: Household assets of the TB patients identified and interviewed in the midline KAP survey, 2013

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TABLE 3.5: Awareness about causes of TB among TB patients interviewed during midline KAP survey, 2013

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TABLE 3.6: Symptoms experienced by TB patients prior to diagnosis of TB among TB patients interviewed during midline KAP survey, 2013

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TABLE 3.7: Duration of cough and fever before diagnosis of TB among TB patients interviewed during midline KAP survey, 2013

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TABLE 3.8: Health seeking behaviour of TB patients prior to diagnosis of TB among TB patients interviewed during midline KAP survey, 2013

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TABLE 3.9: Place of diagnosis, number of providers visited and duration of symptoms before diagnosis of TB among TB patients interviewed during midline KAP survey, 2013 38 TABLE 3.10: Treatment initiation, place of treatment and awareness on treatment duration among TB patients interviewed during midline KAP survey, 2013

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TABLE 3.11: General health seeking behaviour of TB patients interviewed during midline KAP survey, 2013

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Knowledge, Attitude and Practice about Tuberculosis in India – A Midline Survey

TABLE 3.12: Tobacco use among TB patients interviewed during the midline KAP survey, 2013 41 TABLE 3.13: Experiences of stigma and discrimination among TB patients interviewed during the midline KAP survey, 2013

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TABLE 3.14: Existing and preferred source of TB related information among TB patients interviewed during midline KAP survey, 2013

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TABLE 3.15: Summary of key indicators of knowledge about TB among TB patients interviewed during midline KAP survey, 2013

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TABLE 4.1: General characteristics of health service providers interviewed during the midline KAP survey, 2013

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TABLE 4.2: Knowledge about TB symptoms, type of TB patients treating and awareness on MDR TB among health service providers who treat TB patients

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TABLE 4.3: TB diagnosis and treatment approach of health service providers interviewed during the midline KAP survey, 2013

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TABLE 4.4: Challenges faced, precautions taken and advices given to TB patients by health service providers interviewed during the midline KAP survey, 2013 55 TABLE 4.5: Perception about DOTS and awareness on RNTCP schemes among the health service providers interviewed during midline KAP survey, 2013

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TABLE 4.6: Predominant source of TB related information among the health service providers interviewed during midline KAP survey, 2013

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TABLE 4.7: Summary of key knowledge and practice indicators of health service providers in treating TB

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TABLE 5.1: General profile of opinion leaders interviewed during midline KAP survey, 2013 61 TABLE 5.2: Knowledge about TB, symptoms, mode of transmission and diagnosis of TB among opinion leaders interviewed during midline KAP survey, 2013

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TABLE 5.3: Knowledge on treatment of TB opinion leaders interviewed during midline KAP survey, 2013

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TABLE 5.4: Role played by opinion leaders in their communities to address TB

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TABLE 5.5: Seriousness about TB disease, awareness about those prone to TB among opinion leaders and behaviour of community towards TB patients

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TABLE 5.6: Attitudes of towards TB and TB patients among opinion leaders interviewed during midline KAP survey, 2013

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TABLE 5.7: Health seeking behaviour among opinion leaders interviewed during midline KAP survey, 2013

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List of Tables

TABLE 5.8: Potential practices towards TB patients among opinion leaders interviewed during midline KAP survey, 2013

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TABLE 5.9: Sources of general and TB related information among opinion leaders interviewed during midline KAP survey, 2013

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TABLE 5.10: Summary of key indicators of knowledge about TB among opinion leaders interviewed during midline KAP survey, 2013

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TABLE 6.1: General profile of NGO/CBO representatives interviewed during midline KAP survey, 2013

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TABLE 6.2: Knowledge about TB, symptoms, mode of transmission and diagnosis of TB among NGO/CBO representatives who heard of TB

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TABLE 6.3: NGO/CBO representatives knowledge about treatment of TB among those who heard of TB

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TABLE 6.4: Role played by NGO/CBO representatives in their communities to address TB

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TABLE 6.5: Attitudes towards TB disease and TB patients among NGO/CBO representatives who heard of TB interviewed in the midline KAP survey, 2013

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TABLE 6.6: Attitudes towards TB patients and their families among NGO/CBO representatives interviewed in the midline KAP survey, 2013

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TABLE 6.7: General health seeking behaviour among NGO/CBO representatives interviewed during midline KAP survey, 2013

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TABLE 6.8: Potential practices towards TB patients by NGO/CBO representatives among those interviewed in midline KAP survey, 2013

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TABLE 6.9: Source of general and TB related information among NGO/CBO representatives interviewed in midline KAP survey, 2013 (All are multiple response questions) 81 TABLE 6.10: Summary of key indicators of knowledge about TB among NGO/CBO representatives interviewed in midline KAP survey, 2013

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TABLE 7.1: Key indicators of knowledge about TB among general population in the midline KAP survey compared with baseline KAP survey

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TABLE 7.2: Key indicators of knowledge about TB among TB patients in the midline KAP survey compared with baseline KAP survey across the 30 districts from 15 states in India

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TABLE 7.3: Key indicators of knowledge about TB among opinion leaders in the midline KAP survey compared with baseline KAP survey across the 30 districts from 15 states in India

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TABLE 7.4: Key indicators of knowledge about TB among NGO functionaries in the midline KAP survey compared with baseline KAP survey conducted across the 30 districts from 15 states in India

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Acknowledgements The Midline KAP survey was conducted as a follow up to the Baseline KAP survey conducted in 2010-11 under Project Axshya supported by the Global Fund. We thank Global Fund for their support. We thank Central TB Division, Ministry of Health and Family Welfare, Government of India and the State and District TB officers from the 15 states where the survey was conducted (Andhra Pradesh, Bihar, Chhattisgarh, Haryana, Karnataka, Kerala, Maharashtra, Mizoram, Orrisa, Punjab, Rajasthan, Tamil Nadu, Uttar Pradesh, West Bengal, Madhya Pradesh) for their support in conducting this survey. We are extremely thankful to Dr. Nevin C Wilson, former Regional Director of The Union SouthEast Asia Office for his guidance and scientific inputs to the survey. We appreciate the efforts of GfK MODE’s research team, especially Dr. R.B. Gupta and Dr. Piyusha Majumdar and their field teams for completing the study successfully within the stipulated time period. We thank all our study participants who participated voluntarily and gave their valuable time by sharing their knowledge, views and opinions to help us understand the knowledge and service gaps in TB control. We thank Dr. Anil G Jacob and Dr. Badri Thapa for their contribution in data analysis ; Mr. Kishore Kumar V and Mr. Babu E.R for supervision of the survey activities; Mr. Deepak Tamang for assisting in data verification and Ms Renu for administrative support. We thank the Project Management Unit, the finance team, the administration team and the State Technical Consultants from the Union’s South East Asia Office for their support in completing this survey. We also acknowledge Project Axshya’s Sub-recipient partners for their support to this survey completion. We thank New Concept for designing and printing this document.

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Executive Summary Background Every year, thousands of people die of diseases that are completely curable. Tuberculosis (TB) is one among them. TB is an infectious bacterial disease that spreads through the air and most commonly affects the lungs. Once infected, a person has about a 10% lifetime risk of developing tuberculosis. The most common symptom of a person with pulmonary TB is a cough of two weeks or more. In 2012, the World Health Organisation (WHO) estimated that 8.6 million people across the world developed TB and around 1.3 million of them died from TB (WHO 2013). India contributes one fourth (26%) of the total global incidence of tuberculosis. The Revised National TB Control Programme (RNTCP) initiated in 1997 covered the entire country by March 2006. Aligned with the WHO-recommended Stop TB strategy, the RNTCP provides free diagnostic and treatment facilities for TB across the country. Every year nearly 1.5 million TB patients are put on treatment under DOTS. The programme has been successful in significantly reducing the prevalence and mortality due to TB in line with the Millennium Development Goals (MDGs). Despite the enormous success of the programme, the incidence of TB continues to be high and there are nearly a million cases annually who do not or are unable to access TB services under RNTCP. In order to enhance the reach and access to TB services, Project Axshya (meaning TB free) was launched in 2010. Supported by the Global Fund, Axshya is being implemented in 374 districts across 23 states in the country focussing on marginalised and vulnerable populations through increased civil society engagement. Axshya is being implemented by International Union Against Tuberculosis and Lung Disease (The Union) in 300 districts across 21 states and by World Vision India in 74 districts across five states. Project activities focus on advocacy, communication and social mobilization (ACSM) along with strengthening systems for enhancing access to diagnostic and treatment services. ACSM as a strategy for TB control has been viewed with concern by TB experts due to limitations in assessing the impact. In order to substantiate the progress of Axshya in achieving its objectives a series of Knowledge, Attitude and Practices (KAP) surveys have been planned at different time points under the project. The baseline KAP survey was conducted in 2010-11 http://axshyatheunion.org/images/documents/kap-survey.pdf). The midline survey was conducted between November 2012 and April 2013. An endline survey is scheduled in the last year of the project. The information generated through these surveys is representative of the various demographic and social characteristics of population living in these districts, keeping in view the relationship between these characteristics to tuberculosis control, and the impact of activities under Axshya.

Objectives of the Midline KAP Survey Midline KAP survey aimed to gather information and assess change in the knowledge, attitude and practices towards TB amongst the key constituent groups observed in baseline KAP survey. In particular, this survey sought to;

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Gather midline information on TB related knowledge among general population, TB patients, opinion leaders, health service providers and NGO/CBO workers. Explore attitudes and experiences of stigma and discrimination related to TB among general public and persons/relatives affected by the disease with particular reference to gender. Understand the individual, social and environmental factors including provider and patient related delay that could contribute to low TB case detection and poor completion of TB treatment. Know gender specific health seeking behaviour in different target groups when they experience TB related symptoms and the places where health care is sought and time taken to seek care. Relationship between TB health care providers and the persons affected with TB and the role of opinion leaders (community influencers) and NGOs/CBOs in TB control efforts. Identify media habits/preferences of the target groups, their sources of information on TB and exposure to mass media channels.

Methodology A cross-sectional community-based survey was conducted in 30 districts where baseline KAP survey was conducted in 2011. The methodology followed was also identical to that used in baseline KAP survey implementation. In brief, the 30 districts were selected by a stratified cluster sampling technique out of the 374 project districts. Districts were initially stratified into the 4 RNTCP zones (north, south, east and west) of the country. The number of districts in each zone was selected in proportion to the distribution of the 374 districts in the respective zones of the country and the required number of districts in each zone was selected by population proportionate to size sampling. From each of these districts, the population was divided into urban and rural primary sampling units (PSUs) of approximately 250 households (the average approximate population in each household is 4 and the approximate size of the primary sampling unit is 1000 population), based on the data available from the country’s 2001 census. Ten PSUs were selected randomly in each district from the urban and rural PSUs in proportion to the districts’ estimated urban and rural population. The study was conducted by The Union, South-East Asia Regional Office with assistance from field investigators of the social research organization GfK MODE. The trained field investigators conducted a household line listing in the identified primary sampling units during the months of November 2012 to April, 2013. After this line listing process, the respondents from the General Population, TB patients, the locally available health service providers, opinion leaders and representatives of NGOs were identified and interviewed by a semi-structured questionnaire designed to provide information on knowledge, attitude and practices of these respondents with respect to tuberculosis.

Results The Results of the Survey in the Target Groups is Summarised below

General population: A sample of 4804 respondents was selected from general population which included 1123 from North, 1279 from East, 1280 from West and 1122 from South zone states. The proportion of male to female was equal (~50% each). About 88% of the respondents had heard of TB, 81% had knowledge that a cough of over 2 weeks could be TB, 71% knew that TB is caused by germs/bacteria and transmits through air. Only 66% knew that TB can be diagnosed by sputum test. 83% of the respondents had knowledge that TB is curable, however only 48% knew that

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Executive Summary

correct duration of the treatment (6-8 months). Only 26% had heard of DOTS and 23% knew that TB treatment is available free under DOTS. Less than half (41%) of the general population said that TB patients are accepted and supported in their communities. Only one tenth felt that female TB patients face problem in their marriages. Nearly half of the respondents (48%) believed that TB patients are a threat to the community. 74% mentioned that they will not share meals with a TB patient and 79% said that will not marry their sons/daughters to an individual who they knew had TB. TB patients: A total of 496 TB patients were identified and interviewed for the survey purposes. Of these, 111 were from North, 179 from East, 100 from West and 106 from South zone states. 369 were from rural and 127 were from urban settings. Nearly 60% were males, 34% were illiterate and 52% had family income less than Rs. 4000 per month and 15% less than Rs. 2000 per month. Less than half (44%) were aware that TB is caused due to germs/bacteria. 71% had heard of free diagnosis and treatment for TB and of these 96% were diagnosed in government facilities. 45% of the respondents had visited 2 or more providers prior to their diagnosis. 81% were diagnosed with TB within one month of onset of symptoms, however only 47% were initiated on treatment within one week of diagnosis. About 59% were taking treatment free of cost under DOTS. Although 76% knew that they have to take the treatment regularly, only 55% knew that correct duration of the treatment as 6-8 months. 35% of the TB patients were using some form of tobacco when interviewed. Most of the TB patients (95%) had shared their disease status with their families/households and almost everyone experienced supportive behaviour from their families. However, only 60% of them informed their disease status to their friends of which 24% experienced discrimination by their friends. Of those who were married, 15% experienced discriminatory behaviour from their partners. Only 17% shared their disease status with their employers of which 34% had to change their work after sharing their status. Health service providers: A total of 523 locally available health service providers in the primary sampling units were identified and interviewed for the survey purposes. Nearly three-fourths of them (73%) did not have any formal qualification. Only 26% were qualified either in allopathy, alternative medicine, nursing or pharmacy. Just over half (53%) knew that a cough of over 2 weeks as a key symptom of TB and 80% would refer the patient to a government facility for sputum test. On diagnosis of TB, 45% of the providers refer the patient to government health centre for free treatment under DOTS, 12% start treatment on their own and the remaining refer to other sources like private clinics etc. Of those who start treatment on their own, 71% follow allopathy system of medicine. 76% of the providers knew the correct duration of treatment as 6-8 months. Overall 75% of the HSPs felt that DOTS was the best treatment for TB. Only one third (29%) of the HSPs had heard of multi-drug resistant TB and of them 76% knew that MDR was diagnosed by culture and drug susceptibility testing. The predominant source of TB related information for the HSPs was CME/Training programs (38%) followed by peers/colleagues (34%). Opinion leaders: A total of 611 opinion leaders (Village Pradhan, Sarpanch/Panch/Ward members, religious leaders, teachers or health functionaries like Auxiliary Nursing Midwife and Anganwadi Worker) were interviewed. There was almost equal representation of male and female leaders (52% male and 48% female) and most of them were literate (68% secondary education and above). 94% of them had heard of TB and 90% knew that cough of over two weeks or more is the predominant symptom of TB, 78% knew that TB is transmitted through air when the diseased person coughs or sneezes and almost 72% knew that sputum has to be tested for the diagnosis of tuberculosis.

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More than 90% of the opinion leaders knew that TB is curable, that allopathic medicines are the predominant mode of treatment of tuberculosis and 53 % knew that the duration of TB treatment is for 6-8 months. 88% of the opinion leaders informed that the Government hospitals are the places for TB diagnosis and treatment. Two thirds (60%) of the opinion leaders had heard of DOTS and were able to associate it with tuberculosis. Less than one fifth of the respondents (17%) had taken any initiative to address TB control in their localities and the most common form of initiative was by organising camps and rallies for TB awareness. A majority of the opinion leaders (77%) strongly agreed that female TB patients face problem in their marriages. About 40% agree that daily wage labourers suffering from TB should not be allowed to work. Three-fourths of them (73%) said that they will not share meals with TB patients and would not marry their sons/daughters to someone they knew had TB anytime in the past. NGO/CBO representatives: A total of 93 NGOs/CBO representatives were identified in the primary sampling units. More than three fourths (78%) of the respondents knew that TB is a major public health problem in our country and 94% of them knew that TB is completely curable. Nearly 90% of them were aware that cough of more than 2 weeks was the key symptom for TB and that TB spreads through air when a TB diseased person coughs or sneezes and nearly all persons mentioned that allopathic system of treatment is the best method to treat tuberculosis. 84% of them had heard of DOTS and 90% knew that diagnosis and TB treatment is provided free of cost at all government health facilities. Only 32% knew that the treatment has to be taken for 6-8 months duration. Only 14% of them were aware of the RNTCP schemes, of which 70% were willing to collaborate with RNTCP. Nearly three-fourth (70%) of the respondents felt that female TB patients face problems in their marriages. Over 80% will not share meals with a TB patient and will not marry their sons/daughters to individuals who they know had TB.

Comparison of Knowledge about TB among Respondents in Baseline and Midline Surveys

General Population: The total sample number in baseline survey was 4562 and in midline survey the comparable number was 4804 from the same 30 districts under Project Axshya. The proportion of respondents who had heard of TB was 84% in baseline which increased to 88% in midline. The proportion of respondents who knew cough of >2 weeks could be TB was 62% in baseline which increased to 72% in midline. The proportion of respondents who knew that TB is caused by bacteria and is transmitted through air was 50% in baseline which increased to 63% in midline. The proportion of those who knew TB is curable did not change (73% in baseline & midline). The proportion of those who knew that the correct duration of treatment is 6-8 months increased from 38% in baseline to 43% in midline. Overall, the proportion of respondents who had correct knowledge about TB i.e. heard of TB, and know that cough of >2 weeks as key symptom of TB; know that TB is curable and had heard of DOTS increased from 18% in baseline to 32% in midline survey. This change is statistically significant (p2 weeks could be TB increased from 78% in baseline to 88% in midline. The proportion of those who knew TB is curable did not change (92% in baseline & 91% in midline). The proportion of respondents who knew that sputum test is used for TB diagnosis had decreased from 80% in baseline to 69% in midline and also those who knew the correct duration of treatment as 6-8 months decreased from 62% in baseline to 53% in midline. The proportions of respondents who had heard of DOTS decreased from 68% in baseline to 60% in midline, and the proportion of opinion leaders who took any initiatives in TB control decreased from 22% in baseline to 17% in midline. NGO/CBO representatives: A total of 51 NGO representatives were interviewed in baseline survey and 93 representatives were interviewed in midline survey. There was a decrease in the proportions of respondents who knew cough of >2 weeks as a key symptom from 92% in baseline to 88% in midline survey. When compared with baseline findings, there was a significant increase in proportion of representatives who knew that treatment of TB is through allopathic medicines (51% in baseline to 85% in midline). However, there was an equal decrease in proportions who knew the correct duration of TB treatment as 6-8 months (80% in baseline to 31% in midline).

Limitations of the Survey

While we believe that the findings are valid, there are some limitations to the study. First, these data are not nationally representative but representative of the 374 Axshya intervention districts. These districts were selected for the project interventions by RNTCP based on their relatively poor programme performance. Second, the study identified respondents based on a door-to-door household survey and some of the respondents were identified based on self-reporting (e.g. TB patients, opinion leaders, heads of the NGO representatives). Third, only 10% of respondents of all stakeholder categories were re-visited to cross check the accuracy of the information gathered by the field investigators and was found to be accurate in more than 95% of the cases. Fourth, we were not able to interview nearly 10% of the TB patients identified in this survey due to certain operational and ethical reasons (like unwillingness to providing consent) despite repeated attempts by the field staff.

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Key Recommendations l

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Priority should be given to make the general population aware of correct knowledge on TB through various ACSM programs. General health awareness programs could be used as a platform for TB awareness. The most-accessible and most used media sources should be used to disseminate information on TB. Detailed survey analysis on media use could throw light on individual preferences. Stigma and discrimination towards TB patients among general population is still prevalent and needs to be addressed contextually. Qualitative studies on the reasons of existing stigma and discrimination could help in finding ways to create stigma free societies for TB patients. It is essential that all TB patients know about the cause and mode of transmission of TB, duration of treatment, need for regular medication and availability of free diagnosis/treatment. Most of these facts are key to treatment success and infection control. Immediate interventions to reduce delay in diagnosis and treatment initiation are a must. Awareness among TB patients on tobacco use and its harmful effects on their treatment outcomes needs to be enhanced with support systems for cessation in place. Opinion leaders are a very strategic group to involve and made responsible to create TB free villages and wards. They resource need to be equipped adequately and engaged in TB care and control. Local NGOs and non-registered groups should be encouraged to participate in TB care and control with improved strategies as most of them felt that though they want to be part of the programme, they are discouraged due to technical and financial delays at the end of government.

Conclusion In conclusion, this community-based survey provides the current levels of knowledge about TB and attitude and practice of various stakeholders in the context of TB. It also assesses the changes in the knowledge levels from the baseline survey conducted in 2011. Various indicators show good progress in the work, while at the same time other indicators also show gaps and opportunities to strengthen the TB control programme. The recommendations highlight the immediate measures to improve India’s TB control programme. Further detailed analysis of the survey findings could contribute significantly in improving strategies and in designing interventions to control TB in India.

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CHAPTER

1 Background

The Global Burden of Disease TB is an airborne infectious disease caused by Mycobacterium tuberculosis and is one of the leading causes of morbidity and mortality worldwide. As per the WHO Global TB control report 2013, about 8.6 million TB cases were estimated to have occurred across the globe in 2012, of which 1.3 million have resulted in death. In 2012, ~ 1.5 million TB cases were notified by the national programme in India. This included 1.18 million new cases and 0.28 million retreatment cases. However, it is estimated that globally about 3 million TB cases are missed in 2012, of these about 30% are estimated to be from India1. Among the new cases 2.2% and among the retreatment cases 15% were multi-drug resistant (MDRTB); with 64,000 MDR-TB cases among the notified TB cases. It is estimated that 1.1 million (13%) out of 8.6 million TB patients were co-infected with HIV and 75% of these were from African region.

The TB Control Strategy World Health Organisation and its partners across the world are implementing a six point Stop TB Strategy which builds on the successes of DOTS while also explicitly addressing the key challenges facing TB. Its goal is to reduce the global burden of tuberculosis by 2015 by ensuring all TB patients, including for example, those co-infected with HIV and those with drug-resistant TB, benefit from universal access to high quality diagnosis and patient-centered treatment. The strategy also supports the development of new and effective tools to prevent, detect and treat TB. The Stop TB Strategy underpins the Stop TB Partnership’s Global Plan to Stop TB 2006-2015.2 The Stop TB strategy has 6 key components: l Pursue high-quality DOTS expansion and enhancement l Address TB/HIV, MDR-TB and other challenges l Contribute to health system strengthening l Engage all care providers l Empower people with TB, and communities l Enable and promote research All high TB burden countries across the world recognise and have endorsed the importance of completely implementing all components of the strategy for reducing the burden of TB.

TB Control in India India is one of the most populous countries with high TB burden and high HIV burden. Combined with other risk factors for TB including malnutrition due to poverty, migration, large slum dwellings, tobacco smoking and alcohol abuse pose a huge threat to TB control in India.

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Global TB Report, WHO 2013 Stop TB Partnership and World Health Organization, Geneva (2006) Global Plan to Stop TB 2006–2015

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In 2012, RNTCP notified over 1.4 million TB cases. The treatment success rate for smear positive TB was 88% in new cases and 75% in retreatment cases. Over 16,000 MDR cases were diagnosed of which about 14000 were started on treatment3. The Revised National TB Control Programme (RNTCP), based on the internationally recommended Directly Observed Treatment Short-course (DOTS) strategy, was launched by the Government of India in 1997, and expanded across the country in a phased manner. Full nationwide coverage was achieved in March 2006. The goal of RNTCP is to decrease mortality and morbidity due to TB and cut transmission of infection until TB ceases to be a major public health problem in India. Initially the objectives of the programme were to achieve and maintain a cure rate of at least 85% among New Sputum Positive (NSP) patients and to achieve and maintain case detection of at least 70% of the estimated NSP cases in the community.

Project Axshya “Axshya” is a project co-ordinated by two civil society representative organisations, namely International Union Against Tuberculosis and Lung Disease (The Union) South-East Asia Regional Office located in Delhi and World Vision India (WVI). The project is supported through a the Global Fund grant for the period 2010-15. The overarching objectives of Axshya is to support the RNTCP to expand its reach, visibility and effectiveness, engaging community-based providers to improve TB services, especially for women and children, marginalized, vulnerable and TB-HIV co-infected populations. This is being done in 374 districts (300 districts by The Union and 74 districts by WVI) across 23 states of India. For more details please visit www.axshya-theunion.org/.

The expected outcomes of the Project Axshya Greater community involvement through increased awareness and mobilisation

Enhanced involvement of all health care providers

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Increased case notification Decrease in loss to follow up rate l Improved treatment success rates l Universal access to quality TB services l

Increased access to TB control services especially by vulnerable and marginalised populations

Increased political commitment and increased allocation of resources for TB control

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Global TB Report, WHO 2013

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Chapter 1 Background

Knowledge, Attitude and Practices (KAP) Survey The Knowledge, Attitudes and Practice survey is a tool to measure changes in knowledge, attitudes and practices in response to a specific intervention. It is also considered as statistically representative of a specific population regarding the information known, believed or practiced concerning a particular subject. The socio-cultural and economic aspects of a given community play a significant role in the implementation and success of a specific public health initiative, to this end KAP surveys are ideal and widely practiced. KAP studies provide information about the existing public health work in a given area at an implementation level, the success or gaps of the current intervention, they help in identifying the knowledge gaps, cultural beliefs or behavioural patterns that may facilitate or create barriers for the proposed public health initiative. In the context of TB control, these surveys could also help in setting priorities, establish baseline levels and measure the changes due to intervention4. Hence, baseline, midline and end line KAP surveys have been incorporated as a part of Axshya to assess the changes in the knowledge, attitude and practices towards TB in the project districts. The baseline KAP survey was conducted in a sample of 30 Project Axshya districts during January – March 2011. The study established the baseline levels of knowledge, attitudes and practices among general population, TB patients, opinion leaders, health care providers and NGOs and CBOs5. During and after the baseline survey, Project Axshya was implementing activities including high level advocacy at national and state level, along with the sensitisation and training programmes at district and community levels. The midline survey was planned to measure changes in the knowledge, attitude and practices concerning TB in the target groups. The findings may help in identifying potential gaps that need to be addressed to fulfill the goals of Project Axshya. The midline survey was planned during the period October – December 2012. However due to logistical and operational delay, the field work was completed in April 2013.

Objectives of Midline KAP Survey The main aim of the midline KAP survey is to assess levels of knowledge, attitude and practices towards TB among the target groups and measure any changes in comparison to baseline KAP survey, specifically; l

TB related knowledge among general population, TB patients, opinion leaders, health service providers and NGO/CBO workers. l Attitudes and experiences of stigma and discrimination related to TB among general public and persons/relatives affected by the disease. l The attitudes of respondents from different target groups towards TB patient with particular reference to gender. l The individual, social and environmental factors including provider and patient related delay that could contribute to low TB case detection and poor completion of TB treatment.

4 5

http://www.stoptb.org/assets/documents/resources/publications/acsm/ACSM_KAP%20GUIDE.pdf http://www.axshya-theunion.org/Documents/KAP.pdf

3


l

l l l l

Health seeking behaviour of women and men from the general population, especially vulnerable groups such as people living in hard to reach areas, backward communities and those from tribal areas when they experience TB related symptoms and describe the places of health care sought and time taken to seek care. The relationship between TB health care providers and those affected with TB, the role of opinion leaders (community influencers) and NGOs/CBOs in RNTCP. Media habits or preferences of the target groups, their sources of information on TB and exposure to mass media platforms. The preferred or trusted communication channels of the target groups for receiving messages related to TB. The knowledge, attitudes and practices of the general public and TB patients towards tobacco use/control.

Methodology Study Design

The Midline KAP survey is a cross-sectional survey among the target groups in 30 districts of Project Axshya. In order to maintain comparability with the baseline survey, the methodology adopted was similar to that of baseline survey but for a few additions in the objectives and questionnaires. The survey instrument/tool is a semi-quantitative questionnaire specifically designed for each target group. The instrument was translated into eight local languages and pilot tested before being administered to the target groups.

Sample Size

The sample size was calculated for estimating the change in the proportion of the general population with appropriate knowledge on critical aspects of TB (the primary objective of the survey). During the baseline survey the proportion of population who had correct knowledge about TB i.e. heard of TB, knew that cough of over 2 weeks is a symptom of TB, knew that TB is completely curable with 6-8 months of treatment and heard of DOTS was 12%. Since the baseline KAP survey, Project Axshya has been conducting various interventions like sensitization meetings of panchayati raj members, self-help groups, gaon kalyan samitis (Village Health and Sanitation Committees), local NGOs and developing advocacy tools for TB awareness. Therefore, we expect an improvement in knowledge, attitudes and practices. We hypothesised that the proportion of population who had heard of TB, knew that cough of over 2 weeks is a symptom of TB, knew that TB is completely curable with 6-8 months of treatment and heard of DOTS will be at least 25%, which is double the proportion we found in the baseline survey. As described in the methodology used in the baseline survey and if ~4500 persons from the general population are studied, then we will have more than 80% power to assess if the change is 2% or more at the aggregate level. At the district level by studying 160 persons per district we will have an 80% power to assess if the change is more than 1.6 times that of the baseline. For the other group of respondents, all eligible persons identified in the primary sampling unit were interviewed. A three stage stratified random sampling method was used to select target respondents for the study.

4


Stage 1: Selection of Districts

Thirty districts out of the 374 districts of Project Axshya were selected for the survey. These 30 districts have representation from the districts covered by the two PRs (Principal Recipients of Global Fund) The Union and World Vision. Since the Union is implementing the project in 300 districts and World Vision in 74 districts, 24 out of 30 districts were those covered by the Union and 6 by World Vision. The list of all 30 districts is provided in Annexure 1. The districts were selected by a stratified cluster sampling technique. Districts were initially stratified into the 4 RNTCP zones (north, south, east and west) of the country. The number of districts in each zone was selected in proportion to the distribution of the 374 districts in the respective zones of the country and the required number of districts in each zone was selected by population proportionate to size sampling.

Stage 2: Selection of PSUs

In each district, 10 primary sampling units which were villages for rural areas and wards for urban areas were selected by Population Proportional to size sampling procedure (PPS). The urban: rural ratio of the primary sampling units in each district was maintained in proportion to the district’s actual urban – rural population ratio. For selection of PSU, the 2001 census list served as a sampling frame (as 2011 Census data was not yet available during the study design period). The list of villages and wards were separately drawn from each district. The villages and wards were arranged in the ascending order based on their population size. The required number of PSUs from each district was selected using circular systematic sampling procedure.

Stage 3: Selection of Households

In every primary sampling unit, a house listing operation was carried out. The listing provided the necessary sampling frame for identification of respondents from the general population and for selecting self-reported TB diseased persons from each primary sampling unit. The household listing process involved assigning numbers to each residential structure, recording address and location of these structures, and listing the numbers of individuals in the households, identification of the head of the household and self-reported TB diseased persons. In order to obtain the awareness about tuberculosis among general population, 16 individuals aged 18 years and above interviewed from each PSU. These 16 persons were selected by systematic random sampling method from the list of persons identified in the house listing process; the male to female ratio selected for the interview was 1:1. All self-reported TB patients identified in each primary sampling unit were approched and those who gave consent were interviewed. All health service providers, NGOs/CBOs representative and two opinion leaders working in the primary sampling units were line listed and interviewed. While interviewing the respondents of the general population and the TB patients, they were asked to identify the health service providers that they usually visit and opinion leaders that they usually seek advice for health/medical care related matters. All such medical providers if located within the PSU were interviewed. The NGOs working in the area of the PSU were identified based on interviews of the village/ward representatives, and then the local heads or representatives of these identified organisations were interviewed as per the availability during the survey.

5


Geographical distribution of 30 districts where baseline and midline KAP surveys have been conducted

Axshya

Survey Instruments

The main instrument used for collection of data in this survey was a set of separate semi-structured questionnaires for General Population, TB diseased, Health Service Providers, Opinion Leaders and NGOs. The questionnaire was developed in English and then translated in 9 local regional languages (Hindi, Bengali, Marathi, Telugu, Kannada, Tamil, Malayalam, Oriya, and Assamese). The final translated questionnaire was pilot-tested with the target groups, mainly for language checks and partly to ascertain that most issues were accurately covered. The English versions of the questionnaires are enclosed in annexures. Operational Definition of Target Groups l General Population: The respondents were persons identified from the general population who are the usual members of the household. Information on age, sex, marital and education status was collected. Efforts were made to get information on the Standard of Living Index. l TB Patients: The respondents in this group were TB patients identified from the household listing (both undergoing treatment and who have taken treatment in last 1year). The demographic and socio-economic statuses of these people were obtained.

6


l

Health Service Providers: Any practicing medical practitioners (unqualified providers, qualified doctors, nurses, ANM’s PHC workers, AYUSH providers, ASHA workers) in the Government and Private (including NGO or Corporate sector) in the community were considered as health care providers. l Opinion Leaders: The respondents in this group were opinion leaders like religious leader, teachers, ward member or panchayat member of a community. l NGO/CBO Representatives: NGO or CBO representatives working in health and non–health sector. Inclusion criteria: l Any individual whose age is ≥18 years l Any individual who is identified as a TB patient by self reporting/line listing/reported by the head of the household Exclusion criteria: l Any individual who is not willing to give consent to participate in the study l Those individuals who are selected in the household listing process but unavailable for the interviews in spite of appointments on two consecutive days Key areas discussed in the questionnaires were: Awareness on TB Signs and symptoms of TB Knowledge, Attitude & Practice related to TB

Treatment of TB Tobacco use Source of awareness Attitude towards TB patients Existing health facility

Health care facilities provided to people suffering from TB

Infrastructure available Diagnostic preferences Attitude of health worker towards TB patients

Stigma and discrimination towards TB patients

Stigma in workplace Stigma in health care settings Stigma in family/friends/immediate community Link with existing HIV/AIDS stigma

Health seeking behaviour of people affected with TB

Type of service provider; Government, private, NGO Reason for choosing it Services provided in health facilities Age and sex

Socio-cultural and demographic factors

Caste and religion Education and occupation Standard of living index Mode of entertainment; radio, television, films

Media habits and preferences

Source of Information for disease related knowledge Programme help in changing the attitude of people Share the knowledge with other person

7


Data Collection

Fieldwork was carried out in all the 15 states (Uttar Pradesh, Punjab, Haryana, Rajasthan, West Bengal, Orissa, Bihar, Mizoram, Karnataka, Tamil Nadu, Kerala, Andhra Pradesh, Maharashtra, Chhattisgarh and Madhya Pradesh) simultaneously from November 2012 and completed in April 2013. The total numbers of respondents in each stakeholder group stratified by zone and state is given in Tables 1.1, 1.2 and 1.3. TABLE 1.1: Number of respondents from general population and TB diseased persons by urban-rural residence Sample Coverage

Rural

%

Urban

%

Total

Number of General Population Interviewed

3360

70

1444

30

4804

Number of TB Diseased Persons Interviewed

369

74

127

26

496

The total number of respondents covered during the survey was 6527. Zone wise number of respondents interviewed from each category is provided in the Table 1.2 TABLE 1.2: Number of respondents interviewed (General Population, TB Diseased, Health Service Providers NGO representatives and Opinion Leaders) stratified by zones Sample coverage

North

East

West

South

Total

General Population

1123

1279

1280

1122

4804

TB Diseased Person

111

186

93

106

496

Health Service Providers

111

134

78

200

523

Opinion Leaders

135

180

163

133

611

2

25

5

61

93

NGOs

TABLE 1.3: Number of Respondents (GP, TB Diseased, Health Service Providers, Opinion Leaders & NGOs) interviewed stratified by state State

GP

TB Diseased

Health Service Providers

Opinion Leaders

NGOs

Uttar Pradesh

643

50

54

75

2

Punjab

160

8

12

22

-

Haryana

320

53

45

38

-

Rajasthan

160

4

17

21

-

West Bengal

160

24

20

26

3

Orissa

319

22

31

45

8

Bihar

640

105

61

85

9

Mizoram

160

28

22

24

5

Karnataka

160

12

20

22

1

Tamil Nadu

483

27

58

52

17

Kerala

319

57

104

40

43

Andhra Pradesh

160

10

18

19

-

Maharashtra

160

12

10

20

4

Chhattisgarh

160

7

10

18

-

Madhya Pradesh

800

77

41

104

1

Total

4804

496

523

611

93

8


Recruitment, Training and Fieldwork GfK-MODE, conducted 2 Training of Trainers (TOT) workshops; one in north zone and one in south zone. The purpose of the workshops was to ensure uniformity in data collection procedure in different states. The Union’s technical team also attended the workshop to give its technical inputs to the trainers. Field Executives received training in the workshop. They subsequently trained the field staff (Investigators and supervisors) in each state according to the standard procedures discussed in the TOT. Training consisted of classroom training, demonstration and practice interviews, as well as field practice. Field staff in each state was trained over a period of three days. The fieldwork in each state was carried out by a number of interviewing teams, each team consisting of four investigators and one supervisor. One such team was deployed in each state. Prior to the main field work at each primary sampling unit, household listing was carried out by a team of two listers in order to list all persons and TB diseased persons in each PSU. Experienced and qualified interviewers were hired from our panel of investigators, taking into consideration their education background and experience in health-related surveys. The field supervisor was responsible for the overall management of the field team. In addition, the field supervisor conducted spot-checks to verify the accuracy of key information, particularly with respect to the eligibility of respondents. In each state monitoring and supervision was performed by the field executive of Gfk MODE and The Union’s staff. From time to time, The Union’s technical staff visited the field sites to monitor the data collection operation.

Ethics Ethics approval was obtained from the Union’s Ethics Advisory Group. This is an approved activity under the Global Fund supported Project Axshya being implemented in collaboration with Central TB Division, Ministry of Health and Family Welfare, Government of India. The protocol was also submitted to the REACH Independent Ethics Committee, Chennai, Tamil Nadu. Prior to conducting the survey, permission was obtained from the community heads/representatives of the PSUs in each district. All the participants were informed about the study and were invited to participate in the study after written informed consent was obtained.

Data Processing The collected data was double entered and validated using CSPro v3.1. All completed questionnaires were sent to the analysis office of the GfK MODE for editing and data processing (including office editing, coding, data entry, and machine editing). Although field supervisors examined every completed questionnaire in the field, the questionnaires were re-edited by office editors. The office editors checked all skip sequences, response codes that were circled, and information recorded in filter questions. The data were entered directly from the pre-coded questionnaires, usually starting within one week of the receipt of the first set of completed questionnaires. Data entry and editing operations were usually completed a few days after the end of fieldwork in each state. Data was double entered by two different data entry operators and validated. The errors were corrected using the hard copy of the questionnaire and final datasets were generated for each of the target group.

9


After GfK submitted the validated data, the Union technical team cross-checked the data randomly and appropriate steps were taken in case of any erroneous data entered. The validated data was then exported to EpiData and used for analysis. The raw data was cleaned and analysed using EpiData Analysis software. Each target group was analysed for the respondent’s knowledge about TB, attitude and practices towards TB affected individuals. Changes in KAP were measured within target groups from baseline to midline survey and analysed for the key indicators.

10

CHAPTER

2 Results: General Population

A total of 65,209 households were line-listed from 300 primary sampling units covering 3,14,913 general population of which 4804 individuals were interviewed. Number of respondents zone wise – north zone (7 districts) N=1123; east zone (8 districts) N=1279, west zone (8 districts) N=1280 and south zone (7 districts) N=1122. Of those interviewed, 3360 were from rural settings and 639 were from tribal districts.

Demographic Profile Table 2.1 describes the socio-demographic characteristics of respondents from the general population. As with other recent demographic data regarding India’s population profile, the bulk of the respondents fall in the middle age group, with 54% of the individuals between the age of 26 and 45 years. In the south, the bulk of respondents are aged over 46 years. The majority of the respondents are married (87%). Being as close to representational ratios for gender, the sexes are equally divided (50-50). Similarly, about 42% of the respondents at the all-India level have had at least Primary or Secondary education with the exception of northern (38%) and eastern (34%) regions. One third (31%) of the respondents are either illiterate or have no formal education with majority of them from east zone (43%). TABLE 2.1: Socio-demographic characteristics of respondents from the general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SEX Male

565

(50)

638

(50)

638

(50)

567

(51)

2408

(50)

Female

558

(50)

641

(50)

642

(50)

555

(49)

2396

(50)

18-25yrs

233

(21)

242

(19)

252

(20)

158

(14)

885

(18)

26-35yrs

323

(29)

374

(29)

433

(34)

300

(27)

1430

(30)

36-45yrs

244

(22)

292

(23)

311

(24)

308

(27)

1155

(24)

46+

323

(29)

371

(29)

284

(22)

356

(32)

1334

(28)

Illiterate

346

(31)

418

(33)

265

(21)

81

(7)

1110

(23)

Literate but no formal education

70

(6)

123

(10)

97

(8)

116

(10)

406

(8)

Less than primary

74

(7)

106

(8)

137

(11)

166

(15)

483

(10)

AGE

EDUCATION

Primary

194

(17)

250

(20)

295

(23)

253

(23)

992

(21)

Secondary

240

(21)

185

(14)

304

(24)

301

(27)

1030

(21)

Senior secondary

129

(11)

105

(8)

113

(9)

98

(9)

445

(9)

Graduation and above

70

(6)

90

(7)

68

(5)

83

(7)

311

(6)

Not recorded

0

(0)

2

(0)

1

(0)

24

(2)

27

(1)

Contd...

11


North

%

East

%

West

%

South

%

Total

%

MARITAL STATUS Married

928

(83)

1128

(88)

1107

(86)

1000

(89)

4163

(87)

Unmarried

134

(12)

91

(7)

144

(11)

98

(9)

467

(10)

Divorced

3

(0)

5

(0)

3

(0)

1

(0)

12

(0)

Widowed

56

(5)

53

(4)

24

(2)

23

(2)

156

(3)

Separated

2

(0)

2

(0)

2

(0)

0

(0)

6

(0)

145

(13)

307

(24)

335

(26)

346

(31)

1133

(24)

OCCUPATION Wage labour Skilled labour

34

(3)

39

(3)

62

(5)

81

(7)

216

(4)

Self employed

34

(3)

28

(2)

68

(5)

65

(6)

195

(4)

Service (govt. and private)

43

(4)

100

(8)

65

(5)

62

(6)

270

(6)

Business

66

(6)

93

(7)

82

(6)

70

(6)

311

(6)

Agriculture/ cultivator

262

(23)

197

(15)

173

(14)

111

(10)

743

(15)

Unemployed

32

(3)

40

(3)

29

(2)

45

(4)

146

(3)

Housewife

409

(36)

408

(32)

377

(29)

276

(25)

1470

(31)

Student

77

(7)

47

(4)

72

(6)

37

(3)

233

(5) (2)

Other

21

(2)

20

(2)

17

(1)

29

(3)

87

Total

1123

(100)

1279

(100)

1280

(100)

1122

(100)

4804

By occupation, the single largest category of respondents is in the category of housewives. This is possibly because of their obvious presence at home when the survey data investigators visited homes. Logically correlated with this observation is the category with fewest respondents which included workers, skilled labor, the self-employed and those in the service professions, all below 10% of all respondents. Strikingly, over one-third (39%) of all respondents are wage-laborers and cultivators. This is true across the east, south and west regions. In the north, the bulk of respondents work in the agricultural sector. Table 2.2 describes the household characteristics of respondents from the general population. Interestingly, close to half of respondents in the north and the south zones live in pucca houses (North: 59%; South: 46%) whereas this is below 40% in the east and west. Similarly, in the south, the bulk of the respondents own their own homes (74% in the south, compared with 55% in the east). On the whole, 45% of the respondents have access to safe drinking water (user defined) through private tap/private hand pump. There is an interesting variation between regions with respect to access to safe drinking water: 38% of those in the north have access to drinking water through a private tap; this is lower in the south – 35%. The east is very low on this parameter (only 9% of those in the east have access to safe drinking water through private taps). The bulk source of fuel is biomass – in the north, wood and dung cakes account for 89% of the fuels used for cooking, as compared to 55% for the south. It is encouraging, however, to note that access to LPG and natural gas fuels is increasing – at least one in four houses all over India have access to LPG/Natural gas, with the south accounting for over 50% of this parameter. Read together, this portends well for indoor air pollution trends – if there is increasing penetration or at least access to cleaner fuels, TB control may become more effective in the years to come.

12

Chapter 2 Results: General Population

TABLE 2.2: Household characteristics of respondents from the general population interviewed during midline KAP survey, 2013 North TYPE OF HOUSE Pucca Semi-pucca Kutcha Total

%

East

%

West

%

South

%

Total

%

657 302

(59) (27)

454 371

(35) (29)

414 477

(32) (37)

520 477

(46) (43)

2045 1627

(43) (34)

164 1123

(15) (100)

454 1279

(35) (100)

389 1280

(30) (100)

125 1122

(11) (100)

1132 4804

(24)

703 420 1123

(63) (37) (100)

699 580 1279

(55) (45) (100)

780 500 1280

(61) (39) (100)

831 291 1122

(74) (26) (100)

3013 1791 4804

(63) (37)

(38) (31) (9) (14) (4) (2) (2) (0) (100)

120 453 243 207 91 15 78 72 1279

(9) (35) (19) (16) (7) (1) (6) (6) (100)

290 91 369 378 32 6 113 1 1280

(23) (7) (29) (30) (3) (0) (9) (0) (100)

395 31 494 42 17 0 141 2 1122

(35) (3) (44) (4) (2) (0) (13) (0) (100)

1235 921 1212 783 184 43 350 76 4804

(26) (19) (25) (16) (4) (1) (7) (2)

HOUSE OWNERSHIP Yes No Total

SOURCE OF DRINKING WATER Private Tap Private Hand Pump Public Tap Public Hand Pump Tubewell Supply Tanker Well/River/Pond Others Total

430 346 106 156 44 22 18 1 1123

TYPE OF FUEL USED FOR COOKING Wood Dung cakes LPG/natural gas Straw/shrubs/grass Agricultural crop waste Electricity Coal/lignite Kerosene Charcoal Bio-gas

729 272 247 16 79

(65) (24) (22) (1) (7)

688 396 351 254 108

(54) (31) (27) (20) (8)

837 16 372 4 6

(65) (1) (29) (0) (0)

593 21 568 0 2

(53) (2) (51) (0) (0)

2847 705 1538 274 195

(59) (15) (32) (6) (4)

8 2 11 1 11

(1) (0) (1) (0) (1)

12 7 21 6 3

(1) (1) (2) (0) (0)

48 3 11 1 21

(4) (0) (1) (0) (2)

9 1 69 5 72

(1) (0) (6) (0) (6)

77 13 112 13 107

(2) (0) (2) (0) (2)

Household Assets owned by Respondents from the General Population Overall, this data suggests that liberalisation policies have indeed percolated to the level of the general population. For one, overall access to electricity is quite high at all India level, more than 80% of the respondents have access to power (Table 2.3). Similarly, very high penetration of mobile phones all over India (82% average in India) portends well for directly accessing patients. Coupled with decreasing of prices of high-feature phones, this may indicate better, more direct pathways to communicate with individuals all over the country irrespective of socio economic status. Coupled with this, fewer households have Black and White TVs, so the bulk of people have colour TVs. National tendencies tend to be confirmed in terms of distribution of income: 47% of respondents in the east live on less than Rs 4000 per month while more than 66% of respondents in the south live on at least Rs 4000 per month or more. Over half of the respondents have mattresses and pressure cookers; while 40% of those in the north own their own sewing machines.

13


TABLE 2.3: Household assets owned by respondents from the general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HOUSEHOLD ASSETS* Electricity

884

(79)

932

(73)

1199

(94)

1109

(99)

4124

(86)

Mattress

956

(85)

632

(49)

887

(69)

819

(73)

3294

(69)

Pressure cooker

705

(63)

610

(48)

727

(57)

698

(62)

2740

(57)

Chair

818

(73)

902

(71)

962

(75)

1076

(96)

3758

(78)

A cot or bed

1109

(99)

875

(68)

1142

(89)

821

(73)

3947

(82)

A table

681

(61)

645

(50)

655

(51)

901

(80)

2882

(60)

Fan

811

(72)

586

(46)

993

(78)

1049

(93)

3439

(72)

Radio

199

(18)

164

(13)

241

(19)

206

(18)

810

(17)

A black & white television

105

(9)

80

(6)

117

(9)

55

(5)

357

(7)

A colour television

743

(66)

588

(46)

982

(77)

1062

(95)

3375

(70)

A sewing machine

444

(40)

212

(17)

346

(27)

207

(18)

1209

(25)

A mobile telephone

1009

(90)

933

(73)

1090

(85)

920

(82)

3952

(82)

Land line

42

(4)

50

(4)

53

(4)

159

(14)

304

(6)

A computer/laptop

36

(3)

107

(8)

78

(6)

100

(9)

321

(7)

A refrigerator

311

(28)

249

(19)

260

(20)

367

(33)

1187

(25)

A watch or clock

922

(82)

914

(71)

1167

(91)

1035

(92)

4038

(84)

A bicycle

817

(73)

790

(62)

791

(62)

646

(58)

3044

(63)

A motorcycle or scooter

399

(36)

276

(22)

439

(34)

553

(49)

1667

(35)

An animal drawn cart

86

(8)

33

(3)

172

(13)

23

(2)

314

(7)

A car

44

(4)

47

(4)

23

(2)

59

(5)

173

(4)

Water pump

329

(29)

135

(11)

175

(14)

229

(20)

868

(18)

A thresher

34

(3)

12

(1)

8

(1)

2

(0)

56

(1)

A tractor

62

(6)

11

(1)

37

(3)

5

(0)

115

(2)

STANDARD OF LIVING INDEX (SLI) Low SLI

199

(18)

600

(47)

288

(23)

92

(8)

1179

(25)

Medium SLI

390

(35)

327

(26)

508

(40)

450

(40)

1675

(35)

High SLI

534

(48)

352

(28)

484

(38)

580

(52)

1950

(40)

Less than Rs. 2000

141

(13)

187

(15)

233

(18)

125

(11)

686

(14)

Rs 2001 - 4000

430

(38)

414

(32)

400

(31)

235

(21)

1479

(31)

Rs 4001 - 8000

330

(29)

350

(27)

281

(22)

357

(32)

1318

(27)

Rs 8001 - 10000

104

(9)

146

(11)

152

(12)

242

(22)

644

(13)

Rs 10000+

89

(8)

129

(10)

105

(8)

137

(12)

460

(10)

Can't say

29

(3)

53

(4)

109

(9)

26

(2)

217

(5)

1123

(100)

1279

(100)

1280

(100)

1122

(100)

4804

HOUSEHOLD INCOME

Total

*Multiple response question

14


The standard of living index (SLI) is calculated according to National Family Health Survey (NFHS) method. Less than half (42%) of the population fall in high SLI with south zone having the highest and east zone having lowest proportions of people in this group. It is also important to note that east zone has highest proportion of people in low SLI (46%). The findings are consistent with overall economic trends in India; however there is still a large group of people who are in low SLI group whom may need hand holding for their progress.

Knowledge about TB The respondent’s knowledge about TB was elicited by asking questions starting with whether they heard about TB, awareness on symptoms, diagnosis, treatment and cure of TB. The following paragraphs summarise the knowledge of respondents on these aspects.

Heard of TB Most respondents (88%) admitted to have heard of TB either spontaneously or on probing (Table 2.4). The bulk of those who have heard of TB are not significantly differentiated by their origin in either rural (87%) or urban (90%) areas. TABLE 2.4: Characteristics of respondents among general population who heard of TB interviewed during midline KAP survey, 2013 HEARD OF TB Type of settlement Rural Urban SEX Male Female

No 445 148

% (13) (10)

Yes 2915 1296

% (87) (90)

Total 3360 1444

% (100) (100)

265 328

(11) (14)

2143 2068

(89) (86)

2408 2396

(100) (100)

AGE GROUP 18 to 24 years

57

(8)

629

(92)

686

(100)

25 to 34 years

138

(11)

1134

(89)

1272

(100)

35 to 44 Years

170

(14)

1068

(86)

1238

(100)

45 to 54 Years

117

(14)

748

(86)

865

(100)

55+ years

111

(15)

632

(85)

743

(100)

1

(4)

26

(96)

27

(100)

Illiterate

221

(20)

889

(80)

1110

(100)


68

(17)

338

(83)

406

(100)

Less than primary

70

(14)

413

(86)

483

(100)

Primary

109

(11)

883

(89)

992

(100)

Secondary

89

(9)

941

(91)

1030

(100)

Senior Secondary

26

(6)

419

(94)

445

(100)


9

(3)

302

(97)

311

(100)

133

(12)

990

(88)

1123

(100)

EDUCATION Missing

ZONES North East

97

(8)

1182

(92)

1279

(100)

West

150

(12)

1130

(88)

1280

(100)

South

213

(19)

909

(81)

1122

(100)

Total

593

(12)

4211

(88)

4804

15


Over 80% of those surveyed have indeed heard of TB, so this implies that the working population is quite aware of TB. 9% of those with secondary education and 6% of those with senior secondary education were not aware about TB, while responses of about 9% were missing. Awareness about TB is high, with at least 80% of the surveyed population knowing about it independent of region.

Awareness about Symptoms of TB among those who Heard of TB Currently, a key criterion for screening TB is “Cough of 2 weeks or more with or without other symptoms”. On average, most of the general population was aware of “cough of 2 weeks” as a TB symptom (83%) (Table 2.5). This was followed by “coughing up blood” (55%). Respondents from east zone are less aware of “cough of 2 weeks” as a TB symptom (68%). About 11% and 9% of the respondents from east and south zone respectively did not know about any symptoms of TB. Less than 30% of the respondents were less aware that chest pain, weight loss, night sweat, and loss of appetite are also TB symptoms. 19% of the respondents who did not know “cough of 2 weeks” as TB symptom would not seek diagnosis and treatment services until and unless they are made aware of TB symptoms. If the general population is aware of the TB symptoms they can advise their peers, family members having these symptoms to go to a local health centre for TB diagnosis. TABLE 2.5: Awareness about symptoms of TB among the respondents from general population who heard of TB interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SYMPTOMS OF TB A cough of 2 weeks

849

(86)

803

(68)

1018

(90)

751

(83)

3421

(81)

Coughing up blood

589

(59)

729

(62)

610

(54)

383

(42)

2311

(55)

Fever

338

(34)

367

(31)

408

(36)

401

(44)

1514

(36)

Pain in the chest

245

(25)

290

(25)

313

(28)

290

(32)

1138

(27)

Weight loss

211

(21)

210

(18)

253

(22)

401

(44)

1075

(26)

Night sweat

32

(3)

51

(4)

54

(5)

185

(20)

322

(8)

Loss of appetite

185

(19)

156

(13)

144

(13)

194

(21)

679

(16)

Don't know

31

(3)

134

(11)

38

(3)

79

(9)

282

(7)

Total Respondents

990

1182

1130

909

4211

Awareness about Mode of Transmission of TB among those who Heard of TB The level of awareness on the mode of transmission among the general population is crucial to prevent TB transmission to family members and the community. 71% of the respondents were aware of the mode of TB transmission through air. This awareness was more than 65% across all zones (Table 2.6). More than 40% of the respondents in north, east and west zones thought that sharing food with a person with TB can transmit TB. One fifth also responded that TB is transmitted through sharing bed or clothes used by TB patients. This misconception would contribute to increase the stigma and discrimination towards TB patients. 14% of the respondents did not know the mode of transmission of TB at all.

16


TABLE 2.6: Awareness about mode of TB transmission among the respondents from general population who heard of TB interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

MODE OF TB TRANSMISSION Through the air when the infected person coughs or sneezes

742

(75)

778

(66)

845

(75)

608

(67)

2973

(71)

Through sharing food with a person with TB

461

(47)

490

(41)

460

(41)

157

(17)

1568

(37)

By sharing bed/clothes with a person with TB

290

(29)

147

(12)

327

(29)

111

(12)

875

(21)

Through handshake with a person with TB

80

(8)

134

(11)

87

(8)

93

(10)

394

(9)

Don't know/Not aware

88

(9)

239

(20)

119

(11)

134

(15)

580

(14)

Total Respondents

990

1182

1130

909

4211

Inadequate knowledge or false belief and misconceptions about the mode of transmission may increase social stigma and discrimination of TB patients. This can be reduced by spreading knowledge about the mode of transmission of TB. Adequate knowledge on transmission will also help the general population to practice TB infection control and put in place prevention practices in houses where there are TB patients. There is a possibility that higher levels of awareness on the mode of transmission will eventually decrease TB transmission to the family members and the community.

Knowledge on the People who are more Prone to TB On average, 50% of respondents gave an opinion that smokers and people ‘exposed to cough and cold for long time’ are prone to TB (Table 2.7). 69% of the respondents from south zone knew the association between smoking and TB. There remain almost one third of the respondents in the south zone who can be made aware that smokers are prone to TB which will also help indirectly to control tobacco use. Only 24% of the respondents gave the opinion that alcoholics are also prone to TB which is same across all zones. There is an acute need to increase the knowledge among the general population that alcoholics are prone to developing TB and also affect the treatment outcomes negatively. The respondents from all zones seemed to have lesser awareness that malnutrition, children, women and HIV positives are more prone to TB. The dual epidemics of HIV and TB are ruining the efforts made by HIV and TB control programmes as TB is one of the common opportunistic infections among HIV positives. This knowledge seemed very less (≤5%) among the general population across all zones. One tenth of the general population also did not know who actually is prone to TB. The general population needs to be aware of the risk factors for TB or else the risk factors like, HIV infection; smoking and alcohol intake will not adversely affect the efforts of RNTCP in reducing TB prevalence, incidence and mortality.

17


TABLE 2.7: Opinion of respondents from general population who heard of TB on “people who are prone to TB in the community” interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

WHO ARE PRONE TO TB? Smokers

455

(46)

513

(43)

480

(42)

623

(69)

2071

(49)

Those living in unhygienic condition

417

(42)

466

(39)

404

(36)

235

(26)

1522

(36)

Alcoholics

195

(20)

255

(22)

256

(23)

290

(32)

996

(24)

Exposed to cough and cold for long time

668

(67)

349

(30)

664

(59)

298

(33)

1979

(47)

Poor people

142

(14)

106

(9)

139

(12)

41

(5)

428

(10)

Malnourished

146

(15)

258

(22)

251

(22)

102

(11)

757

(18)

Children

38

(4)

24

(2)

106

(9)

84

(9)

252

(6)

Women

52

(5)

15

(1)

86

(8)

97

(11)

250

(6)

HIV positive persons

48

(5)

63

(5)

37

(3)

59

(6)

207

(5)

Don't know

46

(5)

216

(18)

61

(5)

112

(12)

435

(10)

Total Respondents

990

1182

1130

909

4211

Awareness about Mode of Diagnosis of TB among those who Heard of TB On an average, 66% and 54% of the respondents knew that TB is diagnosed by ‘sputum smear test’ and ‘X-ray’ respectively (Table 2.8). Strikingly, 52% of the respondents also responded to ‘blood test’ for diagnosis of TB which confirms that blood tests are widely used for diagnosing TB. This may imply that the serological tests (although this was not specifically asked) which have been banned by RNTCP are still being prescribed. The level of awareness among the general population seemed relatively lower on the appropriate diagnostic tool for TB. One tenth of the general population also do not know how TB is diagnosed. Very few respondents (5%) thought that TB could be diagnosed by a skin test and most of these (65%) were from the south zone. TABLE 2.8: Awareness about mode of TB diagnosis among respondents from general population who heard of TB interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

DIAGNOSIS OF TB Sputum smear test

609

(62)

769

(65)

825

(73)

561

(62)

2764

(66)

X-Ray

685

(69)

498

(42)

611

(54)

487

(54)

2281

(54)

Skin test

15

(2)

36

(3)

24

(2)

134

(15)

209

(5)

Blood test

498

(50)

664

(56)

579

(51)

458

(50)

2199

(52)

Other

20

(2)

13

(1)

18

(2)

8

(1)

59

(1)

Don't know

76

(8)

210

(18)

126

(11)

150

(17)

562

(13)

Total Respondents

990

1182

1130

18

909

4211


Sputum smear test is widely used for diagnosis of TB across 13,000 DMCs across the country for diagnosis of TB and there is still a significant proportion of the general population (34%) who need to be made aware on this. 52% of the respondents are not aware that ‘Blood test’ is not a reliable test for TB diagnosis. Increasing public awareness on correct test for diagnosis of TB will help respondents to ask for ‘sputum smear test’.

Knowledge on Seriousness of TB Disease and its Curability The majority of those who heard of TB consider TB a serious disease (70%) and curable (83%), with lowest proportions in the south (Table 2.9). This also means that 30% of them do not consider TB as a serious disease. And 17% of them do not know TB is completely curable. Individuals with lack of knowledge on seriousness of the disease and its curability may not take the symptoms such as a cough of over 2 weeks seriously thus delaying medical care and those who do not know about the curability may restrict themselves from accessing treatment. They may fear stigma and discrimination and consider their condition as not treatable. Although we cannot rule out that even people who know the seriousness and curability of TB may still delay seeking medical care due to reasons of fear of stigma and discrimination. TABLE 2.9: Knowledge about seriousness of TB disease and its curability among respondents from general population who heard of TB interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

884

(89)

872

(74)

836

(74)

337

(37)

2929

(70)

Yes, completely

876

(88)

986

(83)

974

(86)

669

(74)

3505

(83)

Yes, partially

95

(10)

119

(10)

117

(10)

119

(13)

450

(11)

No

6

(1)

21

(2)

10

(1)

14

(2)

51

(1)

Don't know

13

(1)

56

(5)

29

(3)

107

(12)

205

(5)

Total

990

(100)

1182

(100)

1130

(100)

909

(100)

4211

IS TB A SERIOUS DISEASE ? Yes, serious life threatening disease CAN TB BE CURED ?

Awareness about the Best Treatment for TB among those who Heard of TB 74% of respondents know that TB treatment is through allopathic drugs (DOTS or TB drugs or other allopathic drugs) with highest in north zone (80%) and lowest in south zone (69%) (Table 2.10). Though south has greater literacy and better functioning health programmes, this observation is quite an anomaly. When asked specifically about ‘DOTS’ only 44% knew DOTS as treatment for TB. About 11% of general population consider alternative medicines like ayurveda or homeopathy or others as the best treatment and nearly one fifth of the population (16%) did not know what the best treatment is. Knowledge on TB treatment seems reasonably good with a lot of space to improve. Zonal variations suggest contextualisation of knowledge dissemination programmes to reach different groups of people in each zone.

19


TABLE 2.10: Awareness about the best treatment for TB and the duration of TB treatment among respondents from general population who heard of TB interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

TREATMENT OF TB Allopathic medicines

306

(31)

461

(39)

155

(14)

351

(39)

1273

(30)

DOTS

481

(49)

407

(34)

679

(60)

270

(30)

1837

(44)

Herbal remedies

5

(1)

7

(1)

21

(2)

71

(8)

104

(2)

Home remedies

10

(1)

6

(1)

14

(1)

53

(6)

83

(2)

Ayurvedic

67

(7)

26

(2)

17

(2)

7

(1)

117

(3)

Homeopathy

12

(1)

24

(2)

25

(2)

9

(1)

70

(2)

Other

13

(1)

16

(1)

26

(2)

12

(1)

67

(2)

Don't know

96

(10)

235

(20)

193

(17)

136

(15)

660

(16)

DURATION OF TB TREATMENT 4 weeks or less

16

(2)

23

(2)

24

(2)

34

(4)

97

(2)

1-5 months

78

(8)

108

(9)

77

(7)

95

(10)

358

(9)

6-8 months

444

(45)

525

(44)

654

(58)

405

(45)

2028

(48)

More than 8 months

223

(23)

189

(16)

216

(19)

149

(16)

777

(18)

Don’t Know

229

(23)

337

(29)

159

(14)

226

(25)

951

(23)

Total

990

(100)

1182

(100)

1130

(100)

909

(100)

4211

Less than half (48%) of the general population who heard of TB know the correct duration of TB treatment (6-8 months) and one fifth of the populations said they do not know the treatment duration. In TB treatment duration is considerably long and faces the challenge of adherence. Non-adherence to treatment is the key reason for drug resistance in TB patients. Hence the findings are quite alarming that not even half the population know about the correct duration of treatment. This gap needs to be plugged in to ensure treatment adherence.

Heard of ‘DOTS’ and Free Treatment for TB among those who Heard of TB Only 23% of those who had heard of TB had heard of DOTS with least in south zone (12%) (Table 2.11). Of this, 88% know that it is free treatment for TB. ‘DOTS’ is the treatment strategy for TB in India, however majority of general population in India were not aware of DOTS. This lack of awareness on ‘DOTS’ must be urgently considered

Knowledge about Self-susceptibility to develop TB Disease among the General Population Though 31% of the general population believe that they can get TB, 46% of them believe that they cannot get TB (Table 2.12). When asked for reasons for their belief, a majority said that they are strong and healthy and generally do not fall sick easily. The fact that anyone can get TB and that it depends on the individual’s health should be actively disseminated across all age groups. It is also noticeable that more than one tenth (11%) did not know whether they can get TB or not.

20


TABLE 2.11: Proportion of respondents who heard of the term ‘DOTS’ and free treatment for TB among the general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HEARD OF DOTS Yes

222

(20)

320

(25)

413

(32)

139

(12)

1094

(23)

No

770

(69)

867

(68)

720

(56)

819

(73)

3176

(66)

Don't know

131

(12)

92

(7)

147

(11)

164

(15)

534

(11)

HEARD OF FREE TREATMENT Yes

201

(91)

272

(85)

368

(89)

120

(86)

961

(88)

No

11

(5)

27

(8)

27

(7)

6

(4)

71

(6)

Don't know

10

(5)

21

(7)

18

(4)

13

(9)

62

(6)

Total

222

(100)

320

(100)

413

(100)

139

(100)

1094

TABLE 2.12: Perception of self-susceptibility to develop TB disease among the general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

CAN YOU GET TB ? Yes

420

(37)

553

(43)

428

(33)

110

(10)

1511

(31)

No

473

(42)

446

(35)

565

(44)

740

(66)

2224

(46)

Don’t know/Can’t Say

99

(9)

188

(15)

140

(11)

108

(10)

535

(11)

Other

131

(12)

92

(7)

147

(11)

164

(15)

534

(11)

Total

1123

(100)

1279

(100)

1280

(100)

1122

(100)

4804

Attitudes or Perceptions about TB Disease and TB Patients The attitudes/perceptions of the general population with regard to TB and TB patients were gathered by asking for agreement or disagreement on a particular statement or their response to a multiple choice question. The responses are quantitative and not qualitative hence the reasons for the response are not known. Various statements were presented to the survey respondents to elicit their overall attitudes towards TB or TB patients. On the whole, most indicators suggest healthy attitudes towards TB patients and their families.

Acceptance in the Communities Nearly half (46%) feel that in their communities, people are friendly with TB patients but generally avoid them (Table 2.13). A quarter (25%) say that people in their communities mostly reject TB patients. From these two findings, there seems a significant level of apathy towards TB patients in the community. However, 41% of the respondents also said that in their communities mostly people help and support TB patients. Regarding the female TB patient’s situation, there is a considerable progress in care taking and non-discrimination by husband or in-laws. Only about one tenth of people feel that female TB patients face problems in marriage.

21


These findings suggest that acceptance is more at family level than at community level. This also suggests that specific interventions to increase acceptance at community level needs to be implemented. And community should be involved in planning and designing these specific interventions. TABLE 2.13: Attitudes towards TB disease, who are prone to TB and how TB patients are treated in their communities among respondents from general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

874

(68)

838

(65)

350

(31)

2948

(61)

DO YOU CONSIDER TB AS A SERIOUS DISEASE? TB is a serious disease

886

(79)

WHO DO YOU THINK ARE MORE PRONE TO GET TB? Those living in unhygienic condition

417

(37)

467

(37)

404

(32)

247

(22)

1535

(32)

Poor people

142

(13)

106

(8)

139

(11)

43

(4)

430

(9)

Malnourished

147

(13)

258

(20)

251

(20)

121

(11)

777

(16)

Children

38

(3)

24

(2)

106

(8)

85

(8)

253

(5)

Women

52

(5)

15

(1)

86

(7)

99

(9)

252

(5)

Family members of TB person

432

(38)

179

(14)

444

(35)

262

(23)

1317

(27)


668

(59)

349

(27)

665

(52)

309

(28)

1991

(41)

HIV +ve

48

(4)

63

(5)

37

(3)

60

(5)

208

(4)

Smokers

455

(41)

514

(40)

480

(38)

652

(58)

2101

(44)

Alcoholics

195

(17)

255

(20)

257

(20)

309

(28)

1016

(21)

IN YOUR COMMUNITY HOW ARE TB PATIENTS TREATED Most people reject him/ her

219

(20)

227

(18)

359

(28)

405

(36)

1210

(25)

Most people are friendly but generally avoid them

672

(60)

373

(29)

683

(53)

488

(43)

2216

(46)

Community mostly helps and support him/her

523

(47)

575

(45)

466

(36)

412

(37)

1976

(41)

Husbands/in-laws do not accompany female patients to hospital/ DOTS centres

15

(1)

51

(4)

44

(3)

163

(15)

273

(6)

Female accompany their spouse to hospitals suffering from TB to hospital/DOTS centres

59

(5)

119

(9)

75

(6)

209

(19)

462

(10)

Females suffering from TB face problem in marriage

147

(13)

161

(13)

95

(7)

182

(16)

585

(12)

No change in the reaction

71

(6)

304

(24)

102

(8)

52

(5)

529

(11)

53

(5)

180

(14)

125

(10)

75

(7)

433

(9)

Don't know Total Respondents

1123

1279

1280

22

1122

4804


Fear and Threat Feelings A particularly disturbing fact across India is indicated with response to the statement, “TB patients are a threat to the community” – high proportions of the respondents in the north (64%), 41% of those in the east, and 50% of those in the west “somewhat agreed” or “strongly” agreed with this statement (Table 2.14). Even in the south, 35% of respondents agreed. Feelings of threat are usually developed by subconscious fear, though people may not agree to it up front. The fear of infection in general public may affect TB patients in the communities adversely in the form of apathy, stigma and discrimination. TABLE 2.14: Attitudes towards TB patients and their families from general population interviewed during midline KAP survey, 2013* North

%

East

%

West

%

South

%

Total

%

A FAMILY WITH TB PATIENT SHOULD NOT BE ALLOWED TO PARTICIPATE IN ANY SOCIAL FUNCTION Strongly agree

138

(12)

186

(15)

102

(8)

122

(11)

548

(11)

Somewhat agree

186

(17)

188

(15)

197

(15)

173

(15)

744

(15)

Disagree

755

(67)

826

(65)

945

(74)

810

(72)

3336

(69)

MARRIED FEMALE TB PATIENT SHOULD BE SENT OFF TO HER PARENTS HOUSE Strongly agree

93

(8)

67

(5)

54

(4)

70

(6)

284

(6)

Somewhat agree

135

(12)

122

(10)

178

(14)

172

(15)

607

(13)

Disagree

866

(77)

1031

(81)

1033

(81)

864

(77)

3794

(79)

CHILDREN WITH TB SHOULD NOT BE ALLOWED TO GO TO SCHOOL Strongly agree

173

(15)

153

(12)

134

(10)

117

(10)

577

(12)

Somewhat agree

217

(19)

233

(18)

398

(31)

170

(15)

1018

(21)

Disagree

693

(62)

797

(62)

708

(55)

820

(73)

3018

(63)

CHILDREN OF PARENTS SUFFERING FROM TB SHOULD NOT BE ALLOWED TO GO TO SCHOOL Strongly agree

96

(9)

102

(8)

79

(6)

94

(8)

371

(8)

Somewhat agree

186

(17)

190

(15)

252

(20)

183

(16)

811

(17)

Disagree

802

(71)

879

(69)

906

(71)

825

(74)

3412

(71)

TB PATIENTS ARE THREAT TO COMMUNITY Strongly agree

425

(38)

215

(17)

268

(21)

176

(16)

1084

(23)

Somewhat agree

296

(26)

309

(24)

366

(29)

215

(19)

1186

(25)

Disagree

334

(30)

647

(51)

585

(46)

689

(61)

2255

(47)

TB PATIENTS SHOULD BE LEFT ISOLATED Strongly agree

149

(13)

86

(7)

71

(6)

92

(8)

398

(8)

Somewhat agree

263

(23)

252

(20)

266

(21)

195

(17)

976

(20)

Disagree

658

(59)

848

(66)

901

(70)

811

(72)

3218

(67)

DAILY WAGE LABOURER, SUFFERING FROM TB SHOULD NOT BE ALLOWED TO WORK Strongly agree

216

(19)

165

(13)

182

(14)

160

(14)

723

(15)

Somewhat agree

291

(26)

245

(19)

365

(29)

172

(15)

1073

(22)

Disagree

552

(49)

761

(59)

678

(53)

772

(69)

2763

(58)

Total

1123

(100)

1279

(100) 1280

(100) 1122

(100)

4804

*Percentages do not add upto 100, as missing or not recorded values are not included in the table

23


About one third of the respondents agree that TB patient’s children or children with TB should not be allowed to attend school, TB patients should be isolated and daily wage labourers should not be allowed to work. These attitudes yield negative and depressing feelings in individuals with TB and send a wrong message to those who observe these things happening in practice. These attitudes also perpetuate and sustain stigma and discrimination towards TB patients in the communities. The root cause of these attitudes needs to be identified and eliminated permanently if we want to see a TB free India.

Practices related to/towards TB or TB Patients Discriminatory Practices towards TB Patients

A majority of the general population (76%) responded that they would not share a meal with TB patients (Table 2.15). Most of them will take a female member in the family with TB like symptoms to the hospital (92%). Majority of the general population (79%) would not get their sons or daughters married to person who they knew had TB. There is no gender difference in this response. However, if a family member is known to have TB they will not isolate him or her nor will they send their daughter-in- law affected by TB to her parent’s house. Stigma and discrimination towards TB patients persists amongst members of the general population. The practice of sharing a meal is considered hospitable in India. It affirms and builds the relationship between the individuals who practice it. However, if one knows that the other person has TB, it is TABLE 2.15: Possible practices towards TB patients by respondents from general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SHARE A MEAL WITH PERSON YOU KNOW HAD TB Yes

128

(11)

255

(20)

121

(9)

215

(19)

719

(15)

No

976

(87)

945

(74)

1136

(89)

606

(54)

3663

(76)

IF YOU SUSPECT ONE OF THE FEMALE MEMBER OF YOUR FAMILY IS SUFFERING FROM TB, WOULD YOU TAKE HER TO HOSPITAL Yes

1034

(92)

1180

(92)

1218

(95)

987

(88)

4419

(92)

No

77

(7)

57

(4)

54

(4)

86

(8)

274

(6)

MARRY YOUR DAUGHTER TO A BOY KNOWING HE HAD TB Yes

53

(5)

191

(15)

60

(5)

153

(14)

457

(10)

No

1047

(93)

942

(74)

1165

(91)

640

(57)

3794

(79)

ISOLATE YOUR FAMILY MEMBER HAVING TB IN THE HOUSE Yes

394

(35)

209

(16)

406

(32)

156

(14)

1165

(24)

No

676

(60)

1007

(79)

845

(66)

676

(60)

3204

(67)

MARRY YOUR SON TO A GIRL WHO YOU KNOW HAD TB Yes

60

(5)

191

(15)

64

(5)

153

(14)

468

(10)

No

1028

(92)

938

(73)

1158

(90)

654

(58)

3778

(79)

SEND YOUR DAUGHTER IN LAW TO PARENTS HOUSE IF SHE HAD TB IN ORDER TO PROTECT OTHER FAMILY MEMBERS FROM TB Yes

149

(13)

88

(7)

149

(12)

360

(32)

746

(16)

No

931

(83)

1114

(87)

1107

(86)

597

(53)

3749

(78)

Total

1123

(100)

1279

(100)

1280

(100)

1122

(100)

4804

Percentages do not add upto 100, as missing or not recorded values are not included in the table 24


quite possible that they will not share a meal with that person. This has been the case for many years now. It is a discriminatory practice which is not being addressed in any way. Similarly, the practice of not marrying one’s children with a person who had TB is discriminatory These practices force TB patients to keep their status a secret, lest they be discriminated, rejected or not-valued due to their health condition. This practice can be prevented if only people knew that TB is completely curable and is not transmitted sexually or genetically. These findings also show the current dissemination of correct knowledge about TB is insufficient. Immediate measures need to be taken to break the prevailing myths about TB, its transmission and curability.

Media Practices among the Respondents Existing and Preferred Source of TB Related Information

With regard to the efficacy of various sources of TB-related information: Health camps do not seem to be really effective, especially in the western region (only 6% of respondents prefer TB-related information while 59% of those in the west do rely on hospitals and doctors) (Table 2.16). But if combined as a source of information with hospitals and doctors and local health workers, the medical profession as a whole can be harnessed as a well-trusted source of TBrelated information. Television (TV) is a widely preferred source of information on an all-India basis (61%, with high reliance on TV in the south (81%) and the west (69%). Except for respondents TABLE 2.16: Existing and preferred source of TB related information of the respondents among the general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

EXISTING SOURCE OF TB RELATED INFORMATION* Television

545

(49)

497

(39)

841

(66)

814

(73)

2697

(56)

Hospital/Doctor

568

(51)

309

(24)

687

(54)

491

(44)

2055

(43)

Friends/Relatives

462

(41)

569

(44)

439

(34)

210

(19)

1680

(35)

Health & related workers

253

(23)

244

(19)

383

(30)

239

(21)

1119

(23)

Newspaper/Magazine

269

(24)

255

(20)

303

(24)

353

(31)

1180

(25)

Hoardings/Posters etc

100

(9)

204

(16)

113

(9)

133

(12)

550

(11)

Radio

135

(12)

112

(9)

153

(12)

184

(16)

584

(12)

PREFERRED SOURCE OF TB RELATED INFORMATION* Hospital/Doctors

827

(74)

514

(40)

752

(59)

472

(42)

2565

(53)

Television

611

(54)

540

(42)

877

(69)

914

(81)

2942

(61)

Newspaper/Magazine

228

(20)

245

(19)

321

(25)

382

(34)

1176

(24)

Hoardings/Posters etc

99

(9)

146

(11)

164

(13)

170

(15)

579

(12)

Local health workers

237

(21)

433

(34)

396

(31)

234

(21)

1300

(27)

Health camps

139

(12)

176

(14)

80

(6)

333

(30)

728

(15)

Friends & relatives

373

(33)

504

(39)

345

(27)

186

(17)

1408

(29)

Teachers

92

(8)

46

(4)

26

(2)

44

(4)

208

(4)

1123

(100)

1279

(100)

1280

(100)

1122

(100)

4804

Total

25


in the south (only 17% prefer TB-related information from friends and relatives); word-of-mouth sources of information are respected. It is curious that there is a fairly low level of preference vis a vis hospitals and doctors as source of TB related information in the south and the east (42% and 40%), respectively, compared with higher preference for doctors and hospitals in the north (74%) and west (59%) (Table 2.13). Only 7% of the respondents said that some one visited their locality or community to talk about TB. Of these individuals, only 293 knew who had visited (Table 2.17). 83% of these mentioned a health worker visiting. Mostly the information provided includes prevention, cure and treatment of TB. Areas like myths or misconceptions around TB are not addressed generally. TABLE 2.17: Respondents reply to ‘visit’ by any individual to provide information regarding TB and the information shared by those who visited North

%

East

%

West

%

South

%

Total

%

56

(5)

316

(6)

DID ANYBODY VISIT YOUR LOCALITY TO DISCUSS TB RELATED INFORMATION? Yes

31

(3)

58

(5)

171

(13)

No

1035

(92)

1167

(91)

1076

(84)

889

(79)

4167

(87)

57

(5)

54

(4)

33

(3)

177

(16)

321

(7)

Don't know Total

1123

(100) 1279

(100) 1280

(100) 1122

(100)

4804

IF YES, WHO VISITED? AWW/ASHA/HW/ANM

21

(75)

41

(85)

156

(96)

28

(52)

246

(84)

Government doctor

3

(11)

4

(8)

4

(2)

25

(46)

36

(12) (4)

Private doctor

4

(14)

3

(6)

3

(2)

1

(2)

11

Total

28

(100)

48

(100)

163

(100)

54

(100)

293

TYPE OF INFORMATION PROVIDED Symptoms of TB

2

(6)

5

(9)

4

(2)

3

(6)

14

(4)

Prevention from TB

8

(26)

8

(14)

30

(18)

21

(40)

67

(21)

Cure for TB

5

(16)

13

(22)

54

(32)

12

(23)

84

(27)

DOTS

7

(23)

6

(10)

10

(6)

3

(6)

26

(8)

Place of treatment

4

(13)

26

(45)

54

(32)

14

(26)

98

(31)

Information on prevailing myths about TB patients

5

(16)

0

(0)

18

(11)

0

(0)

23

(7)

Total

31

(100)

58

(100)

170

(100)

53

(100)

312

Summary of Key Indicators of Knowledge about TB Low DOTS awareness (26%) at the all-India level suggests that greater efforts could be coupled with sharing information publicly that it is already free (only 23% of respondents know). This would increase the reach and the effectiveness of this clearly important national programme. There is very high awareness in the west about the fact that DOTS treatment is free (33%) as compared to the south, where only 5% know the same. There is generally high awareness at all-India level that a cough of over 2 weeks is a key symptom of TB (81%). There is a significant lack in the awareness on the treatment duration which also needs special advocacy measures.

26


TABLE 2.18: Summary of key indicators of knowledge about TB among respondents who heard of TB from general population interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

Heard of TB

990

(88)

1182

(92)

1130

(88)

909

(81)

4211

(88)

Know that cough of over 2 weeks is a key symptom for TB

849

(86)

803

(68)

1018

(90)

751

(83)

3421

(81)

Know that TB is caused by bacteria/germ transmits through air

742

(75)

778

(66)

845

(75)

608

(67)

2973

(71)

Know that TB can be diagnosed by sputum test

609

(62)

769

(65)

825

(73)

561

(62)

2764

(66)

Know that TB is curable

876

(88)

986

(83)

974

(86)

669

(74)

3505

(83)

Know that the duration of TB treatment is 6-8 months

444

(45)

525

(44)

654

(58)

405

(45)

2028

(48)

Heard of DOTS

222

(22)

320

(27)

413

(37)

132

(15)

1087

(26)

Know that TB treatment is free under DOTS

201

(20)

272

(23)

368

(33)

116

(13)

957

(23)

Total Respondents

990

1182

1130

27

909

4211

Summary Results: General Population Demographic Profile

• 54% in the age group between 26-45 years • One third (31%) of the respondents are either illiterate or

• 65,209 households line listed, 3,14,913 population covered

have no formal education

& 4,804 interviewed

• Over one-third (39%) of all respondents are wage-labourers

• Respondents from rural areas 3,360; from tribal areas 639

and cultivators

74

South West East

58

62

62 65

67

73

75

75 66

68

80

60

Heard of DOTS


Know that TB is curable

Know that TB can be diagnosed by sputum test

Know that TB is caused by bacteria/germ transmits through air

Heard of TB

0

Know that cough of over 2 weeks is a key symptom for TB 86

23 13

20

Know that TB treatment is free under DOTS 20

15

22

23

27

40

33

37

45

North 45 44

Percentage

88 83 86

90 83 81

81

100

88 92 88

Knowledge about TB

Key knowledge indicators • • • • •

88% of the respondents heard of TB 81% of the respondents knew “cough of over 2 weeks” as key symptom for TB 71% of the respondents knew that mode of TB transmission is through air Only about half (48%) knew the correct duration of TB treatment (6-8 months) Only 23% of the respondents heard of DOTS

Attitudes towards TB disease and TB patients 100

Percentage

80

79 68

65

61

60 40

31

20 0

North

East

West

South

Consider TB as a serious disease

Total

Attitudes of respondents towards TB disease • 70% consider TB a serious disease • 83% consider TB curable • 17% of them do not know that TB is completely curable • 31% perceive that they can get TB

South

Knowledge about the people who are prone to TB

58

West

52

East

59

North

60

• About 50% opined that smokers and people ‘exposed to cough and cold for long time’ are prone to TB • Only 24% gave the opinion that alcoholics are also prone to TB • Less than 10% were aware that malnourished, children, women and HIV positives are more prone to TB

38 35

37 37

28

27 23 Malnourished

17 3

5

4 5

8

Poor people

3

4 People living in unhygienic conditions

Women & Children



HIV +ve

Alcholics

South

36 37 29

36

24

28

36

West

47 45

43

48

East

North

53

60

19

10 5

7

8 5

6

7

6

5

1

4 3

9

12

14

13 13

15

16

24

20 18

Percentage

Smokers

60

0

14

15 17 11

13

11

8

12

20 20

20 20

22 13

24

28

32

Percentage

36

41 40 38

48

0

Most people Most people Community Husbands/inFemale Females No change Don't know reject him/her are friendly mostly helps laws do not accompany suffering from in the reaction but generally and support accompany their spouce TB face avoid them him/her female patients to hospitals problem in to hospital/ suffering from marriage DOTS centres TB to hospital /DOTS centres

Opinion on how TB patients are treated in the community • Nearly half (46%) feel that people are friendly with TB patients but generally avoid them • A quarter of them (25%) say that people in their communities mostly reject TB patients • 41% said that in their communities mostly people help and support TB patients • Only about one tenth of people feel that female TB patients face problems in marriage

Practices of respondents towards TB patients

88

95

92

100

92

Practices towards TB patients & TB Disease

North

East

West

South

Share a meal Taking female TB Marry your daughter Isolate your family with person you suspect of the to a boy knowing member having TB know had TB family to the hospital he had TB in the house

12 7

5

5

13

14

15

14

16

5

5

0

14

15

19 9

11

20

32

35

40

32

60

20

Percentage

80

Marry your son to a girl who you know had TB

Send your daughter in law to parent's house if she had TB in order to protect other family members from TB

• A large majority (76%) said that they would not share a meal with TB patients • Most of them will take a female member in the family suffering from TB like symptoms to the hospital (92%) • 79% would not get their sons or daughters married to a person who they knew had TB

Conclusion • Low DOTS awareness (23%) at the all-India level suggests that greater efforts could be coupled with sharing information publicly that it is already free • There is generally high awareness across the country that a cough of over 2 weeks is a key symptom of TB (81%) • There is a significant lack in the awareness on the treatment duration which needs special advocacy measures.

CHAPTER

3 Results: TB Patients

A total of 631 TB patients were identified during the household listing process. However, 135 (21%) could not be interviewed due to non-availability of patients during the time of home visits and/or unwillingness to participate in the survey. Hence, total study population is 496.

Demographic Profile The data here presents a clear and explicitly survey-specific picture of the average TB patients identified and interviewed for the KAP survey. The distribution of TB patients across the states surveyed is equivalent to India’s rural: urban ratio (3:1), this was taken to be representative of the country. The distribution is also limited by the population proportionate random sampling of number of districts from different zones and states.

Geography The state with highest number of TB patients in our survey is Bihar (N=105) followed by Madhya Pradesh (N=77) and Kerala (N=57) (Table 3.1). Based on the type of their settlements, TB appears to be an overwhelmingly rural disease. The two states where this is the exception is Mizoram (75% urban) and Maharashtra (100% urban). In four states (Haryana, Chhattisgarh, Andhra Pradesh and Bihar) over 90% of TB patients are in rural areas.

Gender and Age Most TB patients are male (61%). 40% of the TB patients are between 26 and 45, while 43% of the patients are aged above 43. In the south zone 57% are above 46 years. Together, this accounts for TABLE 3.1: Distribution of TB patients identified from the household line-listing process during midline KAP survey, 2013 Rural

%

Urban

%

Total

%

Andhra Pradesh

10

(3)

0

(0)

10

(2)

Bihar

96

(26)

9

(7)

105

(21)

Chhattisgarh

7

(2)

0

(0)

7

(1)

Haryana

53

(14)

0

(0)

53

(11)

Karnataka

11

(3)

1

(1)

12

(2)

Kerala

43

(12)

14

(11)

57

(11)

Maharashtra

0

(0)

12

(9)

12

(2)

Mizoram

7

(2)

21

(17)

28

(6)

Orissa

13

(4)

9

(7)

22

(4)

Punjab

6

(2)

2

(2)

8

(2)

Rajasthan

3

(1)

1

(1)

4

(1)

Tamil Nadu

18

(5)

9

(7)

27

(5)

Uttar Pradesh

38

(10)

12

(9)

50

(10)

West Bengal

16

(4)

8

(6)

24

(5)

Madhya Pradesh

48

(13)

29

(23)

77

(16)

Total

369

(100)

127

(100)

496

30

Chapter 3 Results: TB Patients

nearly 83% of the working population –which clearly portends poorly at the aggregate, all-India level (Table 3.2). TABLE 3.2: Socio-demographic characteristics of the TB patients identified and interviewed in the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SEX Male

69

(62)

102

(57)

65

(65)

66

(62)

302

(61)

Female

42

(38)

77

(43)

35

(35)

40

(38)

194

(39)

AGE GROUP* 18-25 yrs

15

(14)

24

(13)

17

(17)

5

(5)

61

(12)

26-35yrs

24

(22)

40

(22)

18

(18)

15

(14)

97

(20)

36-45yrs

24

(22)

32

(18)

19

(19)

24

(23)

99

(20)

46+

45

(41)

69

(39)

40

(40)

60

(57)

214

(43)

Illiterate

43

(39)

80

(45)

29

(29)

15

(14)

167

(34)


14

(13)

7

(4)

17

(17)

14

(13)

52

(10)

Less than primary

11

(10)

23

(13)

16

(16)

15

(14)

65

(13)

Primary

20

(18)

43

(24)

10

(10)

24

(23)

97

(20)

Secondary

15

(14)

18

(10)

18

(18)

29

(27)

80

(16)

Senior secondary

5

(5)

6

(3)

8

(8)

3

(3)

22

(4)


3

(3)

1

(1)

2

(2)

2

(2)

8

(2)

Married

87

(78)

123

(69)

79

(79)

91

(86)

380

(77)

Unmarried

15

(14)

34

(19)

11

(11)

7

(7)

67

(14)

Widowed

9

(8)

18

(10)

8

(8)

6

(6)

41

(8)

Not applicable

0

(0)

4

(2)

2

(2)

2

(2)

8

(2)

Wage labour

22

(20)

42

(23)

25

(25)

32

(30)

121

(24)

Skilled labour

4

(4)

2

(1)

4

(4)

12

(11)

22

(4)

Self employed

7

(6)

2

(1)

9

(9)

3

(3)

21

(4)

Service (govt. and private)

1

(1)

7

(4)

1

(1)

5

(5)

14

(3)

Business

4

(4)

3

(2)

1

(1)

6

(6)

14

(3)

Agriculture/Cultivator

25

(23)

20

(11)

20

(20)

5

(5)

70

(14)

Unemployed

13

(12)

24

(13)

14

(14)

14

(13)

65

(13)

Housewife

30

(27)

55

(31)

19

(19)

24

(23)

128

(26)

Student

4

(4)

15

(8)

7

(7)

3

(3)

29

(6) (2)

EDUCATION*

MARITAL STATUS**

OCCUPATION

Other

1

(1)

6

(3)

0

(0)

1

(1)

8

Total

111

(100)

179

(100)

100

(100)

106

(100)

496

* Percentages do not add up to 100 as other groups like missing/not recorded are not included in the table ** Percentages exceed 100, due to rounding up to zero decimals

31


Education and Marital Status In terms of educational profile, the low socio-economic status is clear: 44% of the identified TB patients are illiterate or have no formal education, nearly 55% had some schooling (primary, secondary or senior-secondary education). The majority of them are married (77%) In this survey, 26% of the identified TB patients are housewives. This may be attributed to indoor air pollution (smoke from firewood or other harmful cooking fuels and second-hand smoking) especially in rural settings. Infection control measures need to be strengthened within the families and members should be encouraged to be proactive health seekers.

Occupation In terms of economic or sectoral origin, more than half of the TB patients are either daily wage labourers or agriculture workers (51%). There are significant zonal variations in occupation. For example, the proportion of daily wage laborers is highest in the south (30%) whereas agriculture workers or cultivators are the least in the south zone. South zone also has a larger number of TB patients who are skilled workers. This distribution is more homogenous in other zones. It is noticeable that around 13% of TB patients are unemployed which is almost uniform across the zones. Whether this is due to their disease condition or other factors is not clear. If it is due to their disease condition, then the question arises whether it is due to poor health that they left their work or they were removed by the employer. However this is beyond the scope of this survey.

Household Characteristics Housing

As with other studies, this survey accentuates the clearly low socio-economic profile of the average TB patient in India. Beginning with the positive, it is heartening to note that most TB patients live in at least semi-pucca (37%) or pucca houses (33%) – accounting for at least 70% of TB patients in decent to good housing conditions (Table 3.3) However in the east and west zone, majority of them live in kutcha houses (44% and 42% respectively).

Drinking Water

A high degree of spatial variation regarding access to drinking water is observed. In the north, 47% of the TB patients identified have their own private taps; in the east, TB patients access water through tube wells (22%) and/or private pumps (34%), in the south, public taps (44%) supplement private taps (41%) while in the western region, public sources of water dominate: public hand pumps (32%) and public taps (27%).

Cooking Fuel

With regard to cooking fuel, unfortunately, it is quite clear that most TB patients do not have access to clean sources of fuel. Overall biomass sources dominate all sources of fuel supply: wood (69%) followed by dung cakes (20%). However, it is encouraging to note that LPG and natural gas are accessed by at least 25% of the TB patients. Almost none of the TB patients (1% only in the south, and 0% in the north and the east) accessed electricity for cooking. These figures clearly correlate biomass fuel sources and primitive combustion technologies with an increased risk of TB. Therefore, clean cooking fuel for TB patients must be actively advocated.

32


TABLE 3.3: Household characteristics of the TB patients identified and interviewed in the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

TYPE OF HOUSE Pucca

47

(42)

40

(22)

27

(27)

51

(48)

165

(33)

Semi-pucca

48

(43)

60

(34)

31

(31)

45

(42)

184

(37) (29)

Kutcha

16

(14)

78

(44)

42

(42)

9

(8)

145

Total

111

(100)

179

(100)

100

(100)

106

(100)

496

SOURCE OF DRINKING WATER Private tap

52

(47)

6

(3)

17

(17)

43

(41)

118

(24)

Private hand pump

23

(21)

61

(34)

11

(11)

1

(1)

96

(19)

Public tap

10

(9)

30

(17)

27

(27)

47

(44)

114

(23)

Public hand pump

22

(20)

28

(16)

32

(32)

1

(1)

83

(17)

Tube well

4

(4)

40

(22)

2

(2)

1

(1)

47

(9)

Supply tanker

0

(0)

2

(1)

0

(0)

0

(0)

2

(0)

Well/River/Pond

0

(0)

4

(2)

9

(9)

12

(11)

25

(5)

Other

0

(0)

6

(3)

0

(0)

0

(0)

6

(1)

Total

111

(100)

179

(100)

100

(100)

106

(100)

496

TYPE OF COOKING FUEL Electricity

0

(0)

0

(0)

3

(3)

1

(1)

4

(1)

Wood

76

(68)

124

(69)

67

(67)

75

(71)

342

(69)

Coal/Lignite

1

(1)

2

(1)

1

(1)

3

(3)

7

(1)

Kerosene

0

(0)

1

(1)

2

(2)

1

(1)

4

(1)

LPG/Natural gas

13

(12)

31

(17)

23

(23)

55

(52)

122

(25)

Charcoal

0

(0)

1

(1)

0

(0)

1

(1)

2

(0)

Bio-gas

1

(1)

0

(0)

1

(1)

1

(1)

3

(1)

Dung cakes

28

(25)

69

(39)

2

(2)

0

(0)

99

(20)

Agricultural crop waste

9

(8)

22

(12)

0

(0)

0

(0)

31

(6)

Straw/Shrubs/ Grass

3

(3)

48

(27)

0

(0)

0

(0)

51

(10)

Total Respondents

111

179

100

Household Assets

106

496

The data on household assets owned by TB patients suggests improved conditions of basic living: 81% of the patients had access to electricity, possessed their own basic furniture: mattresses (63%), chairs (74%) cot or bed (82%) and a fan (62%) (Table 3.4). Mobile ownership is high (73%) with south zone having the lowest percentage of mobile phone ownership (58%) – an interesting anomaly considering other overall indicators of economic development. However, the south dominates in terms of TB patients having access to motorised means of transport (46% of patients owned either a motorbike or scooter) while in the north and the west, most owned a bicycle (55% and 64%, respectively).

33


TABLE 3.4: Household assets of the TB patients identified and interviewed in the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HOUSEHOLD ASSETS* Electricity

87

(78)

124

(69)

87

(87)

105

(99)

403

(81)

Mattress

87

(78)

81

(45)

67

(67)

77

(73)

312

(63)

Pressure cooker

62

(56)

70

(39)

51

(51)

61

(58)

244

(49)

Chair

72

(65)

121

(68)

74

(74)

99

(93)

366

(74)

A cot or bed

111

(100)

133

(74)

84

(84)

81

(76)

409

(82)

A table

58

(52)

81

(45)

48

(48)

76

(72)

263

(53)

Fan

75

(68)

70

(39)

66

(66)

98

(92)

309

(62)

Radio

12

(11)

17

(9)

20

(20)

19

(18)

68

(14)

A black & white television

11

(10)

19

(11)

7

(7)

2

(2)

39

(8)

A colour television

58

(52)

56

(31)

62

(62)

99

(93)

275

(55)

A sewing machine

34

(31)

26

(15)

21

(21)

12

(11)

93

(19)

A mobile telephone

89

(80)

129

(72)

84

(84)

62

(58)

364

(73)

Land line

0

(0)

5

(3)

2

(2)

11

(10)

18

(4)

A computer/laptop

0

(0)

9

(5)

4

(4)

6

(6)

19

(4)

A refrigerator

13

(12)

26

(15)

17

(17)

23

(22)

79

(16)

A watch or clock

90

(81)

118

(66)

89

(89)

99

(93)

396

(80)

A bicycle

69

(62)

97

(54)

64

(64)

45

(42)

275

(55)

A motorcycle or scooter

25

(23)

17

(9)

23

(23)

49

(46)

114

(23)

An animal drawn cart

6

(5)

13

(7)

10

(10)

1

(1)

30

(6)

A car

1

(1)

13

(7)

0

(0)

4

(4)

18

(4)

Water pump

18

(16)

22

(12)

9

(9)

8

(8)

57

(11)

A thresher

2

(2)

2

(1)

1

(1)

0

(0)

5

(1)

A tractor

5

(5)

0

(0)

4

(4)

0

(0)

9

(2)

STANDARD OF LIVING INDEX (SLI) Low SLI

28

(25)

99

(55)

28

(28)

12

(11)

167

(34)

Medium SLI

44

(40)

45

(25)

46

(46)

52

(49)

187

(38)

High SLI

39

(35)

35

(20)

26

(26)

42

(40)

142

(28)

Less than Rs. 2000

15

(14)

23

(13)

23

(23)

14

(13)

75

(15)

Rs 2001 - 4000

48

(43)

72

(40)

39

(39)

24

(23)

183

(37)

Rs 4001 - 8000

34

(31)

47

(26)

20

(20)

19

(18)

120

(24)

Rs 8001 - 10000

6

(5)

10

(6)

5

(5)

27

(26)

48

(10)

Rs 10000+

1

(1)

12

(7)

3

(3)

18

(17)

34

(7)

Can't say

7

(6)

15

(8)

10

(10)

2

(2)

34

(7)

HOUSEHOLD INCOME

* Multiple response question

34


Standard of Living Index

The national data for the standard of living index (SLI) suggests an equal distribution across low, medium and high standard of living with about a third in each segment with majority in medium SLI. However, the majority of patients from the east zone are from low SLI (55%). 52% of all TB patients live on lesser than Rs 4000 a month. Interestingly 26% of patients from the south live on an income between Rs 8000- 10,000 per month, which is highest amongst all zones.

Knowledge about TB Awareness about what Causes TB

Less than half of the TB patients knew the cause of TB across sexes and all age groups while a noticeable proportion of patients irrespective of literacy did not know the cause of TB (Table 3.5). Greater proportion of TB patients in high income group knew the cause of TB (40%). The level TABLE 3.5: Awareness about causes of TB among TB patients interviewed during midline KAP survey, 2013 Micro organism/ germs

%

Other cause

%

Don’t know

%

Not recorded

%

Total

%

SEX Male

141

(47)

24

(8)

130

(43)

7

(2)

302

(100)

Female

78

(40)

16

(8)

98

(51)

2

(1)

194

(100)

AGE GROUP 25-54 Years

124

(45)

24

(9)

120

(44)

5

(2)

273

(100)

55+ Years

72

(46)

11

(7)

70

(45)

3

(2)

156

(100)

Illiterate

57

(34)

11

(7)

97

(58)

2

(1)

167

(100)

Literate

159

(49)

28

(9)

130

(40)

7

(2)

324

(100)

LITERACY

MONTHLY HOUSEHOLD INCOME < 4000 Rs

97

(37)

25

(10)

131

(50)

7

(3)

260

(100)

>= 4000 Rs

107

(53)

13

(6)

80

(40)

2

(1)

202

(100)

Don't know

15

(44)

2

(6)

17

(50)

0

(0)

34

(100)

Tribal

37

(44)

13

(15)

32

(38)

3

(4)

85

(100)

Non-Tribal

182

(44)

27

(7)

196

(48)

6

(1)

411

(100)

DISTRICT TYPE

TYPE OF SETTLEMENT Rural

157

(43)

36

(10)

170

(46)

6

(2)

369

(100)

Urban

62

(49)

4

(3)

58

(46)

3

(2)

127

(100)

North

32

(29)

20

(18)

56

(50)

3

(3)

111

(100)

East

68

(38)

10

(6)

98

(55)

3

(2)

179

(100)

West

45

(45)

7

(7)

47

(47)

1

(1)

100

(100)

South

74

(70)

3

(3)

27

(25)

2

(2)

106

(100)

Total

219

(44)

40

(8)

228

(46)

9

(2)

496

ZONES

35


of awareness of cause of TB among the tribal and non-tribal TB patient was not different and awareness in urban TB patients was higher than the rural. The TB patients from the south zone are more literate than the other zones which might have influenced on the higher knowledge for the ‘cause of TB’.

Symptoms Experienced by TB Patients Prior to Diagnosis of TB

On an average, the majority of TB patients experienced cough as a symptom of TB (81%) and this is similar across all zones followed by fever (59%) (Table 3.6). The RNTCP strategy of case finding by screening patients with ‘cough for 2 weeks or more with or without others symptoms’ seems ideal as per the evidence seen in this survey. TABLE 3.6: Symptoms experienced by TB patients prior to diagnosis of TB among TB patients interviewed during midline KAP survey, 2013 North New TB patients

95

%

East

%

West

%

South

%

Total

%

(86)

135

(75)

82

(82)

83

(78)

395

(80)

MAJOR SYMPTOMS EXPERIENCED Cough

94

(85)

127

(71)

86

(86)

95

(90)

402

(81)

Fever

68

(61)

115

(64)

52

(52)

58

(55)

293

(59)

Chest pain

42

(38)

68

(38)

41

(41)

52

(49)

203

(41)

Blood in sputum

34

(31)

93

(52)

44

(44)

8

(8)

179

(36)

Weight loss

16

(14)

50

(28)

34

(34)

18

(17)

118

(24)

Total Respondents

111

179

100

106

496

Most of the TB patients had cough of more than 3 weeks (21%) in comparison with 2 weeks (9%) (Table 3.7). However, a noticeable proportion of patients had cough of 1 week (15%). Using the current strategy of identifying TB suspect will lose or delay the diagnosis in 15% of the TB cases. TABLE 3.7: Duration of cough and fever before diagnosis of TB among TB patients interviewed during midline KAP survey, 2013 Cough Duration

%

Fever Duration

%

DURATION IN WEEKS 1 week

90

18

75

15

2 weeks

47

9

34

7

3 weeks

102

21

57

11

4-6 weeks

42

8

27

5

7-10 weeks

7

1

11

2

11-20 weeks

10

2

2

0

Absence of corresponding symptom

198

40

290

58

Total

496

100

496

100

Health Seeking Behaviour of TB Patients Prior to Diagnosis

Overall, 73% of those who experience TB like symptoms seek health care between 1-30 days for their symptoms. Almost 11% of the patients who had TB symptoms for less than a week sought medical care (Table 3.8). Most of the TB patients (62%) with symptoms actively sought health

36


care after 1 week to 1 month. Noticeably higher proportion of the patients (85%) from the south zone seek early healthcare in comparison to other zones. Almost 26% of those with TB symptoms seek healthcare within 1-3 months. This is high risk behaviour and could play a key role in TB transmission. The health seeking behaviour in TB patients from north, east and west is less which correlates with the lower overall levels of education in these zones. Almost 53% of TB patients visit qualified practitioners and a higher proportion of patients visit Government practitioners or health providers (35%) as compared to private practitioners. TB patients from north and east zones mostly consulted qualified private doctors while TB patients from west and south seek healthcare from Government dispensaries. Almost 25% of the TB patients seek health care from unqualified providers. The level of awareness on the duration of TB symptoms and treatment services should be enhanced especially in the north, east and west zones so that they seek health care early from qualified health care providers in the Government sector. TABLE 3.8: Health seeking behaviour of TB patients prior to diagnosis of TB among TB patients interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

FIRST VISIT TO HEALTH SERVICE PROVIDER AFTER ONSET OF SYMPTOM* Less than a week

16

(14)

21

(12)

9

(9)

10

(9)

56

(11)

After a week to 14 days

46

(41)

50

(28)

30

(30)

54

(51)

180

(36)

15 days to a month

28

(25)

45

(25)

30

(30)

27

(25)

130

(26)

After a month to less than 2 months

11

(10)

27

(15)

14

(14)

7

(7)

59

(12)

2-3 Months

3

(3)

12

(7)

3

(3)

0

(0)

18

(4)

More than 3 months

2

(2)

13

(7)

9

(9)

2

(2)

26

(5)

Not visited/Don't remember

5

(5)

11

(6)

5

(5)

6

(6)

27

(5)

AFTER SYMPTOMS - WHOM DID YOU CONSULT ?* Qualified private doctor/ clinic

44

(40)

61

(34)

14

(14)

13

(12)

132

(27)

Govt dispensary/health centre

38

(34)

30

(17)

30

(30)

29

(27)

127

(26)

Unqualified healer in locality (quack)

15

(14)

20

(11)

19

(19)

0

(0)

54

(11)

Local health care provider

8

(7)

19

(11)

7

(7)

12

(11)

46

(9)

Chemist

16

(14)

24

(13)

1

(1)

5

(5)

46

(9)

Faith healer

3

(3)

6

(3)

1

(1)

13

(12)

23

(5)

111

(100)

179

(100)

100

(100)

106

(100)

496

Total

*Percentages do not add upto 100 as missing or not recorded values are not included in the table

37


Place of Diagnosis, Number of Providers Visited and Duration of Symptoms before Diagnosis

A total of 71% of the respondents have heard of free diagnosis and treatment with highest proportions in west (83%) and lowest in east (59%). Of those who had heard of free diagnosis and treatment, 96% went to government facility for diagnosis (Table 3.9). From this it is very clear that knowledge plays a key role in taking health related decisions. 81% visit one or two providers before they are diagnosed with TB, with south being the highest (92%). 81% get diagnosed within one month of onset of symptoms with south again the highest (94%) and east being the least (70%). 28% in east get diagnosed after one month. This needs immediate attention. The delay in diagnosis has direct implication on continued transmission. TABLE 3.9: Place of diagnosis, number of providers visited and duration of symptoms before diagnosis of TB among TB patients interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HEARD OF FREE DIAGNOSIS AND TREATMENT Yes

80

(72)

106

(59)

83

(83)

82

(77)

351

(71)

Govt health facility

75

(68)

100

(56)

81

(81)

81

(76)

337

(68)

Pvt health facility

0

(0)

5

(3)

5

(5)

2

(2)

12

(2)

Non-govt health facility

1

(1)

2

(1)

0

(0)

0

(0)

3

(1)

DOTS centre

0

(0)

2

(1)

1

(1)

0

(0)

3

(1)

PLACE OF DIAGNOSIS*

NUMBER OF PROVIDERS VISITED** 1 provider

47

(42)

86

(48)

59

(59)

85

(80)

277

(56)

2 providers

37

(33)

49

(27)

24

(24)

13

(12)

123

(25)

3 providers

22

(20)

39

(22)

13

(13)

5

(5)

79

(16)

5 providers

0

(0)

2

(1)

1

(1)

0

(0)

3

(1)

>5 providers

5

(5)

3

(2)

3

(3)

3

(3)

14

(3)

DURATION BETWEEN ONSET OF SYMPTOMS TO DIAGNOSIS** 1 month

13

(12)

51

(28)

17

(17)

6

(6)

87

(18)

Can't say

4

(4)

3

(2)

1

(1)

0

(0)

8

(2)

WAS THIS THE FIRST TIME YOU WERE DIAGNOSED WITH TB New

95

(86)

135

(75)

82

(82)

83

(78)

395

(80)

Previously treated

16

(14)

44

(25)

18

(18)

23

(22)

101

(20)

Total

111

(100)

179

(100)

100

(100)

106

(100)

496

*Percentages do not add to 100 as others, missing or not recorded values are not included in the table **Total percentages exceeds 100 due to rounding up to zero decimals

38


Treatment Initiation, Place of Treatment and Awareness on Treatment Duration

47% of the TB patients were started on treatment within one week and 43% were initiated on treatment more than a week after diagnosis (Table 3.10). Interestingly, east zone had highest proportion of people who were put on treatment within one week (52%) and least in the west (32%). This is an area that cannot be neglected. The reasons for the delay in initiation of treatment need to be ascertained and appropriate measures need to be taken to address it. Zone wise data reveals that in west 57% are initiated on treatment after one week, of this strikingly 32% are initiated on treatment at 3 weeks or later. In other zones this is 12-13%. The delay in treatment initiation suggests sustained transmission. TABLE 3.10: Treatment initiation, place of treatment and awareness on treatment duration among TB patients interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

TREATMENT INITIATION 1-3 days

43

(39)

77

(43)

19

(19)

27

(25)

166

(33)

4 days-1 week

11

(10)

17

(9)

13

(13)

26

(25)

67

(14)

>1-2 weeks

9

(8)

33

(18)

11

(11)

20

(19)

73

(15)

>2-3 weeks

18

(16)

14

(8)

14

(14)

10

(9)

56

(11)

>3 weeks

13

(12)

23

(13)

32

(32)

14

(13)

82

(17)

Can't say

0

(0)

1

(1)

0

(0)

0

(0)

1

(0)

Not recorded

17

(15)

14

(8)

11

(11)

9

(8)

51

(10)

Total

111

(100)

179

(100)

100

(100)

106

(100)

496

PLACE OF TREATMENT* AND REGULARITY Govt health centres, free of cost under DOTS

48

(43)

70

(39)

58

(58)

77

(73)

253

(51)

Govt health centres, with payment for medicines

11

(10)

5

(3)

11

(11)

7

(7)

34

(7)

Non-govt health centres, free of cost

1

(1)

0

(0)

1

(1)

3

(3)

5

(1)

Non-govt health centres, with payment for medicines

15

(14)

33

(18)

8

(8)

3

(3)

59

(12)

Self purchase

18

(16)

39

(22)

9

(9)

3

(3)

69

(14)

Aware that treatment has to be taken regularly

78

(70)

116

(65)

86

(86)

98

(92)

378

(76)

Less than 2 weeks

2

(2)

0

(0)

0

(0)

2

(2)

4

(1)

2-4 weeks

1

(1)

2

(1)

0

(0)

0

(0)

3

(1)

1-3 months

2

(2)

11

(6)

4

(4)

1

(1)

18

(4)

4-5 months

1

(1)

8

(4)

4

(4)

5

(5)

18

(4)

6-8 months

62

(56)

87

(49)

59

(59)

67

(63)

275

(55)

More than 8 months

29

(26)

55

(31)

26

(26)

26

(25)

136

(27)

Don't know

13

(12)

14

(8)

7

(7)

1

(1)

35

(7)

Total

219

(44)

40

(8)

228

(46)

9

(2)

496

DURATION OF TREATMENT


39


Overall, only 59% are taking treatment under DOTS (free of cost), with the highest proportions from the south zone (76%) and least from east (39%). The maximum number of patients who pay for their medicines comes from east zone (43%) closely followed by north (40%) and west (29%). The east zone also shows the lowest proportions that were aware of TB treatment regularity and the correct duration of the treatment. These observations correlate with the providers they seek and their place of treatment, requiring special attention in east zone. Inspite of a strong TB control programme offering free TB diagnosis and treatment services with country-wide coverage, one third of TB patients (34%) are buying their own TB medicines, with inadequate treatment follow up, irrational regimens and high risk of drug-resistance. This is a major gap in which needs a systematic regulation of TB services outside the programme. Only 76% knew that TB treatment should be taken regularly and only 55% knew that the treatment duration as 6-8 months. Obviously, there appears to be a serious lack of communication of treatmentrelated information to the patient. There must be specific efforts to inform the patient about his/ her treatment details by the providers. The general health seeking behaviour suggests that 39% seek health care from the private sector (Table 3.11). This correlates with the observation that 34% take TB treatment outside DOTS programme. The major reason for seeking private health care is the distance from a government centre followed by long waiting hours. The private clinics/hospitals are usually close-by to the home i.e. easy access; this is clearly a very important factor especially during sickness. The long distance also means taking leave from work, which translates to loss of wages for daily wage workers who constitute the second largest group of patients in the study. General health seeking TABLE 3.11: General health seeking behaviour of TB patients interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HEALTH SEEKING BEHAVIOUR* Govt hospital (including PHC, CHC)

41

(37)

80

(45)

63

(63)

85

(80)

269

(54)

Private clinic/ Private hospital

65

(59)

74

(41)

36

(36)

20

(19)

195

(39)

Ayurvedic health service providers

0

(0)

0

(0)

0

(0)

1

(1)

1

(0)

Traditional healer/ Quacks

1

(1)

6

(3)

0

(0)

0

(0)

7

(1)

REASON FOR NOT GOING TO GOVERNMENT CENTRES** Lack of diagnostic facility

9

(8)

14

(8)

6

(6)

1

(1)

30

(6)

Unfriendly behaviour of govt staff

3

(3)

9

(5)

2

(2)

9

(8)

23

(5)

Facility is far from home

40

(36)

41

(23)

9

(9)

7

(7)

97

(20)

Long waiting hours

18

(16)

28

(16)

12

(12)

6

(6)

64

(13)

Unavailability of doctors

9

(8)

18

(10)

8

(8)

8

(8)

43

(9)

Pvt clinics offer better services

11

(10)

20

(11)

7

(7)

3

(3)

41

(8)

* Percentages do not add upto 100 as ‘others’ not included in the table ** Multiple response by those who opted other than govt hospitals

40


behaviour of TB patients shows specific patterns which need to be understood and integrated into policy in the context of TB care.

Tobacco Use among TB Patients

All the respondents were asked whether they use tobacco in any form of which 175 respondents (35%) responded affirmatively. Further to this, among those respondents who use tobacco, 24% smoke, 36% use smokeless tobacco and 5% are dual users. Noticeably 35% did not respond to this question (Table 3.12). 49% of the tobacco users have been using tobacco for more than 10 years. A majority of the smokers use beedi and among those using smokeless tobacco, 55% chew tobacco. The median age of initiation for tobacco use is 20 years. Though there was a fair knowledge about TB and tobacco linkage, and 73% were advised to quit using tobacco during their visits to the hospital however they continue to use tobacco even till the time the survey was conducted. Over and above their own use, 32% are further exposed to second hand smoke. The co-morbidity of TB and tobacco has been well established. However, the efforts to help TB patients quit using tobacco are still poor. Awareness among the health service providers to advise TB patients about quitting tobacco by explaining the harmful effects and the dangers especially during the treatment should be an absolute must. At the same time, the required support systems like cessation centres accessible to the patients either in their communities or in the hospitals must be established. TABLE 3.12: Tobacco use among TB patients interviewed during the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

DO YOU CURRENTLY USE TOBACCO? Missing

0

(0)

0

(0)

0

(0)

1

(1)

1

(0)

Yes, using Tobacco

34

(31)

74

(40)

38

(41)

29

(27)

175

(35)

No, not using Tobacco

75

(68)

105

(56)

53

(57)

74

(70)

307

(62)

Not applicable

2

(2)

7

(4)

2

(2)

2

(2)

13

(3)

111

(100)

186

(100)

93

(100)

106

(100)

496

Total

IF YES, TYPE OF TOBACCO CURRENTLY USE No response

9

(26)

26

(35)

16

(42)

11

(38)

62

(35)

Smoke

16

(47)

16

(22)

8

(21)

2

(7)

42

(24)

Smokeless

9

(26)

28

(38)

11

(29)

15

(52)

63

(36)

Both

0

(0)

4

(5)

3

(8)

1

(3)

8

(5)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

IF YES, FOR HOW LONG HAVE YOU BEEN USING TOBACCO No response

6

(18)

8

(11)

3

(8)

16

(55)

33

(19)

less than 1 year

0

(0)

1

(1)

7

(18)

1

(3)

9

(5)

1-3 Years

12

(35)

6

(8)

6

(16)

0

(0)

24

(14)

4-10 Years

3

(9)

11

(15)

6

(16)

3

(10)

23

(13)

>10 Years

13

(38)

48

(65)

16

(42)

9

(31)

86

(49)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

Contd...

41


North

%

East

%

West

%

South

%

Total

%

DO YOU KNOW THE ASSOCIATION BETWEEN SMOKING AND TB DISEASE No response

7

(21)

5

(7)

3

(8)

14

(48)

29

(17)

Yes

17

(50)

26

(35)

14

(37)

10

(34)

67

(38)

No

10

(29)

43

(58)

21

(55)

5

(17)

79

(45)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

DO YOU KNOW SMOKING INCREASES THE RISK OF DEVELOPING TB DISEASE No response

6

(18)

5

(7)

3

(8)

14

(48)

28

(16)

Yes

21

(62)

42

(57)

24

(63)

11

(38)

98

(56)

No

7

(21)

27

(36)

11

(29)

4

(14)

49

(28)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

ARE YOU AWARE THAT SMOKING DAMAGES THE DEFENCE MECHANISMS No response

5

(15)

5

(7)

4

(11)

14

(48)

28

(16)

Yes

22

(65)

39

(53)

24

(63)

12

(41)

97

(55)

No

7

(21)

30

(41)

10

(26)

3

(10)

50

(29)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

ARE YOU AWARE OF THE CONSEQUENCES IF YOU CONTINUE TO SMOKE DURING TREATMENT No response

5

(15)

4

(5)

4

(11)

14

(48)

27

(15)

Yes

19

(56)

31

(42)

23

(61)

11

(38)

84

(48)

No

10

(29)

39

(53)

11

(29)

4

(14)

64

(37)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

DURING YOUR VISIT TO A DOCTOR/HEALTH CARE PROVIDER WERE YOU ADVISED TO QUIT SMOKING/USING TOBACCO? No response

5

(15)

5

(7)

3

(8)

14

(48)

27

(15)

Yes

28

(82)

57

(77)

28

(74)

15

(52)

128

(73)

No

1

(3)

12

(16)

7

(18)

0

(0)

20

(11)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

ARE YOU EXPOSED TO SECOND-HAND SMOKE (PASSIVE SMOKING) No response

5

(15)

5

(7)

3

(8)

13

(45)

26

(15)

Yes

7

(21)

33

(45)

15

(39)

1

(3)

56

(32)

No

22

(65)

36

(49)

20

(53)

15

(52)

93

(53)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

DO YOU KNOW ITS HARMFUL EFFECTS ON YOU AS A TB PATIENT No response

19

(56)

24

(32)

14

(37)

23

(79)

80

(46)

Yes

10

(29)

32

(43)

20

(53)

4

(14)

66

(38)

No

5

(15)

18

(24)

4

(11)

2

(7)

29

(17)

Total

34

(100)

74

(100)

38

(100)

29

(100)

175

42


Experiences of Stigma and Discrimination

Most of the TB patients (95%) shared about their disease status with their families/households and almost everyone experienced supportive behaviour from their families (Table 3.13). However only 60% of them informed their disease status their friends of which 24% experienced discriminatory practices (like not shaking hands, not entering one’s house and not sharing meals) from their friends. Of those who were married, 15% experienced discriminatory behaviour from their partners. Nearly half (46%) believe that both male and female patients suffer equally in the communities, however when it comes to getting married, a female TB patients have less prospects when compared to male TB patients. Regarding to their work, only 17% shared their disease status with their employers of which 34% had to change their work after sharing their status. TABLE 3.13: Experiences of stigma and discrimination among TB patients interviewed during the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

INFORMED ABOUT YOUR DISEASE STATUS TO YOUR HOUSEHOLD/FAMILY Missing

0

(0)

0

(0)

0

(0)

1

(1)

1

(0)

Yes

102

(92)

179

(96)

91

(98)

97

(92)

469

(95)

No

5

(5)

5

(3)

2

(2)

5

(5)

17

(3)

Do not want to answer

3

(3)

2

(1)

0

(0)

2

(2)

7

(1)

Not applicable

1

(1)

0

(0)

0

(0)

1

(1)

2

(0)

111

(100)

186

(100)

93

(100)

106

(100)

496

Total

IF YES THEN HOW DO YOU RATE THEIR REACTION? Missing

0

(0)

0

(0)

0

(0)

1

(1)

1

(0)

Supportive

94

(92)

174

(97)

88

(97)

97

(99)

453

(96)

Not supportive

3

(3)

4

(2)

1

(1)

0

(0)

8

(2)


5

(5)

1

(1)

2

(2)

0

(0)

8

(2)

102

(100)

179

(100)

91

(100)

98

(100)

470

Total

IF NO, WHY DID YOU NOT INFORM THEM? Missing

0

(0)

1

(20)

0

(0)

3

(60)

4

(24)

Fear

4

(80)

3

(60)

1

(50)

0

(0)

8

(47)

Discrimination

1

(20)

1

(20)

1

(50)

2

(33)

5

(29)

Total

5

(100)

5

(100)

2

(100)

5

(100)

17

HAVE YOU INFORMED YOUR DISEASE STATUS TO YOUR FRIENDS. Missing

0

(0)

0

(0)

0

(0)

2

(2)

2

(0)

Yes

57

(51)

136

(73)

70

(75)

35

(33)

298

(60)

No

50

(45)

44

(24)

23

(25)

67

(63)

184

(37)


4

(4)

6

(3)

0

(0)

2

(2)

12

(2)

111

(100)

186

(100)

93

(100)

106

(100)

496

Total

Contd...

43


North

%

East

%

West

%

South

%

Total

%

IF YES, DID YOU EXPERIENCE ANY DISCRIMINATION FROM YOUR FRIENDS Missing

0

(0)

0

(0)

0

(0)

1

(3)

1

(0)

Yes

18

(32)

27

(20)

13

(19)

14

(38)

72

(24)

No

38

(67)

108

(79)

57

(81)

20

(54)

223

(74)


1

(2)

1

(1)

0

(0)

2

(5)

4

(1)

Total

57

(100)

136

(100)

70

(100)

37

(100)

300

IF MARRIED, DID YOU SEE ANY DISCRIMINATORY CHANGE IN THE RELATIONSHIP WITH YOUR PARTNER? Missing

3

(3)

8

(6)

1

(1)

3

(3)

15

(4)

Yes

20

(23)

7

(5)

23

(30)

7

(8)

57

(15)

No

52

(60)

107

(82)

46

(61)

78

(86)

283

(74)


12

(14)

8

(6)

6

(8)

3

(3)

29

(8)

Total

87

(100)

130

(100)

76

(100)

91

(100)

384

IN YOUR COMMUNITY, DO YOU THINK THAT IF A BOY HAS TB, WILL HE GET MARRIED Missing

0

(0)

2

(1)

1

(1)

4

(4)

7

(1)

Yes

28

(25)

114

(61)

49

(53)

58

(55)

249

(50)

No

77

(69)

50

(27)

33

(35)

25

(24)

185

(37)


6

(5)

20

(11)

10

(11)

19

(18)

55

(11)

111

(100)

186

(100)

93

(100)

106

(100)

496

Total

IN YOUR COMMUNITY, DO YOU THINK THAT IF A GIRL HAS TB WILL SHE GET MARRIED? Missing

0

(0)

2

(1)

0

(0)

4

(4)

6

(1)

Yes

28

(25)

112

(60)

50

(54)

55

(52)

245

(49)

No

80

(72)

63

(34)

35

(38)

25

(24)

203

(41)


3

(3)

9

(5)

8

(9)

22

(21)

42

(8)

111

(100)

186

(100)

93

(100)

106

(100)

496

Total

IN YOUR COMMUNITY, WHO DO YOU THINK SUFFER MORE MALE OR FEMALE TB PATIENTS? Missing

0

(0)

0

(0)

0

(0)

2

(2)

2

(0)

Males

8

(7)

19

(10)

10

(11)

26

(25)

63

(13)

Females

21

(19)

25

(13)

7

(8)

12

(11)

65

(13)

Both suffer equally

48

(43)

70

(38)

55

(59)

56

(53)

229

(46)

Do not know

28

(25)

69

(37)

19

(20)

10

(9)

126

(25)

No one suffers

6

(5)

3

(2)

2

(2)

0

(0)

11

(2)

111

(100)

186

(100)

93

(100)

106

(100)

496

Total

Contd...

44


North

%

East

%

West

%

South

%

Total

%

IF THE PERSON IS EMPLOYED, DID YOU SHARE YOUR DISEASE STATUS WITH YOUR EMPLOYER? Missing

10

(9)

25

(13)

1

(1)

20

(19)

56

(11)

Yes

15

(14)

29

(16)

30

(32)

12

(11)

86

(17)

No

19

(17)

58

(31)

31

(33)

42

(40)

150

(30)


8

(7)

6

(3)

6

(6)

2

(2)

22

(4)

Not applicable

59

(53)

68

(37)

25

(27)

30

(28)

182

(37)

Total

111

(100)

186

(100)

93

(100)

106

(100)

496

DID YOU HAVE TO CHANGE YOUR EMPLOYMENT BECAUSE OF YOUR DISEASE STATUS? Missing

19

(17)

25

(13)

5

(5)

21

(20)

70

(14)

Yes

9

(8)

4

(2)

8

(9)

8

(8)

29

(6)

No

22

(20)

77

(41)

52

(56)

47

(44)

198

(40)


13

(12)

12

(6)

8

(9)

0

(0)

33

(7)

Not applicable

48

(43)

68

(37)

20

(22)

30

(28)

166

(33)

Total

111

(100)

186

(100)

93

(100)

106

(100)

496

Existing and Preferred Source of TB Related Information

Regarding the source of TB-related information most of the surveyed TB patients (59%) responded that hospital/doctor was their key source of TB related information, followed by television (48%) and friends/relatives (35%) (Table 3.14). Further, they prefer the same sources of information to receive any TB related information in future. These observations suggest that TB patients considered hospital/doctors as the most valued sources of the provision of TB related information, also suggesting that individual conversations are prioritised over mass media sources. It could also mean that all the TB related information the patients have at this time of survey could be contributed to health service providers. An important observation was that only 11% responded that radio is their existing source of TB related information and 12% said they would prefer receiving TB related information through the radio. This also correlates with the observation that only 14% of the study respondents possess a radio (Table 3.3). At present, many awareness programmes via radio are being implemented across the country. However these need to be revisited so that resources are allocated efficiently. The dissemination strategy for TB related information to TB patients needs to be contextualised and health workers need to be adequately trained to provide the right information to TB patients.

45


TABLE 3.14: Existing and preferred source of TB related information among TB patients interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SOURCE OF TB RELATED INFORMATION* EXISTING SOURCE Television

37

(33)

68

(38)

60

(60)

71

(67)

236

(48)

Hospital/doctor

91

(82)

97

(54)

49

(49)

55

(52)

292

(59)

Friends and relatives

38

(34)

78

(44)

37

(37)

20

(19)

173

(35)

Newspaper/ magazines/ hoardings/posters/ billboards/wall writing

34

(31)

26

(15)

27

(27)

53

(50)

140

(28)

Radio

5

(5)

12

(7)

16

(16)

20

(19)

53

(11)

Radio

7

(6)

17

(9)

11

(11)

25

(24)

60

(12)

Cinema

3

(3)

2

(1)

10

(10)

5

(5)

20

(4)

Newspaper/ magazine/hoardings

34

(31)

23

(13)

28

(28)

59

(56)

144

(29)

Television

44

(40)

72

(40)

66

(66)

74

(70)

256

(52)

Hospital/doctors

86

(77)

125

(70)

60

(60)

59

(56)

330

(67)


24

(22)

71

(40)

22

(22)

22

(21)

139

(28)

Total Respondents

111

PREFERRED SOURCE

179

100

106

496

* Multiple response questions

Summary There is a significant gap in the knowledge about TB among the TB patients in this study. There are variations across the different zones as well. Though 81% get diagnosed within one month, only 47% are initiated on treatment within one week. The larger health system gaps and the patient-provider related delays should be studied in detail and appropriate changes need to be implemented at the earliest. Apart from this, the lack of basic knowledge on cause of TB (germs/bacteria) among the TB patients reveals that even though they visit the doctors, health workers or DOT providers regularly, no one has time to explain to the TB patient about its causes, treatment duration, and transmission. It is a patient’s right to know his/her health condition and the reasons for the condition. Emphasis needs to be given on providing the correct information to every single TB patient.

46


TABLE 3.15: Summary of key indicators of knowledge about TB among TB patients interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

Total number of TB patients

111

22

179

36

100

20

106

21

496

(100)

TB patients who were male

69

(62)

102

(57)

65

(65)

66

(62)

302

(61)

TB patients who were illiterate

43

(39)

80

(45)

29

(29)

15

(14)

167

(34)

Patients with household income less than Rs. 2000

15

(14)

23

(13)

23

(23)

14

(13)

75

(15)

Aware that TB is caused by microorganisms

32

(29)

68

(38)

45

(45)

74

(70)

219

(44)

Heard of free diagnosis and treatment of TB

80

(72)

106

(59)

83

(83)

82

(77)

351

(71)

Aware of Govt health facility for free diagnosis and treatment

75

(68)

100

(56)

81

(81)

81

(76)

337

(68)

Visited Two or less providers for diagnosis of TB

84

(76)

135

(75)

83

(83)

98

(92)

400

(81)

Patients diagnosed within 1 month of the onset of symptoms

94

(85)

125

(70)

82

(82)

100

(94)

401

(81)

Patients initiated on treatment within 7 days of diagnosis

54

(49)

94

(53)

32

(32)

53

(50)

233

(47)

Receiving free treatment under DOTS

55

(50)

88

(49)

62

(62)

90

(85)

295

(59)


78

(70)

116

(65)

86

(86)

98

(92)

378

(76)

Aware that the duration of treatment is for 6-8 months

62

(56)

87

(49)

59

(59)

67

(63)

275

(55)

Total Respondents

111

179

100

47

106

496

Summary Results: TB Patients Demographic Profile • Around 44% were illiterate or have no formal education.

• Total interviewed 496, highest in Bihar State.

• More than half are either wage labourers or agriculture workers (51%).

• TB patients are predominantly male (61%). • 40% respondents in the age group 26-45 years and around 43% were above 43 years.

• 13% are unemployed equally across the four zones.

Knowledge about TB 100 90

83

80

Percentage

70

50

85

83 76

76 75

56

45

West

South

92 86 70 64

60

65

58 43

38

40

East

82 70

68 59

60

30

77

72

70

81

North

94

92

59

56

63

49

29

20 10 0

Patients Patients Aware that Aware that Heard of free Place of free Two or less diagnosed Initiated on treatment TB is caused diagnosis and diagnosis and providers for within treatment has to treatment of treatment diagnosis of TB by 1 month within 7 days be taken microorganisms Tuberculosis (Govt Health of the onset of diagnosis regularly facility) of symptoms


Knowledge of TB among TB patients • 71% heard of free diagnosis and treatment.

• Less than half (44%) knew the cause of TB as germs/ bacteria. This pattern is similar among both sexes and all age groups.

• 76% aware that treatment has to be taken regularly. • Only 55% of them knew correct duration of treatment as 6-8 months is quite low across all the zones.

• 73% of those who experience TB symptoms seek health care within one month of onset of symptoms.

Attitudes towards TB disease and TB patients 100

Disease status shared with friends North

80

Percentage

73 60

40

West

South

75

Experiences of stigma and discrimination • 95% of the TB patients shared their disease status with their families, out of which 96% experienced supportiveness of their families.

51 38 33

32 20 19

20

0

East

Informed disease status to friends

Experienced discriminatory behaviour from friends

• Only 60% shared their disease status with their friends, of which 24% experienced discrimination. • Only 17% shared with their employers and 6% had to change their jobs.

90

82

North

80

West

South

67

70

60

60 Percentage

East

54

50 40

49

52

50 44

38

33

37

34

31

27

30 19

20

5

10 0

Television

Hospital/Doctor


19

16

15 7

Newspaper/Magazines Hoardings/Posters Billboards

Radio

Media source for TB related information

Existing sources of related information

TB

• For 59% of TB patients hospital/doctor was the key source of TB related information followed by television (48%) • Friends/relatives don’t figure as one of the information sources for over 50% of the respondents across the zones. • Only 11% responded that radio is their existing source of TB related information.

Practices towards TB patients & TB Disease Type of facilities visited for TB diagnosis

DOTS Centre

0 1 1 0

Non-Govt Health facility

0 0 1 1

South

0

East

North

Diagnosis and treatment • 68% of the TB patients across the zones went to government health facilities for the diagnosis.

2 Pvt Health facility

West

• 81% were diagnosed within one month.

5

3

Number of providers visited 76

Govt Health facility

56

0

20

40

• Nearly half (45%) had visited more than one provider

81

68

60

80

100

• South zone has highest proportion of TB patients vising only one provider

Percentage

Treatment Initiation >5 providers

5 providers

2 0 0

• 47% were initiated on treatment within one week.

3 3

1 1

Tobacco use

West

• 35% of TB patients use tobacco in any form. • Of these, 24% smoke, 36% use smokeless and 5% are dual users.

North 13 20 12

2 providers

South

East 5

3 providers

Number of providers visited before diagnosing TB

5

22

24

• On an average, only 50% of those who use tobacco knew the association of TB and tobacco.

27 33

• 73% of all tobacco users are advised to quit using tobacco.

80 1 provider

42 0

20

48

40

59

60 Percentage

80

100

• 32% of all tobacco users are also exposed to second hand smoking.

Conclusion • Though 81% get diagnosed within one month, only 47% are initiated on treatment within one week. • There is a significant gap in the knowledge among the TB patients in this study. There are variations across the different zones as well. • The larger health system gaps and the patient-provider related delays should be studied in detail and appropriate changes need to be implemented at the earliest.

CHAPTER

4 Results: Health Service Providers

Health service providers in this survey included those available at the village/ward level whom the general population approaches for health care. There are very few formally qualified medical doctors at this level, most of them available were female health workers like ANM or anganwadi workers. When the investigators conducted the survey, in most of the primary health care centers doctors were not available. The locals shared that often there was no doctor available and that they sought the pharmacist’s or health worker’s help. For any emergencies the villagers are forced to either go to the district hospital or the nearest private nursing home.

Demographic Profile Table 4.1 describes the profile of Health service providers (HSPs) found at village or ward level and interviewed during the survey. Most of the service providers were mostly female (59%) and a larger proportion of them (70%) fall in the working age group of 26-45 years. Interestingly, half of the HSPs are either private practitioners (24%) or anganwadi workers (31%). Lesser than 15% of the providers appear to have been trained in the formal healthcare (allopathic) sector - government doctors (4%), nurses (7%) or PHC workers (4%). This is clearly reflected in the pattern of formal education that qualifies these health sector workers: nearly half have no formal qualifications (44%) or have “other” training (29%) – which appears to be a residual category and requires further research. After learning the profile of the health service providers, it is clear that at a given point of time in a village or ward, finding a medical qualified provider is quite a challenge. Considering the large population in India, using the available resources is most reasonable. Hence the available providers need to be trained in TB care and control as they could play a key role in Indian settings. Regional variation in the pattern of consultation and dispensing of health practice is pronounced: in the north, HSPs consult and dispense (50%) while this figure is much lower in the south (18%). Given that there is no non-allopathic cure for TB, this is a disturbing portrait, especially with the pronounced pattern of TB providers being in a position to both consult and dispense in the most populated parts of the country (73% of providers consult and dispense TB medicines in the west, 46% in the east) and the bulk of these providers being untrained in formal medicine.

HSPs Knowledge about TB Symptoms

Only about half of HSPs are aware of at least three of the key symptoms of TB: cough of 2 weeks (53%), pain in the chest (40% this is much less in the north and west zone where it is 9% and 12% respectively) and coughing up blood (41%) (Table 4.2). The inference here is a little disturbing: if there is such a wide degree of variation in knowledge about symptoms of TB amongst HSPs, then diagnosis itself will vary – and the risk of missing TB is correspondingly high.

50

Chapter 4 Results: Health Service Providers

TABLE 4.1: General characteristics of health service providers interviewed during the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

CHARACTERISTICS Male

61

(55)

53

(40)

39

(50)

59

(30)

212

(41)

Female

50

(45)

81

(60)

39

(50)

141

(71)

311

(59)

12

(11)

8

(6)

6

(8)

9

(5)

35

(7)

AGE 18-25 years 26-35 years

33

(30)

43

(32)

29

(38)

67

(34)

172

(33)

36-45 years

33

(30)

47

(35)

29

(38)

85

(43)

194

(37)

46 + years

32

(29)

36

(27)

13

(17)

39

(20)

120

(23)

CATEGORY OF HEALTH SERVICE PROVIDER Private practitioner

45

(41)

32

(24)

31

(40)

16

(8)

124

(24)

Government doctor

2

(2)

7

(5)

7

(9)

6

(3)

22

(4)

Nurse

3

(3)

5

(4)

3

(4)

23

(12)

34

(7)

ANM

8

(7)

40

(30)

13

(17)

31

(16)

92

(18)

PHC worker

1

(1)

4

(3)

1

(1)

13

(7)

19

(4)

Anganwadi worker

37

(33)

29

(22)

20

(26)

75

(38)

161

(31)

Chemists/Druggist

15

(14)

17

(13)

3

(4)

36

(18)

71

(14)

MBBS

1

(1)

9

(7)

4

(5)

5

(3)

19

(4)

BAMS

5

(5)

0

(0)

8

(10)

8

(4)

21

(4)

EDUCATION

BHMS

2

(2)

2

(1)

4

(5)

2

(1)

10

(2)

BUMS

1

(1)

3

(2)

2

(3)

2

(1)

8

(2)

Degree/Diploma in nursing

3

(3)

13

(10)

8

(10)

23

(12)

47

(9)

B.Pharma/D. Pharma

3

(3)

3

(2)

2

(3)

20

(10)

28

(5)

Others

34

(31)

24

(18)

29

(37)

65

(33)

152

(29)

No formal qualification

60

(54)

80

(60)

19

(24)

71

(36)

230

(44)

Unknown

2

(2)

0

(0)

2

(3)

4

(2)

8

(2)

Consultation

22

(20)

37

(28)

9

(12)

51

(26)

119

(23)

Dispensing

26

(23)

27

(20)

8

(10)

37

(19)

98

(19)

Consulting and dispensing

55

(50)

61

(46)

57

(73)

35

(18)

208

(40)

Others

8

(7)

9

(7)

4

(5)

77

(39)

98

(19)

111

(100)

134

(100)

78

(100)

200

(100)

523

NATURE OF PRACTICE

Total

51


The majority of HSPs diagnosed pulmonary TB (90%). Sixty seven percent confirm pulmonary TB using sputum smear test. However, only about one third of the providers know about MDR-TB. The inferences suggested from this table are logically correlated with the fact that majority of HSPs are not formally trained. This clearly suggests that focused training or dissemination of precise and accurate knowledge about TB with HSPs would be a warranted investment with clear payoffs. TABLE 4.2: Knowledge about TB symptoms, type of TB patients treating and awareness on MDR TB among health service providers who treat TB patients North

%

East

%

West

%

South

%

Total

% (45) (55)

HSP’S WHO SEE/COME ACROSS TB PATIENTS IN THEIR TREATMENT No Yes

85 26

(77) (23)

58 76

(43) (57)

51 27

(65) (35)

41 159

(21) (80)

235 288

Total

111

(100)

134

(100)

78

(100)

200

(100)

523

Cough of over 2 weeks

24

(22)

74

(55)

25

(32)

155

(78)

278

(53)

Pain in the chest

10

(9)

50

(37)

12

(15)

138

(69)

210

(40)

Coughing up blood

15

(14)

54

(40)

15

(19)

128

(64)

212

(41)

Fever

11

(10)

36

(27)

10

(13)

96

(48)

153

(29)

Weight loss

13

(12)

37

(28)

15

(19)

112

(56)

177

(34)

8

(7)

33

(25)

7

(9)

64

(32)

112

(21)

SYMPTOMS OF TB*

Poor appetite Total

111

134

78

200

523

TYPE OF TB PATIENTS DIAGNOSED BY HSP* Pulmonary TB

20

(18)

74

(55)

20

(26)

150

(75)

264

(50)

Lymph TB

5

(5)

7

(5)

5

(6)

32

(16)

49

(9)

Spinal TB

3

(3)

2

(1)

3

(4)

36

(18)

44

(8)

Bone TB

4

(4)

5

(4)

7

(9)

43

(22)

59

(11)

Abdominal TB

9

(8)

5

(4)

8

(10)

38

(19)

60

(11)

Total

111

134

78

200

523

TESTS DO YOU USUALLY ADVICE FOR CONFIRMING PULMONARY TB Others

30

(27)

55

(41)

21

(27)

66

(33)

172

(33)

Sputum smear test

81

(73)

79

(59)

57

(73)

134

(67)

351

(67)

Total

111

(100)

134

(100)

78

(100)

200

(100)

523

AWARE OF MDR TB No Yes Total

92 19 111

(83) (17) (100)

97 37 134

(72) (28) (100)

58 20 78

(74) (26) (100)

123 77 200

(62) (39) (100)

370 153 523

(71) (29)

11

(58)

23

(62)

14

(70)

68

(88)

116

(76)

2 7 19

(11) (37)

5 4 37

(14) (11)

3 9 20

(15) (45)

17 5 77

(22) (6)

27 25 153

(18) (16)

DIAGNOSIS OF MDR TB Sputum Culture/Drug Susceptibility test Clinical examination Any other tests Total *Multiple response question

52


HSPs Knowledge on TB Diagnosis and Treatment

Reasonably high awareness levels about diagnostic facilities are observed: overall 80% of the HSPs refer TB symptomatics to government’s DMC facilities (Table 4.3). Very few problems are reportedly faced in terms of accessing sputum smear examinations for TB per se (about 13% did not face any problem for sputum examination). However, of those who did report some problems, the issues are concentrated around the non-availability of facilities (which is highest in the west, 60%) or the non-availability of staff (47% not available – highest in the south). TABLE 4.3: TB diagnosis and treatment approach of health service providers interviewed during the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

REFER PLACE FOR SPUTUM TEST Nearest government facility including DMC

81

(73)

102

(76)

62

(79)

173

(87)

418

(80)

Private hospital/nursing home/local private labs

12

(11)

12

(9)

6

(8)

4

(2)

34

(7)

Private collection centres

3

(3)

0

(0)

0

(0)

0

(0)

3

(1)

Patients choose themselves

2

(2)

2

(1)

1

(1)

0

(0)

5

(1)

HSP conduct themselves

0

(0)

2

(1)

0

(0)

3

(2)

5

(1)

Total FACE ANY KIND OF PROBLEM FOR SPUTUM SMEAR EXAMINATION FOR TB Not recorded

0

(0)

0

(0)

0

(0)

5

(3)

5

(1)

Face any kind of problem for sputum smear examination for TB

11

(10)

9

(7)

5

(6)

36

(18)

61

(12)

No

27

(24)

41

(31)

28

(36)

76

(38)

172

(33)

Not applicable

73

(66)

84

(63)

45

(58)

83

(42)

285

(54)

Total

111

(100)

134

(100)

78

(100)

200

(100)

523

Non-availability of facility

4

(36)

4

(44)

3

(60)

23

(64)

34

(56)

Non-availability of staff

4

(36)

2

(22)

1

(20)

17

(47)

24

(39)

Patient is unable to pay for test

4

(36)

1

(11)

2

(40)

8

(22)

15

(25)

Poor quality result

1

(9)

0

(0)

0

(0)

0

(0)

1

(2)

Total

11

(100)

9

(100)

5

(100)

36

(100)

61

TYPE OF PROBLEMS FACED

Contd...

53


North

%

East

%

West

%

South

%

Total

%

POST DIAGNOSIS ACTIVITY Start treatment on my own

16

(14)

18

(13)

12

(15)

17

(9)

63

(12)

Refer patient to another doctor

20

(18)

31

(23)

14

(18)

55

(28)

120

(23)

Refer patient to private facility

8

(7)

5

(4)

4

(5)

5

(3)

22

(4)

Refer patient to government centre/DOTS provider/DOTS centre

48

(43)

54

(40)

33

(42)

102

(51)

237

(45)

Refer to NGO

0

(0)

1

(1)

0

(0)

2

(1)

3

(1)

Not applicable

14

(13)

24

(18)

15

(19)

10

(5)

63

(12)

Others

5

(5)

1

(1)

0

(0)

9

(5)

15

(3)

111

(100)

134

(100)

78

(100)

200

(100)

523

Total

SYSTEM OF MEDICINE FOLLOWED IF TREATING ON OWN Allopathic

12

(75)

14

(78)

11

(92)

8

(47)

45

(71)

Homeopathy

0

(0)

0

(0)

0

(0)

1

(6)

1

(2)

Ayurveda

0

(0)

0

(0)

0

(0)

1

(6)

1

(2)

Others

4

(25)

4

(22)

1

(8)

7

(41)

16

(25)

Total

16

(100)

18

(100)

12

(100)

17

(100)

63

TREATMENT DURATION FOR TB 1-2 weeks

1

(1)

1

(1)

0

(0)

0

(0)

2

(0)

2-4 weeks

3

(3)

1

(1)

2

(3)

5

(3)

11

(2)

1-5 months

5

(5)

9

(7)

0

(0)

4

(2)

18

(3)

6-8 months

80

(72)

86

(64)

62

(79)

170

(85)

398

(76)

More than 8 months

19

(17)

31

(23)

13

(17)

16

(8)

79

(15)

Not recorded

3

(3)

6

(4)

1

(1)

5

(3)

15

(3)

111

(100)

134

(100)

78

(100)

200

(100)

523

Total

What do HSPs actually do once TB is clearly diagnosed? Nearly half (45%) send the patients to a DOTS facility, which is the optimal course of action; 12% commence treatment on their own 23% refer to another doctor and 4% to a private facility. The health service providers (12%) who do initiate their patients on treatment on their own are aware that allopathy is the best treatment for TB whereas 25% seem to indicate “Other” – which may be deleterious for the patient, and risks development of MDR-TB. In terms of treatment duration, the majority of providers (76%) know that treatment length is between 6-8 months or more.

Challenges Faced by HSPs

On an average more than half of the HSPs responded that there were no difficulties in treating TB patients. Strikingly, HSPs from south zone responded (62%) that they have difficulties in the treating TB patients (Table 4.4). Although on average more than 80% of the TB people are not hesitant to come to HSPs and this is consistent across all zones. With the difficulty of treating patients in south zone, TB patients (15%) are also hesitant to visit the HSPs as responded by HSPs. TB drugs were not available for 19% of HSPs. This has a negative impact for the HSPs who are

54


TABLE 4.4: Challenges faced, precautions taken and advices given to TB patients by health service providers interviewed during the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

DIFFICULTIES IN TREATING TB PATIENTS* People hesitate to come for treatment

27

(24)

40

(30)

29

(37)

125

(63)

221

(42)

Non-availabilty of antiTB drugs

23

(21)

32

(24)

13

(17)

30

(15)

98

(19)

No pathology or X-ray lab available in the vicinity

9

(8)

24

(18)

19

(24)

57

(29)

109

(21)

People do not reveal history of TB easily

11

(10)

22

(16)

18

(23)

112

(56)

163

(31)

Patients often do not complete treatment

0

(0)

10

(7)

0

(0)

10

(5)

20

(4)

Total

RISK OF TREATING TB PATIENTS Treating TB constitutes risk to others

25

(23)

37

(28)

16

(21)

35

(18)

113

(22)

No

50

(45)

76

(57)

43

(55)

132

(66)

301

(58)

Don't know/can't say

33

(30)

15

(11)

12

(15)

13

(7)

73

(14)

Not recorded

3

(3)

6

(4)

7

(9)

20

(10)

36

(7)

Total

PRECAUTION TO PROTECT SELF FROM TB* Maintain distance

54

(49)

44

(33)

37

(47)

140

(70)

275

(53)

Wear masks and gloves

30

(27)

24

(18)

36

(46)

88

(44)

178

(34)

Wash hands with soap

34

(31)

77

(57)

29

(37)

133

(67)

273

(52)

None

13

(12)

32

(24)

16

(21)

28

(14)

89

(17)

Total

ADVICE TO PATIENTS TO AVOID SPREADING TB* Cover mouth while coughing

98

(88)

123

(92)

72

(92)

182

(91)

475

(91)

Use separate utensils

60

(54)

36

(27)

42

(54)

147

(74)

285

(54)

Not to spit anywhere

78

(70)

83

(62)

56

(72)

164

(82)

381

(73)

Use separate towels/ clothes

39

(35)

48

(36)

25

(32)

144

(72)

256

(49)

Isolate the patient

16

(14)

21

(16)

13

(17)

97

(49)

147

(28)

Total Respondents

111

134

78

200

523


enthusiastic to treat the patients with the difficulties they have. Similarly, pathology and x-ray services were not available in 21% of the HSPs. The current study revealed that patients are not hesitant to visit the HSPs for the TB diagnosis, treatment and care, but if the diagnostics are not in place, the level of hesitancy might increase among the patients. This can also have direct

55


impact on the general population’s treatment seeking behaviour. On average, almost one third of the patients visiting the HSPs had no history of TB. However, more 50% patients visiting HSPs from south zone had a history of TB which is significantly higher than other zones which have less than 25% with history of TB. The study revealed that despite the difficulty in treating the TB patients there are very few patients who did not complete the treatment in all zones.

Provider Perceptions on DOTS

Half of the HSPs felt that DOTS is an excellent strategy for TB treatment with highest response from west zone (67%) (Table 4.5). DOTS is a strategy adopted by WHO and RNTCP for TB treatment but it seemed that other half of the HSPs are not aware that this is an excellent strategy for treatment of TB. A significant number of the HSPs interviewed had no formal qualification (44%) and this group of HSPs might not be aware of DOTS as an excellent strategy to treat TB patients. RNTCP has announced several schemes for HSPs to involve them in DOTS programme and all partners are putting their effort on it but it appears that 71% of the HSPs are not aware of these schemes. HSPs specially engaged in private sectors that are seeing almost 60% of TB patients can significantly increase TB case notification if they are involved in RNTCP through the existing schemes. On an average 76% of the HSPs responded that other patients still continue to visit HSPs who are also seeing TB patients. Despite of having the high level of stigma and discrimination towards TB patients among the general population, they are not hesitant to seek treatment and care services along with the TB patients from the HSPs. TABLE 4.5: Perception about DOTS and awareness on RNTCP schemes among the health service providers interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

OPINION ABOUT DOTS FOR TB TREATMENT Excellent

46

(41)

51

(38)

52

(67)

113

(57)

262

(50)

Good

24

(22)

48

(36)

15

(19)

44

(22)

131

(25)

Average

4

(4)

1

(1)

1

(1)

0

(0)

6

(1)

Bad

1

(1)

0

(0)

0

(0)

0

(0)

1

(0)

Not applicable

36

(32)

33

(25)

8

(10)

41

(21)

118

(23)

Not recorded

0

(0)

1

(1)

2

(3)

2

(1)

5

(1)

111

(100)

134

(100)

78

(100)

200

(100)

523

Total

AWARE ABOUT SCHEMES TO INVOLVE PRIVATE PRACTITIONERS IN DOTS PROGRAMME Yes

21

(19)

35

(26)

27

(35)

63

(32)

146

(28)

No

89

(80)

99

(74)

51

(65)

133

(67)

372

(71)

Not recorded

1

(1)

0

(0)

0

(0)

4

(2)

5

(1)

111

(100)

134

(100)

78

(100)

200

(100)

523

Total

OTHER PATIENTS AVOID VISITING Yes

3

(3)

5

(4)

7

(9)

9

(5)

24

(5)

No

76

(68)

106

(79)

49

(63)

166

(83)

397

(76)

Don't know/can't say

23

(21)

13

(10)

17

(22)

14

(7)

67

(13)

Not recorded

9

(8)

10

(7)

5

(6)

11

(6)

35

(7)

111

(100)

134

(100)

78

(100)

200

(100)

523

Total

56


TABLE 4.6: Predominant source of TB related information among the health service providers interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SOURCE OF TB RELATED INFORMATION* Medical journal

30

(27)

38

(28)

24

(31)

74

(37)

166

(32)

Colleague

23

(21)

41

(31)

16

(21)

97

(49)

177

(34)

CME/trainings

10

(9)

55

(41)

26

(33)

109

(55)

200

(38)

Professional bodies

4

(4)

7

(5)

6

(8)

42

(21)

59

(11)

Total

111

134

78

200

523


The predominant source of information for HSPs regarding TB related information is Continuing Medical Education (CME) or other trainings followed by colleagues and the medical journals (Table 4.6). Professional bodies almost did not have any role for informing HSPs regarding TB. The programme should conduct more CME/trainings to inform HSPs regarding TB. Information on the RNTCP schemes can also be given in the same session.

Summary Health service providers at village or ward levels are initial point of contact for TB patients. Since most of the time, the primary health services are not functioning well, the patients are forced to seek health care from basic health care workers, unqualified (quacks), the local chemist or visit the nearest district hospital. Hence the role of this workforce in TB care and control becomes inevitable. Empowering this group of health workers with correct knowledge about TB, its transmission, diagnosis and treatment will contribute in better outcomes and TB control programme as such.

57


TABLE 4.7: Summary of key knowledge and practice indicators of health service providers in treating TB North

%

East

%

West

%

South

%

Total

%

(22)

74

(55)

25

(32)

155

(78)

278

(53)

(73)

102

(76)

62

(79)

173

(87)

418

(80)

(43)

54

(40)

33

(42)

102

(51)

237

(45)

(71)

MAJOR SYMPTOM OF TB Cough of over 2 weeks

24

REFER PLACE FOR SPUTUM TEST Nearest government facility including DMC

81

REFER PLACE FOR TREATMENT Refer patient to government centre/DOTS provider/DOTS centre

48

SYSTEM OF MEDICINE FOLLOWED IF TREATING ON OWN (N = 63) Allopathic

12

(75)

14

(78)

11

(92)

8

(47)

45

Total

16

(100)

18

(100)

12

(100)

17

(100)

63

No

92

(83)

97

(72)

58

(74)

123

(62)

370

(71)

Yes

19

(17)

37

(28)

20

(26)

77

(39)

153

(29)

No

8

(42)

14

(38)

6

(30)

9

(12)

37

(24)

Sputum culture/drug susceptibility test

11

(58)

23

(62)

14

(70)

68

(88)

116

(76)

Total

19

(100)

37

(100)

20

(100)

77

(100)

153

(72)

86

(64)

62

(79)

170

(85)

398

(76)

AWARE OF MDR TB

DIAGNOSIS OF MDR TB

TREATMENT DURATION FOR TB 6-8 Months

80

AWARE ABOUT SCHEMES TO INVOLVE PRIVATE PRACTITIONERS IN DOTS PROGRAMME Yes

21

(19)

35

(26)

27

(35)

63

(32)

146

(28)

CME/trainings

10

(9)

55

(41)

26

(33)

109

(55)

200

(38)

Total

111

(100)

134

(100)

78

(100)

200

(100)

523

SOURCE OF INFORMATION

58

Summary Results: Health Service Providers (HSPs) Demographic Profile

• Most of the health service providers are female (59%) and a larger proportion of them (70%) fall in the working age group of 26-45 years

• Health service providers (HSPs) included private practitioner (24%), government doctors (4%),

• Less than 15% of the providers have been trained in the formal healthcare (allopathic)

nurses (7%), Auxiliary Nurse Midwife (18%), PHC workers

• Nearly half have no formal qualifications (44%) or have ‘other’ training (29%) – which requires further research

(4%), anganwadi workers (31%), chemist/drugist (14%)

Knowledge about TB 100 87

90 78

80

79

73 76

North

92

88 79

75 78

70

Percentage

70 60

58

55

51

50

43

40 30 20

East

62

West

South

85

72 64

47

40 42

39

32

35

28 26

22

32

26 19

17

10 0

Refer place Aware of Refer place major for sputum for treatment symptom of test (Nearest (Government TB (Cough of government center/DOTS centre) over 2 weeks) facilityinc luding DMC)

Medicine system fol lowed if treating on own (Allopathic)

Diagnosis of MDR TB (Sputum culture/Drug susceptibility test)

Aware of MDR TB

Treatment Aware about duration schemes to (6–8 mont) involve private for TB practitioners in DOTS programme

Knowledge about TB among HSPs • 53% knew cough over 2 weeks as key symptom of TB • Only about one-third of the providers knew about MDR-TB • 80% refer to the government’s DMC facilities for sputum test • Nearly half (45%) send the patients to a government centre/DOTS facility for treatment • 76% knew the correct duration of treatment 6-8 months

Attitudes towards TB disease and TB patients

32%

26%

41%

North

East 1% 4%

Opinion about DOTS for TB treatment 37%

0% 1%

• Half of the HSPs (50%) responded that DOTS is an

36%

excellent strategy for TB

Average

• Only 28% knew about the

22%

treatment Excellent

Good

Average

Bad

Not applicabel

Excellent

Good

Bad

Not applicabel

schemes to involve private 0% 1%

West

practitioners in DOTS

13%

19%

21%

South

67%

22%

Excellent

Good

Average

Bad

Not applicabel

programme

0% 0%

1ST Qtr

Excellent Bad

57%

Good Average Not applicabel

North

East

23%

28% 44%

3%

Risk of treating TB patients

57%

• 22% said that treating TB constitites

4% 30%

11%

risk to others and 58% said no to this

No

• 76% of the HSPs responded that

Don’t know/ Can’t say West

South

9%

visit HSPs who are also seeing TB

Not recorded

patients • 53% HSPs, maintain distance from TB patients and protect themselves • 34% wear masks and gloves and 52% wash hands with soap while treating

Treating TB constitutes risk to others

18%

21%

other patients still continue to

10%

55%

65%

7%

15%

TB patients.

Practices towards TB patients 100 90

North

87

80

76

73

East

West

South

79

Diagnosis

Percentage

70

• 80% refer patients to government

60

facility for diagnosis

50

• Only 7% refer to private hospitals or

40

nursing homes

30 20 11

10

9

8

3

2

0

Nearest government facility including DMC

Private hospital/ nursing home/ local private labs

North

0

2

0

1

1

0

0

Patients choose themselves

1

0

2

HSP conduct themselves

East

7%

4% 23%

18% 43%

40% 13%

14% 5%

0

Private collection centers

1%

13% 0%

Refer patient to government center/DOTS provider/DOTS center

Other Not applicable

18%

13%

1%

Refer to NGO Start treatment on my own

West


South

Refer patient to private facility

3%

5% 18%

Post diagnosis activity • Post diagnosis, nearly half (45% overall) send the patients to a government facility/DOTS centre for treatment • 12% of those who diagnose TB, treat patients on their own. • Of those who treat on their own, 71% follow allopatic system of medicine

27% 43%

50%

15% 0%

19%

0%

9% 5%

5%1%

Conclusion Health service providers at village or ward levels are initial point of contact for TB patients. Since most of the time, the primary health services are not functioning well, the patients are forced to seek health care from basic health care workers, unqualified (quacks), the local chemist or visit the nearest district hospital. Hence the role of this workforce in TB care and control becomes inevitable. Empowering this group of health workers with correct knowledge about TB, its transmission, diagnosis and treatment will contribute in better outcomes and TB control program as such.

CHAPTER

5 Results: Opinion Leaders

Demographic Profile The bulk of opinion leaders are in the working age profile, with 69% of them being between 36 and 46 years old (Table 5.1). Position-wise, most opinion leaders across India are teachers (23%), followed by ward members (predominant in the east) and then village pradhans (16%), which is corroborated by the fact that TB in India is a disease found mostly in rural areas as per this survey’s data. Not surprisingly, the bulk of opinion leaders are reasonably well-educated. 49% of all opinion-leaders have some high school training – 24% at the secondary level, and 25% educated to the senior secondary level but without having graduated. About a fourth have had some college education. TABLE 5.1: General profile of opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

69 66

(51) (49)

93 87

(52) (48)

75 88

(46) (54)

79 54

(59) (41)

316 295

(52) (48)

9 44 41 41

(7) (33) (30) (30)

10 46 54 70

(6) (26) (30) (39)

8 42 63 50

(5) (26) (39) (31)

6 27 48 51

(5) (20) (36) (38)

33 159 206 212

(5) (26) (34) (35)

0

(0)

0

(0)

0

(0)

1

(1)

1

(0)

23 22

(17) (16)

20 22

(11) (12)

40 9

(25) (6)

14 23

(11) (17)

97 76

(16) (12)

18 1 3

(13) (1) (2)

53 8 1

(29) (4) (1)

18 8 2

(11) (5) (1)

30 6 3

(23) (5) (2)

119 23 9

(19) (4) (1)

20 36 9

(15) (27) (7)

25 44 3

(14) (24) (2)

47 30 2

(29) (18) (1)

20 28 5

(15) (21) (4)

112 138 19

(18) (23) (3)

1 2 15

(1) (1) (14)

4 0 17

(2) (0) (13)

5 2 3

(3) (1) (4)

4 0 36

(3) (0) (18)

14 4 71

(2) (1) (14)

GENDER Male Female AGE 18-25 years 26-35 years 36-45 years 46 years and above Not recorded OCCUPATION Village pradhan Panchayat member Ward member Religious leader Auxiliary Nurse Midwife Anganwadi worker Teacher Gaon Kalyan Samiti member Others Missing Chemist/druggist

TYPE OF SETTLEMENT Rural

114

(84)

117

(65)

89

(55)

98

(74)

418

(68)

Urban

21

(16)

63

(35)

74

(45)

35

(26)

193

(32)

Contd...

61


North

%

East

%

West

%

South

%

Total

%

10 3

(7) (2)

6 13

(3) (7)

6 4

(4) (2)

0 0

(0) (0)

22 20

(4) (3)

5 27

(4) (20)

12 42

(7) (23)

8 39

(5) (24)

0 15

(0) (11)

25 123

(4) (20)

31

(23)

30

(17)

35

(21)

52

(39)

148

(24)

20

(15)

35

(19)

26

(16)

33

(25)

114

(19)

38

(28)

39

(22)

43

(26)

32

(24)

152

(25)

1 135

(1) (100)

3 180

(2) (100)

2 163

(1) (100)

1 133

(1) (100)

7 611

(1)

EDUCATION Illiterate Literate but no formal education Less than primary Primary but less than secondary Secondary but less than senior secondary Senior secondary but not graduate Graduate and above Missing Total

Knowledge about TB

What do those who are opinion-shapers actually know about TB? In terms of top-of-the-mind recall, TB is not recalled, but it is mentioned by leaders in the north (37%) and the east (31%) (Table 5.2). With those who did mention TB (without prompting), we find that over half of these leaders do know about TB but a strikingly low mention of this is common amongst opinion leaders in the south (only 38% mention TB). This is probably because of the relatively lower incidence and prevalence of TB in the south.

Symptoms and Diagnosis Place

Most opinion leaders are aware of two key TB symptoms: a cough of 2 weeks and coughing up of blood. 75% of them know that TB is transmitted through the air, while only 55% of those in the south knew this. Wrong knowledge of the modes of TB transmission are prevalent amongst opinion leaders: 42% think it is transmitted by sharing a cigarette or beedis while 41% think it is transmitted by sharing food with the infected person. This requires correcting and would be a clear ‘to-do’ for TB control to be really effective, and to buttress training efforts of other health service providers. All the same, there is consistently good knowledge of where TB diagnosis can take place, with 90% of opinion leaders stating that the PHC or a government hospital or a DMC is the place to go.

Treatment Place and Duration

Almost all opinion leaders have heard of TB and they knew that TB is curable. This correlates with their educational background as most opinion leaders are educated (Table 5.3). In contrast, although the opinion leaders from the south zone were educated they had less knowledge that TB is curable than in other zones. Strikingly, almost half of the opinion leaders from all zones didn’t hear about DOTs which is the currently being practiced in India and elsewhere and Government of India is advocating for TB care and control. The RNTCP is adopting WHO’s DOTS strategy for TB treatment and this uses anti-TB drugs supplied from the DOTS centre and the community DOTS provider. Almost half of the opinion leaders surveyed knew that TB treatment was through DOTS and this is true for north, east and west zones. The opinion leaders (28%) from the south zone seemed less knowledgeable about the DOTS and TB treatment and a significant proportion knew that TB is treated by other allopathic medicines. More than 80% of opinion leaders knew that TB treatment is for longer duration and the place of treatment is in the Government sector.

62

Chapter 5 Results: Opinion Leaders

TABLE 5.2: Knowledge about TB, symptoms, mode of transmission and diagnosis of TB among opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HEARD OF TB - SPONTANEOUS RECALL TB mentioned

50

(37)

55

(31)

31

(19)

55

(41)

191

(31)

TB not mentioned

84

(62)

124

(69)

132

(81)

77

(58)

417

(68)

Yes

76

(56)

125

(69)

132

(81)

51

(38)

384

(63)

No

7

(5)

0

(0)

0

(0)

11

(8)

18

(3)

Not applicable

50

(37)

55

(31)

31

(19)

55

(41)

191

(31)

A cough of 2 weeks

113

(90)

156

(87)

162

(99)

89

(84)

520

(90)

Pain in the chest

32

(25)

50

(28)

50

(31)

64

(60)

196

(34)

HEARD OF TB - ON PROBING

SYMPTOMS OF TB*

Coughing up blood

62

(49)

114

(63)

88

(54)

61

(58)

325

(57)

Night sweat

3

(2)

6

(3)

7

(4)

37

(35)

53

(9)

Weight loss

26

(21)

51

(28)

59

(36)

65

(61)

201

(35)

Loss of appetite

22

(17)

44

(24)

34

(21)

34

(32)

134

(23)

Through air when infected person cough's or sneezes

98

(78)

135

(75)

150

(92)

65

(61)

448

(78)

Through sharing cigarettes/beedis with infected person

66

(52)

73

(41)

47

(29)

63

(59)

249

(43)

Through sharing food with infected person

57

(45)

79

(44)

82

(50)

24

(23)

242

(42)

Through sharing bed/ clothes with infected person

38

(30)

41

(23)

31

(19)

13

(12)

123

(21)

Through hand shake with infected person

14

(11)

14

(8)

15

(9)

2

(2)

45

(8)

Sputum smear test

94

(75)

122

(68)

124

(76)

72

(68)

412

(72)

X-ray

89

(71)

99

(55)

96

(59)

72

(68)

356

(62)

Mantoux skin test

2

(2)

3

(2)

10

(6)

37

(35)

52

(9)

Don't know/can’t say

8

(6)

29

(16)

13

(8)

19

(18)

69

(12)

Government hospital/PHC/ DOTS centre

114

(90)

166

(92)

160

(98)

94

(89)

534

(93)

Private hospital/clinic

44

(35)

71

(39)

31

(19)

12

(11)

158

(27)

Total

126

(100)

180

(100)

163

(100)

106

(100)

575

MODE OF TB TRANSMISSION*

DIAGNOSIS OF TB*

PLACE OF TB DIAGNOSIS*


63


TABLE 5.3: Knowledge on treatment of TB opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

119

(94)

171

(95)

155

(95)

91

(86)

536

(93)

7

(6)

9

(5)

8

(5)

15

(14)

39

(7)

Heard of DOTS

67

(53)

105

(58)

116

(71)

57

(54)

345

(60)

No/others

59

(47)

75

(42)

47

(29)

49

(46)

230

(40)

Herbal remedies

1

(1)

2

(1)

0

(0)

2

(2)

5

(1)

Home remedies

2

(1)

1

(1)

2

(1)

2

(2)

7

(1)

DOTS or TB drugs

89

(66)

96

(53)

105

(64)

36

(27)

326

(53)

Other allopathic medicines

45

(33)

97

(54)

43

(26)

71

(53)

256

(42)

Ayurvedic

3

(2)

5

(3)

3

(2)

2

(2)

13

(2)

Homeopathy

1

(1)

6

(3)

10

(6)

1

(1)

18

(3)

Don’t know/can't say

6

(4)

8

(4)

6

(4)

1

(1)

21

(3)

Less than 2 weeks

0

(0)

0

(0)

2

(1)

0

(0)

2

(0)

2-4 weeks

0

(0)

5

(3)

1

(1)

1

(1)

7

(1)

1-5 months

7

(5)

11

(6)

7

(4)

4

(3)

29

(5)

6-8 months

65

(48)

93

(52)

113

(69)

51

(38)

322

(53)

More than 8 months and others

36

(27)

47

(26)

25

(15)

52

(39)

160

(26)

DKCS

18

(13)

24

(13)

15

(9)

3

(2)

60

(10)

Not applicable

7

(5)

0

(0)

0

(0)

11

(8)

18

(3)

Missing

2

(1)

0

(0)

0

(0)

11

(8)

13

(2)

Government hospital/ PHC/DOTS centre

115

(85)

161

(89)

158

(97)

106

(80)

540

(88)


27

(20)

48

(27)

15

(9)

7

(5)

97

(16)

Total

135

(100)

180

(100)

163

(100)

133

(100)

611

TB IS CURABLE Yes No/Others HEARD OF DOTS

TREATMENT OF TB*


PLACE OF TB TREATMENT*


The study showed that the opinion leaders from east and south zones had low levels of knowledge on TB treatment (DOTS and TB drugs). The general population and TB patients in the communities look up to these leaders and seek their guidance for health related issues. Hence it is essential that the opinion leaders be equipped with correct knowledge about TB and its treatment. 63% of the opinion leaders who do know about TB have knowledge levels that are generally good except for the relatively lower level of knowledge about DOTS (only 40% know about DOTS). DOTSrelated brand-building efforts can be targeted at health service providers, and opinion leaders.

64


Role in Community

Only one third the opinion leaders knew about TB patients in their community which is true across all zones (Table 5.4). More than 80% of them from north, west and south zones gave advice to TB patients to go to the closest Government hospital, which correlated well with the level of knowledge they had on the place of TB treatment. However, 14% of the opinion leaders from the east zones advise their community members to go to private hospital which is noticeable and may have significant implications in the context of TB. The private sector are still not engaged in RNTCP for TB case notification in the country and if these leaders still recommend to seek treatment in the private sectors then this will add to the 1 million cases which are missing in a year. Most of the opinion leaders (83%) didn’t take any initiative to create awareness on TB in the community neither they take initiative to organise camps, rallies, lectures, seminar or workshops for TB. Almost 20% of the opinion leaders had worked as a DOT provider in the past. Level of knowledge about TB seems adequate among the opinion leaders. However, the practices related to TB in terms of generating awareness on TB in the community are still low. TABLE 5.4: Role played by opinion leaders in their communities to address TB North

%

East

%

West

%

South

%

Total

% (29)

KNOW TB PATIENTS IN NEIGHBOURHOOD Yes

39

(29)

57

(32)

51

(31)

33

(25)

180

Total

135

(100)

180

(100)

163

(100)

133

(100)

611

GIVE ADVICE TO TB PATIENTS IN NEIGHBOURHOOD Go to government hospital

35

(90)

45

(79)

46

(90)

31

(94)

157

(87)

Go to private hospital

2

(5)

8

(14)

2

(4)

0

(0)

12

(7)

None/not applicable

2

(5)

4

(7)

3

(6)

2

(6)

11

(6)

Total

39

(100)

57

(100)

51

(100)

33

(100)

180

TAKE INITIATIVE TOWARDS GENERATING AWARENESS Yes

23

(17)

35

(19)

33

(20)

15

(11)

106

(17)

No

112

(83)

145

(81)

130

(80)

118

(89)

505

(83)

Total

135

(100)

180

(100)

163

(100)

133

(100)

611

Organised camps

8

(35)

9

(26)

5

(15)

11

(73)

33

(31)

Organised rallies

3

(13)

13

(37)

8

(24)

6

(40)

30

(28)

Organised lectures/ seminar/workshops

3

(13)

12

(34)

6

(18)

3

(20)

24

(23)

Worked as DOT provider

3

(13)

10

(29)

6

(18)

2

(13)

21

(20)

Nukkad nataks/street plays/skits

3

(13)

7

(20)

4

(12)

0

(0)

14

(13)

Total

23

(100)

35

(100)

33

(100)

15

(100)

106

TYPE OF INITIATIVES*


65


Seriousness of TB and People Prone to it

Almost over half of the opinion leaders knew TB was a serious disease (Table 5.5). More than one third of the opinion leaders perceived people exposed to cough and cold for a long time, smokers and alcoholics are prone to TB and nearly one third of them perceived that people living in the unhygienic condition, malnourished, family members of TB are prone to TB. In reality, although those who are HIV positive are more prone to TB and the mortality of HIV patients is high due to TB; very few opinion leaders’ perceived HIV-infected people as being less prone to TB. In terms of general behaviour towards TB patients, most of the opinion leaders did not have any negative behaviours (46%) and one third of them helped and supported the TB patients.

Attitudes towards TB Patients

A majority of the opinion leaders have positive attitudes towards TB patients or their families. A noticeable observation is that majority agree that female TB patients face marital problems. TABLE 5.5: Seriousness about TB disease, awareness about those prone to TB among opinion leaders and behaviour of community towards TB patients North

%

East

%

West

%

South

%

Total

%

DO YOU THINK TB IS A SERIOUS DISEASE IN YOUR COMMUNITY? TB is a serious disease

92

(68)

117

(65)

102

(63)

40

(30)

351

(57)

No

32

(24)

63

(35)

61

(37)

29

(22)

185

(30)

WHO DO YOU THINK ARE PRONE TO TB?* Those living in unhygienic conditions

15

(11)

66

(37)

40

(25)

36

(27)

157

(26)

Poor people

27

(20)

27

(15)

27

(17)

12

(9)

93

(15)

Malnourished

28

(21)

59

(33)

56

(34)

9

(7)

152

(25)

Children

11

(8)

9

(5)

40

(25)

24

(18)

84

(14)

Women

8

(6)

8

(4)

18

(11)

9

(7)

43

(7)

Family members of TB

48

(36)

33

(18)

40

(25)

57

(43)

178

(29)


76

(56)

78

(43)

60

(37)

38

(29)

252

(41)

HIV +ve

12

(9)

16

(9)

5

(3)

13

(10)

46

(8)

Smokers

77

(57)

93

(52)

80

(49)

92

(69)

342

(56)

Alcoholics

33

(24)

72

(40)

74

(45)

66

(50)

245

(40)

IN YOUR COMMUNITY, HOW IS THE PERSON SUFFERING WITH TB TREATED?* Most people reject him/her

16

(12)

45

(25)

23

(14)

30

(23)

114

(19)


63

(47)

41

(23)

69

(42)

31

(23)

204

(33)

Community mostly helps and supports him/her

56

(41)

87

(48)

70

(43)

71

(53)

284

(46)

Normal behaviour

0

(0)

2

(1)

0

(0)

0

(0)

2

(0)

None

0

(0)

2

(1)

0

(0)

0

(0)

2

(0)

Not recorded

0

(0)

2

(1)

0

(0)

0

(0)

2

(0)

135

(100)

180

(100)

163

(100)

133

(100)

611

Total * Multiple response question

66


Detailed studies need to be conducted to document the kind of problems the female TB patients face, whether they are spouse-related, issues with children (including conception), taking care of household chores or in-laws related. Targeted and culturally sensitive solutions need to be provided to facilitate treatment completion and post treatment care for female TB patients. These could also include family counseling. About 40% of the opinion leaders agree that daily wage labourers should not be allowed to work (Table 5.6). The reasons are not clear as the survey does not capture the reasons. However it could be either to prevent infection to others or even for the patient to have physical rest and recover. TABLE 5.6: Attitudes of towards TB and TB patients among opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

A FAMILY WITH TB PATIENT SHOULD NOT BE ALLOWED TO PARTICIPATE IN ANY SOCIAL Strongly agree

23

(17)

23

(13)

28

(17)

2

(2)

76

(12)

Somewhat agree

24

(18)

18

(10)

12

(7)

9

(7)

63

(10)

Disagree

88

(65)

139

(77)

123

(75)

122

(92)

472

(77)

MARRIED FEMALE TB PATIENT SHOULD BE SENT OFF TO HER PARENTS HOUSE Strongly agree

1

(1)

11

(6)

14

(9)

4

(3)

30

(5)

Somewhat agree

10

(7)

9

(5)

8

(5)

6

(5)

33

(5)

Disagree

124

(92)

160

(89)

141

(87)

123

(92)

548

(90)


18

(13)

21

(12)

37

(23)

9

(7)

85

(14)

Somewhat agree

21

(16)

31

(17)

38

(23)

13

(10)

103

(17)

Disagree

96

(71)

128

(71)

88

(54)

111

(83)

423

(69)

DAILY WAGE LABOURERS SUFFERING FROM TB SHOULD NOT BE ALLOWED TO WORK Strongly agree

30

(22)

28

(16)

46

(28)

10

(8)

114

(19)

Somewhat agree

31

(23)

55

(31)

29

(18)

15

(11)

130

(21)

Disagree

73

(54)

97

(54)

88

(54)

108

(81)

366

(60)

HUSBANDS/IN-LAWS DO NOT ACCOMPANY FEMALE TB PATIENTS TO HOSPITAL/DOTS CENTRE Strongly agree

10

(7)

5

(3)

11

(7)

10

(8)

36

(6)

Somewhat agree

19

(14)

33

(18)

14

(9)

20

(15)

86

(14)

Disagree

104

(77)

142

(79)

138

(85)

103

(77)

487

(80)

FEMALES ACCOMPANY THEIR SPOUSE SUFFERING FROM TB TO HOSPITALS/DOTS CENTRE Strongly agree

94

(70)

154

(86)

130

(80)

90

(68)

468

(77)

Somewhat agree

21

(16)

14

(8)

15

(9)

24

(18)

74

(12)

Disagree

18

(13)

12

(7)

18

(11)

19

(14)

67

(11)

FEMALES SUFFERING FROM TB FACE PROBLEM IN MARRIAGE Strongly agree

116

(86)

112

(62)

135

(83)

106

(80)

469

(77)

Disagree

17

(13)

67

(37)

27

(17)

25

(19)

136

(22)

Total

135

(100)

180

(100)

163

(100)

133

(100)

611

67


TABLE 5.7: Health seeking behaviour among opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

HEALTH SEEKING BEHAVIOUR Government health facility

107

(79)

147

(82)

153

(94)

119

(89)

526

(86)

Private clinic

30

(22)

42

(23)

13

(8)

16

(12)

101

(17)

Ayurvedic or Siddha treatment

1

(1)

3

(2)

1

(1)

1

(1)

6

(1)

Government centres

111

(82)

149

(83)

151

(93)

125

(94)

536

(88)

Private hospitals

23

(17)

36

(20)

8

(5)

5

(4)

72

(12)

DOTS/TB centres

17

(13)

26

(14)

15

(9)

7

(5)

65

(11)

Government centres

118

(87)

134

(74)

143

(88)

122

(92)

517

(85)

Private hospitals

16

(12)

34

(19)

7

(4)

4

(3)

61

(10)

DOTS/TB centres

21

(16)

40

(22)

23

(14)

10

(8)

94

(15)

Total

135

(100)

180

(100)

163

(100)

133

(100)

611

TABLE 5.8: Potential practices towards TB patients among opinion leaders interviewed during midline KAP survey, 2013* North

%

East

%

West

%

South

%

Total

%

SHARE A MEAL WITH PERSON YOU KNOW HAD TB Yes

20

(15)

53

(29)

21

(13)

27

(20)

121

(20)

No

110

(81)

118

(66)

141

(87)

80

(60)

449

(73)

IF YOU SUSPECT ONE OF THE FEMALE MEMBER IS SUFFERING FROM TB WILL YOU TAKE HER TO HOSPITAL Yes

128

(95)

179

(99)

151

(93)

124

(93)

582

(95)

No

5

(4)

1

(1)

11

(7)

6

(5)

23

(4)

MARRY ONES DAUGHTER TO A BOY WHO YOU KNOW HAD TB Yes

8

(6)

49

(27)

23

(14)

21

(16)

101

(17)

No

123

(91)

110

(61)

135

(83)

70

(53)

438

(72)

ISOLATE YOUR FAMILY MEMBER HAVING TB FROM THE HOUSEHOLD Yes

46

(34)

23

(13)

27

(17)

10

(8)

106

(17)

No

86

(64)

148

(82)

135

(83)

88

(66)

457

(75)

MARRY ONES SON TO A GIRL WHO YOU KNOW HAD TB Yes

10

(7)

51

(28)

20

(12)

18

(14)

99

(16)

No

121

(90)

104

(58)

141

(87)

83

(62)

449

(73)

SEND ONES DAUGHTER-IN-LAW TO PARENTS HOUSE IF SHE HAD TB Yes

14

(10)

12

(7)

21

(13)

19

(14)

66

(11)

No

117

(87)

155

(86)

140

(86)

89

(67)

501

(82)

* Total percentage does not add up to 100 as ‘not recorded/missing’ values not include in the table.

68


TABLE 5.9: Sources of general and TB related information among opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

SOURCE OF GENERAL INFORMATION* Radio

29

(21)

35

(19)

28

(17)

39

(29)

131

(21)

Television

109

(81)

118

(66)

132

(81)

112

(84)

471

(77)

Newspaper/magazines

86

(64)

93

(52)

81

(50)

71

(53)

331

(54)

Cinema

6

(4)

4

(2)

2

(1)

9

(7)

21

(3)

Hoardings/posters/ leaflets

35

(26)

31

(17)

28

(17)

34

(26)

128

(21)

Melas/nukkad nataks etc

6

(4)

13

(7)

9

(6)

5

(4)

33

(5)

Internet/web advertising

4

(3)

7

(4)

8

(5)

6

(5)

25

(4)

Word of mouth (interpersonal)

66

(49)

84

(47)

64

(39)

39

(29)

253

(41)

Local health service providers

35

(26)

58

(32)

52

(32)

48

(36)

193

(32)

Mobile phone advertising

5

(4)

5

(3)

5

(3)

4

(3)

19

(3)

SOURCE OF INFORMATION FOR AWARENESS OF TB* Television

110

(81)

110

(61)

127

(78)

107

(80)

454

(74)

Radio

23

(17)

35

(19)

20

(12)

30

(23)

108

(18)

Cinema

2

(1)

5

(3)

5

(3)

8

(6)

20

(3)

Newspaper/magazines

80

(59)

75

(42)

62

(38)

71

(53)

288

(47)

Hoarding/posters/ billboards

39

(29)

48

(27)

40

(25)

25

(19)

152

(25)

Internet

5

(4)

3

(2)

2

(1)

1

(1)

11

(2)

Public service announcements

7

(5)

9

(5)

17

(10)

14

(11)

47

(8)

Drama/skit/street play

4

(3)

12

(7)

6

(4)

4

(3)

26

(4)

Hospital/doctor

80

(59)

114

(63)

116

(71)

71

(53)

381

(62)

Friends/relatives

27

(20)

54

(30)

43

(26)

24

(18)

148

(24)

Teachers/peer educators

3

(2)

10

(6)

4

(2)

18

(14)

35

(6)

SEEN/HEARD ADVERTISEMENT REGARDING TB/DOTS Yes

88

(65)

105

(58)

105

(64)

54

(41)

352

(58)

No

39

(29)

65

(36)

49

(30)

71

(53)

224

(37)


8

(6)

10

(6)

9

(6)

8

(6)

35

(6)

WHERE DID YOU SEE/HEAR THE ADVERTISEMENT REGARDING TB/DOTS* Newspaper/magazines

45

(33)

52

(29)

55

(34)

36

(27)

188

(31)

Radio

9

(7)

10

(6)

10

(6)

30

(23)

59

(10)

Television

73

(54)

75

(42)

84

(52)

44

(33)

276

(45)

Hoarding/posters/leaflets

21

(16)

50

(28)

26

(16)

26

(20)

123

(20)

Total

135

(100)

180

(100) 163

(100)

133

(100)

611


69


In spite of having fairly good knowledge about TB transmission and prevention, majority (73%) of the opinion leaders refused to share meals with a person they know had TB. And the situation is the same when it comes to marrying one’s daughter or son to a person they knew had TB. However, the underlying factors of fear of infection due to closeness cannot be ruled out.

Media Practices

The key source of general information among opinion leaders is television (77%) followed by newspaper/magazines (54%) and word of mouth (41%) (Table 5.9). These are the major habits of opinion leaders of getting information. For conveying any information to opinion leaders the above mentioned sources should be considered. However if the information is related to TB, they most often get it from television (74%) followed by hospital or doctors (62%) and newspaper or magazines (47%). This information is very important especially when advocacy programmes for TB control are being designed. Either for general information or TB related information, radio still has around 20% penetration. 58% of the leaders saw or heard advertisements regarding TB or DOTS either in television or newspaper or magazines and posters or hoardings or leaflets. Only 10% got the information through radio.

Summary In summary, almost all the opinion leaders heard about TB, knew that a cough over 2 weeks could be TB, know that TB spreads through air and know that TB was curable. However, the knowledge gap on treatment duration and DOTS needs special attention. Opinion leaders at local level can play a significant role in TB care and control in their communities. Efforts must be made to leverage the strengths of this group for TB control in India. TABLE 5.10: Summary of key indicators of knowledge about TB among opinion leaders interviewed during midline KAP survey, 2013 North

%

East

%

West

(0)

0

%

South

%

Total

%

HEARD OF TB SPONTANEOUS/ON PROBING No

9

(7)

0

(0)

27

(20)

36

(6)

Yes

126

(93)

180

(100) 163

(100)

106

(80)

575

(94)

113

(90)

156

(87)

162

(99)

89

(84)

520

(90)

98

(78)

135

(75)

150

(92)

65

(61)

448

(78)

94

(75)

122

(68)

124

(76)

72

(68)

412

(72)

KEY SYMPTOM OF TB A cough of 2 weeks MODE OF TB TRANSMISSION Through air when infected person coughs or sneezes DIAGNOSIS OF TB Sputum smear test

Contd...

70


North

%

East

%

West

%

South

%

Total

%

119

(94)

171

(95)

155

(95)

91

(86)

536

(93)

67

(53)

105

(58)

116

(71)

57

(54)

345

(60)

117

(93)

167

(93)

140

(86)

92

(87)

516

(90)

63

(50)

93

(52)

113

(69)

40

(38)

309

(54)

115

(85)

161

(89)

158

(97)

106

(80)

540

(88)

(19)

33

(20)

15

(11)

106

(17)

TB IS CURABLE Curable HEARD OF DOTS Heard of DOTS TREATMENT OF TB Allopathic medicines DURATION OF TREATMENT 6-8 months PLACE OF TB TREATMENT Government hospital/PHC/ DOTS centre

TAKE INITIATIVE TOWARDS GENERATING AWARENESS Take initiative towards generating awareness

23

(12)

35

71

Summary Results: Opinion Leaders Demographic Profile

• 69% of the opinion leaders are in the age group 36-46 years • 43% have high school education and one-fourth were graduates and above

• Majority of opinion leaders included village pradhans (16%), panchayat members (12%) ward members (19%) anganwadi workers (18%) and teachers (23%)

Knowledge about TB

97 86

86

38

50 52

54

58

69

71

76 68

75

60

53

17 19 20

40

Place of TB treatment (Goverment hospital/ PHC/DO TS centre)

Duration of treatment is 6-8 months

Heard of DOTS

Aware that TB is

Diagnosis of TB through Sputum smear test

Aware of main symptom (cough of 2 weeks or more)

Heard of TB (spontaneous/probing)

0

Mode of TB transmission through air

13

20

Take initiative towards generating awareness

Percentage

61

68

80

South

90 89

94 95 95

92 78 75

80

84

90 87

93

100

West

East

99

100 100

North

Knowledge of TB • • • • •

94% heard of TB on either probing or spontaneous recall Most opinion leaders are aware of atleast two key TB symptoms: a cough of 2 weeks (90%) and coughing up of blood (57%) 75% of them know that TB is transmitted through the air 93% stated that the PHC or a government hospital or a DMC is the place for diagnosis 93% knew that TB is curable

• Only 60% of opinion leaders heard of DOTs

Attitudes towards TB disease and TB patients 80 70

No Consider TB as a serious disease

68

65

63

Percentage

60

Consider TB is a serious disease in community

50 40

35

37

• Over half (57%) of the opinion leaders 30

30

24

22

20 10 0

North

East

West

South

know that TB was a serious disease • 56% consider smokers more prone to TB followed by those exposed to cough & cold for long time (41%) and alcoholics (40%)

South

60

East

West

North

Treatment of TB patients in the community

53 50

48

47 42

43

41

• Less than one-fifth of the respondents mentioned that TB patients are rejected in their community with least incidents in North (12%) and highest in East (25%) • 46% felt that community mostly helps & supports TB patients • One-third of them said that people are friendly to TB patients but generally avoid them.

Percentage

40

30 25

23

23

23

20 14

12 10

0 Most People reject him/her

Most People are friendly but generally avoid them


Practices towards TB patients & TB Disease North 5%

East

5%

14% 7% 79%

90%

Refer TB patients for treatment

Refer govt hospital

• 87% of opinion leaders refer TB patients

West

Refer private hospital

6%

None/not applicable

4%

to government hospitals.

South

• It is noticeable that 14% in East zone

0%

refer to private hospitals.

6%

90%

94%

80 73

South

70

West East

60

North Percentage

50 40 30 20

40

37

35

34 29

26

24 15

18 13

20

13

20

18 13

13

13

12

10 0

Organised camps

Conclusion

Organised rallies

Organised lecturers/ seminar/workshops


Nukkad nataks/Street Play/Skits

Type of initiatives towards awareness generation • Most of the opinion leaders (83%) didn't take any initiative to create awareness on TB in the community • Only around one-fourth took intitiative in organising camps (15% in West and around 73% in South). • Almost 20% had worked as a DOT provider in the past • Less than 10% showed interest in activities like street plays/ workshops/seminars.

Almost all the opinion leaders who had heard about TB knew that a cough over 2 weeks could be TB, knew that TB spreads through air, knew that TB was curable. This is a highly potential unengaged group, which can play key role in TB control in India.

CHAPTER

6 Results: NGO/CBO Representatives

Demographic Profile The core characteristic of NGO and CBO representatives interviewed is that the bulk of them are female, and about evenly spread in terms of age between the 26-35, 36-45 and 46+ age groups. Most have worked for 5 years or less, and about a fourth had experience of between 6 years and a decade. In terms of the NGO or CBOs area of core focus, there is clear variation by region. NGOs and CBOs in the north focus on TB, rural development, education and disease, while those in the western region focus overwhelmingly on health issues (80%). Sanitation, education and rural development are the core areas of work for those in the south; in the east, NGOs and CBOs focus on sanitation, education and disease-related issues. Very few of the NGOs and CBOs focused on economic (35% work on income generation) or gender issues (5%). Regarding the distribution of the NGO/CBO, unfortunately, in the north zone not many were found during the survey implementation. Hence, this may not be representative of north zone and not comparable with other zones (Table 6.1).

Knowledge about TB Of the NGOs and CBOs interviewed, two thirds had TB on top of their mind in terms of recall. Nearly 90% of the representatives knew a cough of over two weeks as key symptom for TB and that TB transmission is through air (Table 6.2). TABLE 6.1: General profile of NGO/CBO representatives interviewed during midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

(50) (50)

13 12

(52) (48)

5 0

(100) (0)

23 38

(38) (62)

42 51

(45) (55)

(0) (100) (0) (0)

3 10 8 4

(12) (40) (32) (16)

2 2 1 0

(40) (40) (20) (0)

1 14 28 18

(2) (23) (46) (30)

6 28 37 22

(6) (30) (40) (24)

YEARS OF EXPERIENCE OF NGO/CBO 1-5 years 2 (100) 6-10 years 0 (0) 11-15 years 0 (0)

17 1 7

(68) (4) (28)

3 1 1

(60) (20) (20)

31 21 7

(53) (36) (12)

53 23 15

(58) (25) (16)

8

(32)

0

(0)

12

(20)

21

(23)

9 10 10 11

(36) (40) (40) (44)

0 1 2 4

(0) (20) (40) (80)

40 45 46 20

(66) (74) (75) (33)

50 56 59 36

(54) (60) (63) (39)

9 4 25

(36) (16) (100)

0 0 5

(0) (0) (100)

24 1 61

(39) (2) (100)

33 5 93

(35) (5)

GENDER Male Female

1 1

AGE OF THE RESPONDENT 18-25 years 0 26-35 years 2 36-45 years 0 46 years and 0 above

ISSUES ADDRESSED BY NGO/CBO TB specific/DOTS 1 (50) programme Rural development 1 (50) Sanitation 0 (0) Education 1 (50) Other health and 1 (50) disease related Income generation 0 (0) Gender issue 0 (0) Total 2 (100)

74

Chapter 6 Results: NGO/CBO Representatives

TABLE 6.2: Knowledge about TB, symptoms, mode of transmission and diagnosis of TB among NGO/CBO representatives who heard of TB North

%

East

%

West

%

South

%

Total

%

WHAT ARE THE COMMON DISEASES IN YOUR COMMUNITY** TB mentioned

1

(50)

11

(44)

0

(0)

49

(80)

61

(66)

TB not mentioned

1

(50)

14

(56)

5

(100)

11

(18)

31

(33)

Total

2

(100)

25

(100)

5

(100)

60

(100)

92

IF TB IS NOT MENTIONED, HAVE YOU HEARD OF TB?** Yes

1

(50)

13

(52)

5

(100)

10

(16)

29

(31)

No

0

(0)

1

(4)

0

(0)

0

(0)

1

(1)

Not applicable

1

(50)

11

(44)

0

(0)

49

(80)

61

(66)

A cough of 2 weeks

1

(50)

20

(83)

5

(100)

54

(92)

80

(89)

Pain in the chest

0

(0)

13

(54)

1

(20)

49

(83)

63

(70)

Coughing up blood

0

(0)

18

(75)

3

(60)

52

(88)

73

(81)

Night sweat

0

(0)

3

(13)

4

(80)

42

(71)

49

(54)

Weight loss

1

(50)

15

(63)

2

(40)

43

(73)

61

(68)

Loss of appetite

0

(0)

11

(46)

0

(0)

25

(42)

36

(40)

Through air when infected person cough's or sneezes

0

(0)

19

(79)

4

(80)

56

(95)

79

(88)

Through sharing cigarettes/beedis with infected person

0

(0)

8

(33)

0

(0)

47

(80)

55

(61)


1

(50)

9

(38)

1

(20)

6

(10)

17

(19)

Through sharing bed/ clothes with infected person

0

(0)

6

(25)

1

(20)

7

(12)

14

(16)

Through hand shake with infected person

0

(0)

1

(4)

1

(20)

0

(0)

2

(2)

Sputum smear test

2

(100)

24

(100)

4

(80)

46

(78)

76

(84)

X-ray

1

(50)

12

(50)

2

(40)

51

(86)

66

(73)

Mantoux skin test

0

(0)

4

(17)

1

(20)

39

(66)

44

(49)

Blood test

0

(0)

7

(29)

2

(40)

44

(75)

53

(59)

Don’t know/can’t say

0

(0)

0

(0)

0

(0)

2

(3)

2

(2)

Government hospital/PHC/ DOTS centre

2

(100)

23

(96)

5

(100)

56

(95)

86

(96)


0

(0)

9

(38)

2

(40)

3

(5)

14

(16)

Total

2

(100)

24

(100)

5

(100)

59

(100)

90

SYMPTOMS OF TB*

MODE OF TB TRANSMISSION*

DIAGNOSIS OF TB*

PLACE OF TB DIAGNOSIS*

* Multiple response question ** Percentages do not add up to 100 as ‘not recorded/missing’ values not included in the table 75


More than 80% know that TB can be diagnosed by the sputum smear test. However, there are disturbingly high levels of misperception of the efficacy of blood tests to detect TB amongst the respondents, especially in the south (75% of NGOs in the south think that a blood test can help diagnose TB).

Knowledge about TB Treatment The overall portrait that emerges from this survey is this. The NGOs and CBOs knowledge about TB is somewhat bleak. While most representatives think that TB is curable (94% all India), it is striking to note that they appear to think that this can be achieved through home remedies or Ayurveda (in the north) (Table 6.3). Perhaps this is due to the small sample of NGO representatives interviewed (N=94). A strikingly low number of NGO representatives know about DOTS – 34%, but the bulk of these are in the south or the east, with only 1 representative in the north and the south stating that the DOTS course could cure TB. Most do know that TB can be treated at a government facility and most have heard of DOTS. The prescriptive lesson that clearly emerges by taking a panoramic view of this data is somewhat as follows. Working carefully with NGOs, health service providers and opinion leaders would best commence by starting with the basics and reinforcing the need to diagnose TB accurately, initiate treatment rapidly and also inform all of the above about the risks of MDR TB in the event of incomplete treatment. TABLE 6.3: NGO/CBO representatives knowledge about treatment of TB among those who heard of TB North

%

East

%

West

%

South

%

Total

%

(92)

5

(100)

56

(95)

85

(94)

ACCORDING TO YOU WHETHER TB IS CURABLE Fully Curable

2

(100)

22

TREATMENT OF TB* Home remedies

1

(50)

5

(21)

4

(80)

0

(0)

10

(11)

DOTS or TB drugs

0

(0)

15

(63)

1

(20)

18

(31)

34

(38)

Other allopathic medicines

0

(0)

7

(29)

0

(0)

54

(92)

61

(68)

Ayurvedic

1

(50)

0

(0)

0

(0)

0

(0)

1

(1)

Less than 2 weeks

0

(0)

0

(0)

0

(0)

1

(2)

1

(1)

1-5 months

0

(0)

0

(0)

1

(20)

1

(2)

2

(2)

6-8 months

2

(100)

14

(58)

4

(80)

9

(15)

29

(32)


0

(0)

6

(25)

0

(0)

43

(73)

49

(54)

Don't Know/cant Say

0

(0)

4

(17)

0

(0)

3

(5)

7

(8)


2

(100)

19

(79)

5

(100)

55

(93)

81

(90)


0

(0)

2

(8)

1

(20)

2

(3)

5

(6)


t PLACE OF TB TREATMENT

Contd...

74


North

%

East

%

West

%

South

%

Total

%

HEARD OF DOTS Yes

1

(50)

16

(67)

5

(100)

54

(92)

76

(84)

No

1

(50)

8

(33)

0

(0)

2

(3)

11

(12)


1

(50)

11

(46)

5

(100)

53

(90)

70

(78)

Total

2

(100)

24

(100)

5

(100)

59

(100)

90

PLACE OF DOTS


Role in TB Care and Control NGOs and CBOs are key stakeholders who work close to those TB patients residing in the community. They contribute significantly in raising awareness about diseases including TB and can significantly contribute to TB case detection, improving treatment and care services. However, the present study revealed that NGOs/CBOs taking initiatives in raising awareness on TB is minimal (37%) (Table 6.4). Amongst those who took initiatives, one third of them organised health camps to generate awareness on an average. Almost half of them in the north organised health camps for generating TB awareness. Other initiatives like organising rallies, lectures, seminar, workshops, working as a DOT provider are minimal. Almost 90% of these organisations had actually carried activities for spreading messages, educating communities on TB prevention and treatment. More than two third of these organisation have provided community-based TB care and have worked for reducing stigma and discrimination. Only one third of these organisations carried training of health care workers and volunteers, helped in the resettlement of TB patients, motivated TB patients to get treated under DOTS and spread messages about DOTS. The present study showed gaps in the knowledge on the general population, TB patients opinion leaders which can be filled by adequate involvement of these NGOs/CBOs. Most organisations (74%) are also not aware that they have schemes to collaborate with RNTCP (74%) and a low number of these are involved in such schemes (only 5 out of 13, 38%) like advocacy communication and social mobilisation and sputum collection & transportation (4 out of 5). The level of awareness of these organisations on such schemes seemed low, hence awareness should be generated among NGO/CBO representatives so that they collaborate with RNTCP through specific schemes and engage in TB care and control. Almost all are still willing to work for TB control (84%) and collaborate with the RNTCP (70%). If adequately involved in RNTCP, they can bridge the gap in accessing diagnosis in the marginalised and vulnerable communities.

75


TABLE 6.4: Role played by NGO/CBO representatives in their communities to address TB North

%

East

%

West

%

South

%

Total

%

TAKEN INITIATIVES IN GENERATING AWARENESS ON TB/DOTS Taken initiatives in generating awareness on TB/DOTS

1

(50)

11

(44)

2

(40)

20

(33)

34

(37)

No

1

(50)

14

(56)

3

(60)

40

(66)

58

(62)

TYPE OF INITIATIVES* Organised camps

1

(100)

7

(64)

2

(100)

17

(85)

27

(79)

Organised rallies

0

(0)

2

(18)

0

(0)

1

(5)

3

(9)

Organised lectures/ Seminars/Workshops

0

(0)

8

(73)

0

(0)

1

(5)

9

(26)


0

(0)

2

(18)

0

(0)

2

(10)

4

(12)

Nukkad nataks/street plays/skits

0

(0)

1

(9)

0

(0)

1

(5)

2

(6)

Total

1

(50)

11

(44)

2

(40)

20

(33)

34

(37)

DOES YOUR ORGANISATION WORK FOR TUBERCULOSIS CONTROL Missing

0

(0)

0

(0)

0

(0)

1

(2)

1

(1)

Yes

1

(50)

9

(36)

1

(20)

18

(30)

29

(31)

No

1

(50)

16

(64)

4

(80)

42

(69)

63

(68)

TYPE OF ACTIVITIES UNDERTAKEN FOR TB CONTROL* Spreading awareness about TB, educating communities on its prevention and treatment

1

(100)

7

(78)

1

(100)

17

(94)

26

(90)

Provide community based care to TB patients

0

(0)

5

(56)

1

(100)

17

(94)

23

(79)

Training to TB care health workers and volunteer

0

(0)

3

(33)

1

(100)

7

(39)

11

(38)

Help in reducing stigma and discrimination form the community on TB

1

(100)

6

(67)

0

(0)

14

(78)

21

(72)

Help resettlement of TB patients

0

(0)

2

(22)

1

(100)

6

(33)

9

(31)

Motivating TB patients to treat under DOTS programme

1

(100)

6

(67)

0

(0)

4

(22)

11

(38)

Spreading awareness about DOTS

1

(100)

6

(67)

0

(0)

1

(6)

8

(28)

As DOT provider

0

(0)

2

(22)

0

(0)

0

(0)

2

(7)

Total

1

(100)

9

(100)

1

(100)

18

(100)

29

Contd...

76


North

%

East

%

West

%

South

%

Total

%

AWARE OF SCHEMES TO COLLABORATE WITH RNTCP Yes

1

(50)

7

(28)

1

(20)

4

(7)

13

(14)

No

0

(0)

14

(56)

4

(80)

51

(84)

69

(74)

Not recorded

1

(50)

4

(16)

0

(0)

6

(10)

11

(12)

Total

2

(100)

25

(100)

5

(100)

61

(100)

93

INVOLVED IN SCHEMES WITH RNTCP IN TB CONTROL Yes

0

(0)

4

(57)

1

(100)

0

(0)

5

(38)

No

1

(100)

3

(43)

0

(0)

4

(100)

8

(62)

Total

1

(100)

7

(100)

1

(100)

4

(100)

13

TYPE OF SCHEMES WHERE NGO/CBO ARE INVOLVED Advocacy, Communications and Social Mobilisation

-

-

1

(25)

1

(100)

-

-

2

(40)

Sputum Collection Scheme

-

-

2

(50)

0

(0)

-

-

2

(40)

Designated microscopy centres

-

-

1

(25)

0

(0)

-

-

1

(20)

Total

-

-

4

(100)

1

(100)

-

-

5

WILLINGNESS TO WORK ON TB CONTROL Willingness to work on TB control

0

(0)

9

(56)

3

(75)

42

(98)

54

(84)

No

1

(100)

5

(31)

1

(25)

1

(2)

8

(13)

Not recorded

0

(0)

2

(13)

0

(0)

0

(0)

2

(3)

Total

1

(100)

16

(100)

4

(100)

43

(100)

64

WILLINGNESS TO COLLABORATE WITH RNTCP Willingness to collaborate with RNTCP

1

(50)

18

(72)

2

(40)

44

(72)

65

(70)

No

1

(50)

7

(28)

3

(60)

17

(28)

28

(30)

Total

2

(100)

25

(100)

5

(100)

61

(100)

93


77


Seriousness of TB, Risk Groups for TB and Community’s Behaviour towards TB Patients

On average, NGOs and CBOs perceive that TB is not a serious disease in the community (83%) (Table 6.5). Most of the representatives from south zones did not think TB is a serious disease. However, almost half of the organisations from the east zones perceive TB as a serious disease. The organisations, who perceive TB is not a serious disease, might have less knowledge on the severity of the disease and the danger to the community. On an average, more than half of NGOs are clear that smokers, alcoholics and HIV positive people are prone to TB. It is striking that organisations in west zone do not think that alcoholics are prone to TB. There are many high risk groups like migrant and tribal populations in the west zone, hence it becomes essential that NGO/CBO representatives in the west zone be made adequately aware on the risk factors for TB disease and treatment. Over 80% of the NGO/CBO representatives in south zone perceive that alcoholics and smokers are prone to TB and one third perceive that HIV infected people are prone to TB. This could be due to higher education level of people representing the organisations which simultaneously correlates with the higher level of education among general population in the south. In the communities where these organisations are working, over 50% of TB patients are well supported by the community and only less than 20% responded that TB patients are rejected and people are not friendly with them. Though at lower levels, stigma and discrimination towards TB patients still exists. TABLE 6.5: Attitudes towards TB disease and TB patients among NGO/CBO representatives who heard of TB interviewed in the midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

DO YOU THINK TB IS A SERIOUS DISEASE IN YOUR COMMUNITY Yes

0

(0)

11

(46)

1

(20)

4

(7)

16

(18)

Those living in unhygienic conditions

1

(50)

11

(46)

3

(60)

18

(31)

33

(37)

Poor people

0

(0)

1

(4)

0

(0)

0

(0)

1

(1)

Malnourished

1

(50)

10

(42)

2

(40)

2

(3)

15

(17)

Children

0

(0)

1

(4)

0

(0)

12

(20)

13

(14)

Women

0

(0)

1

(4)

0

(0)

11

(19)

12

(13)

WHO ARE PRONE TO TB*

Family members of TB

1

(50)

6

(25)

4

(80)

11

(19)

22

(24)

Exposed to cough and clod for long time

0

(0)

3

(13)

0

(0)

15

(25)

18

(20)

HIV +ve

0

(0)

11

(46)

1

(20)

19

(32)

31

(34)

Smokers

1

(50)

14

(58)

1

(20)

47

(80)

63

(70)

Alcoholics

0

(0)

11

(46)

0

(0)

48

(81)

59

(66)

Total

2

(100)

24

(100)

5

(100)

59

(100)

90

IN YOUR COMMUNITY, HOW IS THE PERSON SUFFERING FROM TB Most people reject him/ her

0

(0)

6

(24)

4

(80)

7

(11)

17

(18)


2

(100)

6

(24)

1

(20)

6

(10)

15

(16)


0

(0)

13

(52)

0

(0)

37

(61)

50

(54)

Total

2

(100)

25

(100)

5

(100)

60

(100)

90

* Multiple response question 78


Attitudes towards TB Patients and their Families The NGOs and CBOs responded that TB patients should be allowed to attend all social functions showing a positive attitude towards them. In south zone almost 92% of the representatives had positive attitude (Table 6.6). Almost all representatives strongly disagree that married female TB patients should be sent to their parent’s house. They also think that children with TB should be allowed to go to school (85%) and over 80% of the organisations think that daily wage labourers should be allowed to work. TABLE 6.6: Attitudes towards TB patients and their families among NGO/CBO representatives interviewed in the midline KAP survey, 2013 Attitude towards TB Patients

North

%

East

%

West

%

South

%

Total

%

A FAMILY WITH TB PATIENT SHOULD NOT BE ALLOWED TO PARTICIPATE IN ANY SOCIAL FUNCTION Strongly agree

0

(0)

3

(12)

2

(40)

0

(0)

5

(5)

Somewhat agree

1

(50)

2

(8)

0

(0)

5

(8)

8

(9)

Disagree

1

(50)

20

(80)

3

(60)

56

(92)

80

(86)

MARRIED FEMALE TB PATIENT SHOULD BE SENT OFF TO HER PARENT’S HOUSE Somewhat agree

0

(0)

1

(4)

0

(0)

4

(7)

5

(5)

Disagree

2

(100)

24

(96)

5

(100)

57

(93)

88

(95)


0

(0)

2

(8)

1

(20)

1

(2)

4

(4)

Somewhat agree

0

(0)

7

(28)

1

(20)

2

(3)

10

(11)

Disagree

2

(100)

16

(64)

3

(60)

58

(95)

79

(85)

DAILY WAGE LABOURERS SUFFERING FROM TB SHOULD NOT BE ALLOWED TO WORK Strongly agree

0

(0)

2

(8)

1

(20)

3

(5)

6

(6)

Somewhat agree

1

(50)

10

(40)

0

(0)

1

(2)

12

(13)

Disagree

1

(50)

13

(52)

4

(80)

57

(93)

75

(81)

HUSBANDS/IN-LAWS DO NOT ACCOMPANY FEMALE TB PATIENTS TO HOSPITAL/DOTS CENTRE Strongly agree

0

(0)

3

(12)

0

(0)

0

(0)

3

(3)

Somewhat agree

0

(0)

6

(24)

0

(0)

8

(13)

14

(15)

Disagree

2

(100)

16

(64)

5

(100)

53

(87)

76

(82)

FEMALES ACCOMPANY THEIR SPOUSE SUFFERING FROM TB TO HOSPITALS/DOTS CENTRE Strongly agree

2

(100)

16

(64)

3

(60)

40

(66)

61

(66)

Somewhat agree

0

(0)

5

(20)

0

(0)

11

(18)

16

(17)

Disagree

0

(0)

4

(16)

2

(40)

10

(16)

16

(17)

FEMALES SUFFERING FROM TB FACE PROBLEM IN MARRIAGE Strongly agree

1

(50)

14

(56)

2

(40)

48

(79)

65

(70)

Disagree

1

(50)

11

(44)

3

(60)

13

(21)

28

(30)

Total

2

(100)

25

(100)

5

(100)

61

(100)

93

79


More than 60% of the representatives responded that TB patients are taken to the hospital/DOTS centre by their spouse/in-laws across all zones. In the society where these organisations work, female TB patients do face marital problems (70%). It is highly encouraging to observe that the representatives from the local NGOs/CBOs have positive attitude towards the TB patients. They could play a significant role in the community in reducing stigma and discrimination towards TB patients. They can also contribute in generating awareness about TB among different stakeholders in the community. RNTCP has a wonderful opportunity to utilise these organisations and bridge gaps in the knowledge about TB, attitudes and practices towards TB patients among general population and other stakeholders in the community.

Health Seeking Behaviour

The general health seeking behaviour of NGO/CBO representatives is to go to government hospital for any sickness. In case of presumptive or confirmed TB, the representatives suggest the individuals to seek health care at government health centres (Table 6.7).

Potential Practices towards TB Patients

Only one –fifth of the representatives were willing to share meals with TB patients. And again only one-fifth of the representatives are willing to give their sons/daughter in marriage to individuals who had TB (Table 6.8). Responses to sharing meals or giving sons/daughters in marriage to those who had TB are observed to be similar among general population, opinion leaders and NGO/CBO representatives. There is a possibility that whether one has right knowledge about TB or not, response to these situations is similar. Examining the reasons behind these possible practices needs a well-planned qualitative study to explore and understand in local context. This also suggests the inclusion of community members in TB care and control to bring change in individuals thought processes. TABLE 6.7: General health seeking behaviour among NGO/CBO representatives interviewed during midline KAP survey, 2013 Health Seeking Behaviour

North

%

East

%

West

%

South

%

Total

%

WHEN SOMEONE FALLS SICK, WHERE WILL YOU GENERALLY GO? Government health facility

2

(100)

20

(80)

4

(80)

39

(64)

65

(70)

Private clinic

0

(0)

5

(20)

1

(20)

21

(34)

27

(29)

Clinic run by NGO

0

(0)

0

(0)

0

(0)

1

(2)

1

(1)

IF A PERSON WITH SYMPTOMS LIKE TB, WHERE ACCORDING TO YOU SHOULD YOU GO? Government centres

1

(50)

18

(72)

5

(100)

58

(95)

82

(88)

Private hospitals

0

(0)

4

(16)

0

(0)

0

(0)

4

(4)

DOTS/TB centres

1

(50)

3

(12)

0

(0)

1

(2)

5

(5)

IF A PERSON IS DIAGNOSED WITH TB, WHERE ACCORDING TO YOU SHOULD YOU GO?* Government centres

1

(50)

16

(64)

4

(80)

58

(95)

79

(85)

Private hospitals

0

(0)

7

(28)

3

(60)

0

(0)

10

(11)

DOTS/TB centres

1

(50)

11

(44)

1

(20)

5

(8)

18

(19)

Total

2

(100)

25

(100)

5

(100)

61

(100)

93


80


TABLE 6.8: Potential practices towards TB patients by NGO/CBO representatives among those interviewed in midline KAP survey, 2013 North % East SHARE A MEAL WITH PERSON YOU KNOW HAD TB Yes No Don’t know/Cant say

0 2 0

(0) (100) (0)

12 10 3

%

West

%

South

%

Total

%

(48) (40) (12)

0 5 0

(0) (100) (0)

6 51 4

(10) (84) (7)

18 68 7

(19) (73) (8)

IF YOU SUSPECT ONE OF THE FEMALE MEMBER IS SUFFERING FROM TB, DO YOU TAKE HER TO HOSPITAL Yes No Don’t know/Cant say

2 0 0

(100) (0) (0)

24 1 0

(96) (4) (0)

5 0 0

(100) (0) (0)

57 3 1

(93) (5) (2)

88 4 1

(95) (4) (1)

1 4 0

(20) (80) (0)

5 51 5

(8) (84) (8)

18 66 9

(19) (71) (10)

MARRY ONES DAUGHTER/SON TO A PERSON KNOWING HAD TB Yes No Don’t know/Cant say

1 1 0

(50) (50) (0)

11 10 4

(44) (40) (16)

ISOLATE YOUR FAMILY MEMBER HAVING TB FROM THE HOUSEHOLD Yes

1

(50)

1

(4)

0

(0)

3

(5)

5

(5)

No

1

(50)

22

(88)

5

(100)

43

(70)

71

(76)

Don’t know/Cant say

0

(0)

2

(8)

0

(0)

15

(25)

17

(18)

SEND ONES DAUGHTER-IN-LAW TO PARENT’S HOUSE IF SHE HAD TB IN ORDER TO PROTECT OTHER MEMBERS OF FAMILY Yes 1 (50) 0 (0) 0 (0) 5 (8) 6 No 1 (50) 23 (92) 5 (100) 47 (77) 76

(6) (82)

Don’t know/Cant say

0

(0)

2

(8)

0

(0)

9

(15)

11

(12)

Total

2

(100)

25

(100)

5

(100)

61

(100)

93

Practices in Media behaviour

Television continues to be the key source of general or TB-related information across all the groups including NGO/CBO representatives. Interestingly in this group, radio also seemed to be a significant source of information (39%) along with hoardings/posters/leaflets (59%) (Table 6.9). 81% of the survey respondents had seen/heard advertisement on TB/DOTS. The source where they heard about TB is television, followed by newspapers or magazines and hoardings/leaflets. TABLE 6.9: Source of general and TB related information among NGO/CBO representatives interviewed in midline KAP survey, 2013 (All are multiple response questions) North

%

East

%

West

%

South

%

Total

%

SOURCE OF GENERAL INFORMATION* Cinema

0

(0)

0

(0)

0

(0)

9

(15)

9

(10)

Hoardings/posters/ leaflets

1

(50)

9

(36)

3

(60)

42

(69)

55

(59)

Internet/web advertising

0

(0)

3

(12)

0

(0)

7

(11)

10

(11)

Local health service providers

0

(0)

10

(40)

1

(20)

16

(26)

27

(29)

Melas/nukkad nataks etc

0

(0)

3

(12)

0

(0)

2

(3)

5

(5)

Mobile phone advertising

0

(0)

0

(0)

0

(0)

1

(2)

1

(1)

Newspaper/magazines

1

(50)

11

(44)

4

(80)

50

(82)

66

(71)

Contd...

81


North

%

East

%

West

%

South

%

Total

%

Radio

0

(0)

5

(20)

2

(40)

29

(48)

36

(39)

Television

2

(100)

17

(68)

4

(80)

56

(92)

79

(85)

Word of mouth (interpersonal)

1

(50)

13

(52)

1

(20)

13

(21)

28

(30)

SOURCE OF INFORMATION FOR AWARENESS OF TB* Cinema

0

(0)

1

(4)

0

(0)

7

(11)

8

(9)


0

(0)

1

(4)

2

(40)

8

(13)

11

(12)

Friends/relatives

0

(0)

3

(12)

1

(20)

4

(7)

8

(9)


0

(0)

8

(32)

4

(80)

16

(26)

28

(30)

Hospital/doctor

1

(50)

11

(44)

1

(20)

21

(34)

34

(37)

Newspaper/magazines

1

(50)

5

(20)

4

(80)

50

(82)

60

(65)


0

(0)

0

(0)

1

(20)

7

(11)

8

(9)

Radio

0

(0)

3

(12)

3

(60)

14

(23)

20

(22)


0

(0)

1

(4)

1

(20)

9

(15)

11

(12)

Television

2

(100)

10

(40)

5

(100)

54

(89)

71

(76)

SEEN/HEARD ADVERTISEMENT REGARDING TB/DOTS Yes

2

(100)

18

(72)

5

(100)

50

(82)

75

(81)

No

0

(0)

5

(20)

0

(0)

10

(16)

15

(16)


0

(0)

2

(8)

0

(0)

0

(0)

2

(2)

WHERE DID YOU SEE/HEARD THE ADVERTISEMENT REGARDING TB/DOTS* Newspaper/magazines

0

(0)

7

(28)

1

(20)

45

(74)

53

(57)

Radio

0

(0)

2

(8)

1

(20)

8

(13)

11

(12)

Television

2

(100)

10

(40)

5

(100)

47

(77)

64

(69)

Hoarding/posters/leaflets

1

(50)

12

(48)

3

(60)

36

(59)

52

(56)

PREFERRED SOURCE OF INFORMATION FOR AWARENESS OF TB* Cinema

0

(0)

0

(0)

0

(0)

6

(10)

6

(6)


0

(0)

1

(4)

0

(0)

7

(11)

8

(9)

Friends/relatives

1

(50)

0

(0)

0

(0)

4

(7)

5

(5)


0

(0)

2

(8)

2

(40)

21

(34)

25

(27)

Hospital/doctor

1

(50)

8

(32)

2

(40)

25

(41)

36

(39)

Internet

1

(50)

1

(4)

0

(0)

6

(10)

8

(9)

Newspaper/magazines

0

(0)

3

(12)

1

(20)

51

(84)

55

(59)


0

(0)

0

(0)

0

(0)

10

(16)

10

(11)

Radio

0

(0)

1

(4)

0

(0)

17

(28)

18

(19)


0

(0)

1

(4)

0

(0)

14

(23)

15

(16)

Television

0

(0)

8

(32)

2

(40)

52

(85)

62

(67)

Total

2

(100)

25

(100)

5

(100)

61

(100)

93


82


Summary In general, NGO/CBO representatives in all the zones (except north) have knowledge about TB symptoms and transmission however there is lack of knowledge in treatment duration especially in the south (only 15% knew correct duration). This trend was observed in opinion leaders as well. The duration of treatment is long and if a patient does not complete the treatment, he will be at high risk of developing MDR-TB. Hence it is important that the stakeholders in a community know the right facts about TB care and control. TABLE 6.10: Summary of key indicators of knowledge about TB among NGO/CBO representatives interviewed in midline KAP survey, 2013 North

%

East

%

West

%

South

%

Total

%

(44)

0

(0)

49

(80)

61

(66)

13

(52)

5

(100)

10

(16)

29

(31)

WHAT ARE THE COMMON DISEASES IN YOUR COMMUNITY? TB mentioned

1

(50)

11

IF TB IS NOT MENTIONED, HAVE YOU HEARD OF TB? Yes

1

(50)

HEARD OF TB SPONTANEOUS/ON PROBING Yes

2

(100)

24

(96)

5

(100)

59

(97)

90

(97)

1

(50)

20

(83)

5

(100)

54

(92)

80

(89)

0

(0)

19

(79)

4

(80)

56

(95)

79

(88)

2

(100)

24

(100)

4

(80)

46

(78)

76

(84)

SYMPTOMS OF TB A cough of 2 weeks MODE OF TB TRANSMISSION Through air when infected person coughs or sneezes DIAGNOSIS OF TB Sputum smear test

ACCORDING TO YOU WHETHER TB IS CURABLE Fully curable

2

(100)

22

(92)

5

(100)

56

(95)

85

(94)

Partially curable

0

(0)

2

(8)

0

(0)

1

(2)

3

(3)

1

(50)

16

(67)

5

(100)

54

(92)

76

(84)

0

(0)

19

(79)

1

(20)

57

(97)

77

(86)

2

(100)

14

(58)

4

(80)

9

(15)

29

(32)


2

(100)

19

(79)

5

(100)

55

(93)

81

(90)

Taken initiatives in generating awareness on TB/DOTS

1

(50)

11

(44)

2

(40)

20

(33)

34

(37)

HEARD OF DOTS Heard of DOTS TREATMENT OF TB Allopathic medicines DURATION OF TREATMENT 6-8 months PLACE OF TB TREATMENT

83

Summary Results: NGO/CBO Representatives Demographic Profile • 55% NGO and CBO representatives interviewed were female • Most have worked for 5 years or less (58%) years • The core focus area varies from TB, rural development & education in North, health issues in West, sanitation, education & rural development in South and East • Very few of the NGOs and CBOs focused on economic (35% work on income generation) or gender issues (5%)

Knowledge about TB North 100

100

100 97 96

95

100 100

100 92

79 80

80

100

100

95

97

92

80 78

East 100

80

79

West 100

South 100 93 79

Percentage

67 58

60 50 40 20

20

0

0 Heard of TB Mode of TB (spontaneous/ transmission on probing) through

Diagnosis of TB (sputum smear test)

Fully curability of TB

Heard of DOTS

0 Treatment Duration Place of TB of TB of treatment treatment using allopathic (6-8 months) (Goverment medicines hospital/PHC /DOTS centre)

Knowledge about TB among NGO/CBO representatives • • • • • •

Close to all the respondents heard of TB as either spontaneous recall or on probing Nearly 90% of the representatives knew a cough of over two weeks as key symptom for TB 88% knew that transmission of TB is through air More than 80% know that TB can be diagnosed by the sputum smear test 84% were aware of DOTS Most respondents think that TB is curable (94%)

Attitudes towards TB disease and TB patients East

Family of TB patients should not be allowed to participant in social functions

20%

Attitudes towards TB patients 80%

Agree Disagree South

West

8% 40% 60% 92%

• Majority (86%) said family of TB patients should be allowed to participate in social functions. • 70% strongly agree that female suffering from TB free problem in marriage. • 18% agree that husband/in-laws do not accompany female TB patient to hospital.

East 19%

Most people are friendly but generally aavoid them

40% 41%

Treatment of person suffering from TB in the community

Most people reject him/her

South

West

12%

20%

• 54% said community mostly helps supports TB patient


• Nearly one fifth (18%) said most people reject TB patients

14% 80%

74%

East

48%

Daily wage labourers suffering from TB should not be allowed to work

52%

• Majority of the respondents (overall 81%) were of opinion that daily wage labourers should not be stopped from their routine work/employment

Agree West

Disagree

South

• 40% of respondents in East are in favour of disallowing wage labourers suffering from TB from their work

7%

20%

• With proper awareness initiatives, precautions and treatment, these challenges could be overtaken and NGO/ CBOs can play a decisive role here.

93%

80%

Practices towards TB patients & TB Disease Practices towards TB patients North

West

East

• Only one fifth TB (19%) said they will share a meal with a person they know had TB

South

120

100

100

Percentage

• 95% said they will take a female member of the family suffering from TB like symtoms to hospital

85

80

60

100

73 64

• Only one fifth (19%) will get their sons/ daughters married to a person who they know had TB

40

0

0 Organised camps

0

Initiatives taken

18

18

20

5

Organised rallies

10

5 0

0

Organised lectures/ Seminars/Workshops

0

0

Worked as DOT pro

9 0

5 0

Nukkad natak/ street plays/skits

• Only 37% undertook initiatives to generate awareness of TB/DOTS • Of these 79% organised camps, 26% organised lectures of seminars.

Conclusion • Overall, though there is reasonably good knowledge about TB symptoms and transmissions, there is a huge gap in knowledge of treatment duration. • Focus on equipping NGO/CBO representatives with correct knowledge about TB is the need of the hour.

CHAPTER

7

Comparison of KAP About TB among Target Groups in Baseline and Midline Surveys

General Population The key knowledge indicators were compared between baseline and midline surveys to measure the change in knowledge about TB among the general population. A significant increase was observed from baseline to midline in proportions of general population who had heard of TB, who knew that cough of over 2 weeks is key symptom for TB, who knew that TB is transmitted through air, who had the knowledge that TB can be diagnosed by sputum examination and who knew that the treatment duration for TB is 6-8months (Table 7.1). There was no change in the proportion of those who knew TB was curable and those who had heard of DOTS. The level of knowledge about TB was also compared among those who had correct knowledge and those who had partial knowledge. All those individuals who had heard of TB, knew cough of over 2 weeks could be TB, knew TB is curable, and had heard of DOTS were identified as having correct knowledge. All those were aware of any one of the parameters were identified as those having partial knowledge about TB. In baseline survey, 18% of the total general population interviewed had correct knowledge. In midline survey, the proportion of those with correct knowledge increased to 32%, and is statistically significant (p 2 weeks is TB

2843 (62)

61-64

3443 (72)

70-73

Having knowledge that TB is transmitted through air

2283 (50)

49-51

3008 (63)

61-64

Having knowledge that TB can be diagnosed by sputum examination

2515 (55)

54-57

2778 (58)

56-59

Having knowledge that TB is curable

3346 (73)

72-75

3526 (73)

72-75

Having knowledge that the duration of TB treatment is 6-8 months

1724 (38)

36-39

2044 (43)

41-44

Have heard of DOTS

1059 (23)

22-24

1094 (23)

22-24

Know that TB treatment is free under DOTS

849 (19)

18-20

961 (20)

19-21

1535 (32)

31-33

OVERALL CORRECT KNOWLEDGE ABOUT TB Correct knowledge

819 (18)

86

17-19

Chapter 7 Comparison of KAP About TB among Target Groups in Baseline and Midline Surveys

TB Patients

A total of 609 patients were identified in baseline survey and 496 patients were identified in midline survey. The proportion of male TB patients slightly decreased, proportion of those who were illiterate considerably decreased from 43% in baseline to 34% in midline and proportion of patients with monthly income less than Rs.2000 decreased from 35% in baseline to only 15% in midline survey. This is consistent with the shift in standard of living index and the household assets of the group. Regarding knowledge indicators, the proportion of patients who knew that TB is caused due to germs or microorganisms increased from 33% in baseline to 44% in midline. There was no difference in the proportion of patients who heard of free diagnosis and treatment. However there was a considerable increase in proportion of those who got diagnosed in government facility (60% in baseline and 68% in midline) and in those receiving treatment freely under DOTS (53% in baseline and 59% in midline). The proportion of patients who visited two providers or less for diagnosis of TB increased significantly from 67% in baseline to 81% in midline survey. This is a significant change which has implications on reduction in delay in diagnosis and out of pocket expenditure. The proportion patients who were diagnosed within 1 month of onset of symptoms also increased from 74% in baseline to 81% in midline. TABLE 7.2: Key indicators of knowledge about TB among TB patients in the midline KAP survey compared with baseline KAP survey across the 30 districts from 15 states in India Characteristics

Baseline

Midline

N=609

N=496

Total number of TB patients

N (%)

95% CI

N (%)

95% CI

TB patients who were male

389 (64)

60-68

302 (61)

57-65

TB patients who were illiterate

264 (43)

39-47

167 (34)

30-38

TB patients with household monthly income less than Rs. 2000

212 (35)

31-39

75 (15)

12-19

Aware that TB is caused by micro-organisms

201 (33)

29-37

219 (44)

40-49

Heard of free diagnosis and treatment of TB

426 (70)

66-73

351 (71)

67-75

Underwent diagnosis in a government health facility

366 (60)

56-64

337 (68)

64-72

No. of TB patients who visited two providers or less for the diagnosis of TB

411 (67)

64-71

400 (81)

77-84

TB patients diagnosed within 1 month of the onset of symptoms

448 (74)

70-77

401 (81)

77-84

Proportion of TB patients initiated on treatment within 7 days of diagnosis

418 (69)

65-72

233 (47)

43-51

TB patients aware that treatment has to be taken regularly

488 (80)

77-83

378 (76)

72-80

TB patients aware that the duration of treatment is for 6-8 months

356 (58)

55-62

275 (55)

51-60

TB patients receiving treatment free of cost under DOTS

324 (53)

49-57

295 (59)

55-64

87


The indicators regarding treatment initiation have shown a decrease which is a matter of concern. In midline survey, it was observed that though 81% were diagnosed within one month of onset of symptoms, only 47% were initiated on treatment within 7 days of diagnosis. There was no difference the treatment initiation time between those who are taking treatment freely under DOTS or those paying for their treatment. In the baseline survey, 74% were diagnosed within one month and 69% were initiated on treatment within 7 days. When compared, the situation became worse in 2 years. There is an urgency to establish the reasons for the delay in treatment initiation and implement interventions to prevent such provider and patient related delays. Another important issue that needs immediate attention is patient’s knowledge regarding treatment duration and regularity. In baseline survey 80% of the patients knew that treatment has to be taken regularly however in midline this proportion reduced to 76% and those who knew the correct duration of treatment (6-8 months) decreased from 58% in baseline to 55% in the midline. Though it may seem as marginal decrease, the lack of knowledge regarding treatment regularity and duration could lead to non-adherence to treatment, irregularity and loss to follow up contributing to increased risk of developing drug resistance.

Health Service Provider A total of 614 providers in baseline and 523 providers in midline were interviewed. However, as there was a significant difference in the profile of the providers, both the groups are not comparable.

Opinion Leaders A total of 511 opinion leaders were interviewed in baseline survey and 611 were interviewed in the midline survey. Though higher proportion of leaders recalled hearing about TB in midline survey (22% in baseline and 31% midline), overall proportion who heard of TB in midline survey (94%) was less than that in baseline survey (100%) (Table 7.3). More number of opinion leaders were aware that cough of over 2 weeks is key symptom for TB in midline (88%) than in baseline (78%) and know that treatment of TB is through allopathic medicines in midline (86%) than in baseline (71%). However for all the other key indicators like transmission of TB through air, sputum test for TB diagnosis, and duration of TB treatment there was a decrease in proportions (Table 7.3). This pattern shows that though there seems an increase in knowledge on some key facts about TB still there is a lack of awareness on many other key facts. The awareness programmes whether through group discussions, sensitisation programmes or through media (radio/television or print media) are not providing holistic knowledge about TB. Opinion leaders are an important group of people who have influence over their communities and if we are not able to reach them with correct knowledge of TB in a holistic manner, we are failing at an important task of protecting our communities from the effects of lack of knowledge. There is a need to focus on this group and involve in them in TB control programme actively. It is observed that the proportion of leaders who played a role in TB awareness decreased from 22% in baseline to only 17% in midline.

88

Chapter 7 Comparison of KAP About TB among Target Groups in Baseline and Midline Surveys

TABLE 7.3: Key indicators of knowledge about TB among opinion leaders in the midline KAP survey compared with baseline KAP survey across the 30 districts from 15 states in India Characteristics

Baseline

Midline

N=511

N= 611

N (%)

95% CI

N (%)

95% CI

Spontaneous recall (TB included in the top health priorities of their community)

113 (22)

19-26

191 (31)

28-35

Heard of TB

511 (100)

99-100

575 (94)

92-96

Mode of transmission: through the air when the infected person coughs or sneezes

422 (90)

87-92

456 (75)

71-78

Know that the major symptom of TB is cough of 2 weeks or more

400 (78)

74-82

538 (88)

85-90

Know that sputum smear test is necessary for the diagnosis of TB

407 (80)

76-83

423 (69)

65-73

Consider TB as fully curable disease

468 (92)

89-94

554 (91)

88-93

Heard of DOTS

300 (59)

54-63

351 (58)

54-62

Know that treatment of TB is through allopathic medicines

362 (71)

67-75

526 (86)

83-89


319 (62)

58-67

322 (53)

49-57

Know that the treatment of TB is available at government hospital

462 (90)

88-93

540 (88)

86-91

Have played a role in creating awareness for DOTS

113 (22)

19-26

106 (17)

15-21

Know that DOTS is free of cost

345 (68)

63-71

367 (60)

56-64

NGO/CBO Representatives

The NGO/CBO representatives included individuals who are working with NGOs or in civil society bodies like the self-help groups based at the village or ward level. A total of 51 representatives were interviewed in baseline survey and 93 have been interviewed in midline survey. It is observed that except for a couple key indicators rest all showed a decrease in knowledge about TB from baseline to midline. There was a significant increase in proportion of representatives who knew that treatment of TB is through allopathic medicines (51% in baseline to 85% in midline) (Table 7.4). However, there was an equal decrease in proportions who knew the correct duration of TB treatment as 6-8 months (80% in baseline to 31% in midline). All the other key indicators showed marginal decrease (Table 7.4). The situation suggests that the information regarding TB is being provided in a fragmented approach. Efforts must be made to provide clear, complete and correct knowledge essential for TB control and care in the communities to all key stakeholders who are significantly placed in their communities. It was also observed that the number of agencies involved in TB control decreased from 51% (N=26) in baseline to 31% (N=29) in midline. Interestingly more number of agencies are addressing TB related stigma and resettlement of TB patients in midline survey (23%, 10%) than that observed in baseline (12%, 6%). There is poor awareness among the representatives in midline (14%) regarding RNTCP PPM schemes than among the representatives in baseline (51%). Systematic approach to equip the village or ward level NGO/CBO representatives with knowledge about TB is need of the hour. This approach will in-turn place the representatives in a better place to be involved in TB care and control at community level. Empowering the stakeholders before engaging them in the TB control programmes, will ensure the efforts to be effective and efficient.

89


TABLE 7.4: Key indicators of knowledge about TB among NGO functionaries in the midline KAP survey compared with baseline KAP survey conducted across the 30 districts from 15 states in India Characteristics

Baseline

Midline

N=51

N=93

N (%)

95% CI

N (%)

95% CI

Spontaneous recall (TB included in the top health priorities of their community)

51 (100)

93-100

61 (66)

55-74

Heard of TB

51 (100)

93-100

90 (97)

91-99

Mode of transmission: through the air when the infected person coughs or sneezes

48 (94)

84-98

81 (87)

79-92


47 (92)

81-97

86 (88)

80-93


47 (92)

81-97

78 (84)

75-90

Consider TB as fully curable disease

51 (100)

93-100

87 (94)

87-97

Heard of DOTS

46 (90)

79-96

77 (83)

74-89

Know that treatment of TB is through allopathic medicines

26 (51)

38-64

79 (85)

76-91

Know that the duration of TB treatment is 6-8months

41 (80)

68-89

29 (31)

23-41

Know that the treatment of TB is available at government hospital

50 (98)

90-100

83 (89)

81-94

Have played a role in creating awareness for DOTS

29 (57)

43-69

34 (37)

27-47

Know that DOTS is free of cost

46 (94)

83-98

73 (78)

69-86

NGO working in the area of TB control

26 (51)

38-64

29 (31)

23-41

Spread awareness about TB, prevention & treatment

23 (45)

32-59

26 (28)

20-38

Provide community based care to TB patients

16 (31)

20-45

23 (25)

17-34

Training to TB care health workers & volunteers

6 (12)

6-23

11 (12)

7-20

Help in reducing stigma & discrimination

6 (12)

6-23

21 (23)

15-32

Help resettlement of TB patients

3 (6)

2-16

9 (10)

5-17

10 (20)

11-32

11 (12)

7-20

Spread awareness on DOTS

6 (12)

6-23

8 (9)

4-16

Act as a DOTS provider

2 (4)

1-13

2 (2)

1-8

Aware of RNTCP PPM schemes

26 (51)

38-64

13 (14)

8-22

Involvement in RNTCP schemes

21 (41)

29-55

5 (5)

2-12

Motivating TB patients to get treated under DOTS

90

Comparison of KAP among target groups in Baseline and Midline surveys Comparison of Baseline and Midline findings of TB Knowledge among general population An increase was observed from baseline to midline in proportions of general population who have heard of TB who knew that cough of over 2 weeks is key symptom for TB, who knew that TB is transmitted through air, who had the knowledge that TB can be diagnosed by sputum examination and who knew that the treatment duration for TB is 6-8months. It’s a positive and satisfactory trend observed among general population. 100% 80%

72

84

60%

63

58

62

43

55

50

40%

38

20%

23

0%

Heard of TB

Knowledge that cough of > 2 weeks is key symptom of TB

40

Percentage

Midline

Baseline

88

0

Knowledge that the duration of TB treatment is 6-8 months

Have heard of DOTS

The proportion of respondents with correct knowledge about TB i.e. those heard of TB, know that cough of over 2 weeks is key symptom of TB, know that TB is curable and heard of DOTS increased from 18% in baseline to 32% in midline.

18

Baseline

Knowledge that TB can be diagnosed by sputum examination

Correct Knowledge about TB

32 20

Knowledge that TB is transmitted through air

Midline

Baseline and Midline findings treatment specific indicators among TB patients The indicators regarding treatment have shown a decrease which is a matter of concern. In midline survey, it was observed that though 81% were diagnosed within one month of onset of symptoms, only 47% were initiated treatment within 7 days of diagnosis. This has serious implications in transmission of TB. In baseline survey, 74% were diagnosed within one month and 69% were initiated on treatment within 7 days. This situation needs immediate attention.

100% 80% 60%

Baseline 81

69

76

74

40%

Midline

80

47

58

59

55

53

20% 0%

TB patients diagnosed within 1 month of the onset of symptoms

Proportion of TB patients initiated on treatment within 7 days of diagnosis



Receiving treatment free of cost under DOTS

Knowledge of key facts about TB among opinion leaders More number of opinion leaders were aware that cough of over 2 weeks is key symptom for TB in midline (88%) than in baseline (78%) and know that treatment of TB is through allopathic medicines in midline (86%) than in baseline (71%). However for all the other key indicators like transmission of TB through air, sputum test for TB diagnosis, and duration of TB treatment there was a decrease in proportions. This pattern shows that though there seems an increase in knowledge on some key facts about TB still there is a serious lack on many other key facts. Midline

Baseline

91 92

Consider TB as fully curable disease 69


80 88


78 75

Key mode of transmission i.e. through the air when the infected person coughs/sneezes

90 0

20

40 60 Percentage

100

80

Knowledge on treatment related indicators among opinion leaders Opinion leaders are an important group of people who have influence over their communities and if we are not able to reach them with correct knowledge of TB in a holistic manner, we are failing at an important task of protecting our communities from the effects of lack of knowledge. The RNTCP and the civil society agencies need to focus on this group and involve in them in TB control program actively. As it is observed, the proportion of leaders who played a role in TB awareness decreased from 22% in baseline to only 17% in midline. 90

86

80 Percentage

Midline

Baseline

100

88

71

60

62 53

40

68

59 58

60 22

20

17

0

Know that Know that the Know that the Heard of DOTS treatment duration of TB treatment of TB is through treatment is of TB is available allopathic medicines 6-8 months at government hospital

Know that Have played DOTS is free a role in creating of cost awareness for DOTS

TB control activities performed by NGOs/CBOs representatives Across the indicators for TB control, there is a uniform decline as compared to baseline findings which is a matter of serious concern and seeks serious attention. There is a 20% decrease seen in area of awareness role played by them specific to DOTS, overall awareness activity for TB prevention and treatment (17% decrease). The situation suggests that the information regarding TB is being provided in a fragmented approach. Efforts must be made to provide clear, complete and correct knowledge essential for TB control and care in the communities to all key stakeholders who are significantly placed in their communities. 80 Baseline

Percentage

60

Midline

57

51

45 40

41

37 28

20

31

25

23 12

12

14

12 4

0

2

5

Training to Help in Act as a Aware of Involvement Have played Spread Provide TB care reducing DOTS provider RNTCP PPM in RNTCP a role in awareness community stigma & schemes schemes creating about TB, based care to health awareness prevention & TB patients workers & discrimination for DOTS treatment volunteers

ANNEXURES Annexure 1: L ist of 30 districts selected for the baseline survey Annexure 2: Interviewer Reference Manual

95 96-126

Annexure 3: General Population

127-141

Annexure 4: People Affected with TB

142-160

Annexure 5: Health Service Providers

161-174

Annexure 6: Opinion Leaders

175-185

Annexure 7: NGO/CBO

186-198

Annexure

1

List of 30 districts selected for the baseline survey is as follows: Zone

Principal recipient

State

District

North

The Union

Uttar Pradesh

Agra

Population in Lakhs

North

The Union

Uttar Pradesh

Banda **

18

North

The Union

Uttar Pradesh

Faizabad

20

North

The Union

Uttar Pradesh

Maharajganj**

33

42

North

The Union

Punjab

Hoshiarpur

16

North

The Union

Haryana

Panipat

11

North

The Union

Haryana

Sirsa

13

South

World Vision

Andhra Pradesh

Medak

29

South

The Union

Karnataka

Bijapur

20

South

The Union

Tamil Nadu

Erode

28

South

The Union

Tami Nadu

Vellore

38

South

The Union

Tami Nadu

Nagapattinam

38

South

The Union

Kerala

Thiruvananthapuram

35

South

The Union

Kerala

Kollam

28

East

The Union

Mizoram

Aizwal

4

East

The Union

Bihar

Lakhisarai **

9

East

The Union

Bihar

Nalanda **

27

East

The Union

Bihar

Purnia **

29

East

World vision

Bihar

Saran **

37

East

The Union

West Bengal

Uttar Dinajpur

27

East

World vision

Orissa

Bhubaneshwar Corp

7

East

World vision

Orissa

Koraput

13

West

The Union

Madhya Pradesh

Bhopal

21

West

The Union

Madhya Pradesh

Hoshangabad **

13

West

World vision

Madhya Pradesh

Sehore **

13

West

The Union

Madhya Pradesh

Sagar **

24

West

World vision

Madhya Pradesh

Barwani †

13

West

World vision

Chhattisgarh

Kanker *

8

West

The Union

Maharashtra

Mumbai

133

West

The Union

Rajasthan

Jhunjhunun

22

95

Annexure

2

Interviewer Reference Manual

Tuberculosis (TB) is a major public health problem in India. India accounts for one-fifth of the global TB incident cases. Each year nearly 2 million people in India develop TB, of which around 0.87 million are infectious cases. It is estimated that annually around 330,000 Indians die due to TB. Project Axshya (meaning ‘TB-Free’) adds a new dimension to TB control in India through community ‘ownership’ and civil society-led public health programming. The project is managed by the International The Union Against Tuberculosis and Lung Disease (The Union) through The Union South-East Asia Office (USEA), and implemented by USEA’s nine core sub-recipient partners across India. It is a landmark project funded by The Global Fund to Fight AIDS, Tuberculosis and Malaria (The Global Fund) as part of its larger Round 9 TB grant to India, with The Government of India. As a part of Project Axshya, (Global fund Round 9 India TB project), a baseline, midline and end line TB related knowledge, Attitude and Practices (KAP) surveys are proposed to be conducted to assess the changes in the parameters among various stakeholders during the course of Project period. The baseline survey was a cross sectional study undertaken during the period of January – March, 2011 in a representative sample of 30 districts.

Survey Objective The prime objective of the study is to conduct a midterm survey of Knowledge, Attitude and Practice on Tuberculosis in India and compare with baseline to assess the change. The other specific objectives are given below: l

Information

on TB related knowledge, attitude and practices among general population, newly affected persons, opinion leaders, health services providers and NGO/CBO workers.

l

Attitudes

l

The

l

Individual,

l

Health

l

The

l

Media

l

Determine

l

The

l

The

and experiences of stigma and discrimination related to TB among general public and persons/relations affected by the disease. attitude of the segments towards TB patient with particular reference to gender.

social and environmental barriers including provider and patient delay that contribute to low TB case detection and poor completion of TB treatment. seeking behaviour of women and men, especially the vulnerable groups such as people living in hard to reach areas, backward communities etc., with reference to TB related symptoms. inter-personal relationship between TB health care providers and the persons affected with TB and the role of key community influencers and NGOs in RNTCP. habits/preferences of the beneficiaries, sources of information on TB and exposure to mass media channels. the preferred/trusted communication channels of the beneficiaries for receiving messages related to TB. knowledge, attitude and practice of health care providers on ‘Point of Care tests’.

knowledge, attitude and practice of general public and TB patients towards tobacco use/ control.

96

Annexure 2 Interviewer Reference Manual

The prevalence of TB among the general population who report cough of >2 weeks and screen by routine smear test, to be performed at a designated microscopy centre.

l

Geographic Coverage The survey is a cross-sectional survey of 30 Axshya districts covering from the 15 states of India. The list of states are given below 1

Andhra Pradesh

10

Orissa

2

Bihar

11

Punjab

3

Chhattisgarh

12

Rajasthan

4

Haryana

13

Tamil Nadu

5

Karnataka

14

Uttar Pradesh

15

West Bengal

6

Kerala

7

Madhya Pradesh

8

Maharashtra

9

Mizoram

Questionniares This Midline survey collected information on various indicators that would assist policy makers and programme managers to formulate and implement the goals set for Global Fund Round 9 TB India Project. Specific questionnaires (QRE) were designed for different target groups of: General Population, TB patients, Health Service Providers (HSP), NGO/CBO and Opinion Leaders. These questionnaires were finalised in consultation with both GfK & The Union team members. l

General Population QRE: The information collected some basic demographic details like Age, Sex, marital status, education, source of drinking water, toilet, type of fuel. The other key information included Health seeking behaviour, Knowledge on Tuberculosis, symptoms and treatment, stigma and discrimination associated with it and media habits of respondents are also collected. TB Patients QRE: TB patients QRE was designed to collect information from the people who are diagnosed with TB in the past one year (Both who are undergoing the treatment and those who have completed the treatment) at the time of the survey. The QRE covered the demographic details, health seeking behaviour, TB disease related questions like type of diagnosis, kind of symptoms suffering from, number of health care providers visited for diagnosis, treatment taken etc. The information on Health related awareness, stigma and discrimination faced, tobacco use and media habits were also captured.

l

l

Health Service Provider QRE: The information was collected from the health service providers

who are first point of contact for health care. The main information captured is education details, knowledge on type of TB, symptoms & Treatment. Details with special reference to TB patients like average no. of TB patients, advise on drug, detection of TB patient, medicine etc. l

NGO/CBO:

Non-Governmental organisations and community based organisations’ representatives working in the area is also interviewed using NGO/CBO QRE. Apart from other necessary details on knowledge and awareness on TB, information is also sought on the type of NGO, area of work, whether working in the TB advocacy, awareness etc.

97


Opinion Leaders: The information collected included some basic demographic details like age, sex, marital status, education. The information like Health seeking behaviour, Knowledge on Tuberculosis, symptoms and treatment, stigma and discrimination associated with it and media habit of respondents were also collected.

l

Role of Interviewers The interviewer occupies the central position in this survey because she/he collects information from respondents. Therefore, the success of the survey depends on the quality of each interviewer’s work. In general, the responsibilities of an interviewer include the following: Listing of each household to identify TB patients

l l

To

interview the target respondents and use relevant individual questionnaire

l

To check completed interviews so that all questions were asked and the responses are recorded

clearly l

Returning

to households to interview the respondents who were absent during the initial visit

Role of Supervisor The team supervisor plays a very important role for ensuring the quality and consistency of the data surveyed by you. Following are the responsibilities: l

Make

contact with members of Gram Panchayat (in case of rural settlement) in the beginning which will help in finding the stakeholders

l

Searching

l

Back

l

Observe

l

Address

for different categories of stakeholders

checking some of the interviews to ensure that the interviewee is genuine

some of the interviews to check whether you are conducting the interview in the right manner and also recording the answers correctly any problems faced by you during the survey and preparing your future work assignments

How to conduct an interview

An interview is not a mechanical process and hence it is important for you to make it interesting and pleasant. This art is developed with practice and certain fundamental principles must be followed. Few of the guidelines on how to build rapport with the respondent and how to conduct an interview are briefly described.

Building rapport with the respondent

One of the most important things for an interviewer is to build a very good rapport with the respondent. One needs to have a friendly and cordial behaviour towards the interviewee. Before the start of your work, the team supervisor will be informing the people/stakeholders in the area about yourself.

Make a good impression

Effort should be made to make the interviewer comfortable and at ease. An interview should start with a greeting and a suitable salutation.

98


Stress confidentiality of responses and be positive

If it is observed that the respondent is hesitant to reveal information and is skeptical whether the data will be shared with other people, then it is the responsibility of the interviewer to allay his/her fears. It should be stressed that the information collected will remain confidential and no names will be used for any purpose. The interviewee should also keep a positive and friendly approach and should ask questions accordingly.

Interview the respondent alone

Efforts should be made to conduct the interview of the respondent privately and all the questions should be answered by the interviewee himself/herself. In case the respondent is a TB patients, then extra effort is required to gain privacy. Similarly, if there is more than one eligible person in the household then the interview should be conducted in the absence of the other. In case the respondent is surrounded by lot many people and you are unable to find a secluded/secure place, then you have to use your tact and ingenuity to “get rid” of the people.

Tips for Conducting Interview Be neutral throughout the interview and never suggest answers to the respondent

During the interview, it is very important for you to maintain a neutral stand. You should be careful that the expression on your face and the tone of your voice does not reveal your stance which in a way would affect the answers of the interviewer.

Do not change the wording or sequence of questions

The wording of the questions as well as the sequence is carefully thought and documented beforehand. You are not expected to change the order of the sentences. In case the respondent is having trouble then you can rephrase the questions for his/her better understanding. Provide only the minimum information required to get an appropriate response.

Do not form expectations and do not rush the interview

You should ask the questions slowly and clearly so that the respondent is able to understand the questions properly before answering. Effort must be made to keep the interviewee at ease.

Language of the interview The questionnaires have been translated into all major languages in which interviewing will take place. However it is very important for you to not change/modify the meaning of the questions when you rephrase it or interpret it into another language. Following is the list of all the languages in which the questionnaires are translated. l

Telugu

l

Hindi

l

Kannada

l

Malayalam

l

Marathi

l

Mizo

l

Odiya

l

Tamil

l

Bengali

99


General Population Schedule Questionnaire ID Number: A unique ID will be provided at the time of data entry. State: Following is the list of 17 states with their state codes in which survey will be conducted. State Code

States

State Code

States

01

Andhra Pradesh

02

Bihar

03

Chhattisgarh

04

Haryana

07

Kerala

06

Karnataka

09

Mizoram

08

Maharashtra

11

Odisha

12

Punjab

13

Rajasthan

14

Tamil Nadu

15

Uttar Pradesh

16

West Bengal

17

Madhya Pradesh

District Code: A unique district code is assigned to each district. District Specification: Whether the district is tribal or non tribal. Tehsil/block/city: Name of the tehsil/block/city. Village/ward: A unique village code/ward code is assigned. Type of settlement: Whether the settlement is rural or urban. Distance from the nearest PHC/CHC/DH (kms): Closest government health centre (in kilometers). Name of the respondent: Name of the interviewee. Name of the head of the household: Interviewee’s household head’s name. Serial No. from listing: Number to be written which is assigned in the household listing.

1. Informed Consent The respondent’s consent for participation in the survey must be obtained before you begin the interview. Read the informed consent statement exactly as it is written. This statement explains the purpose of the survey. It assures that respondent participation in this survey is completely voluntary and that he/she can refuse to answer any questions or stop the interview at any point. You will also need to clarify that this information will be kept completely confidential. It will be used for research purpose only. If there is any confusion in the interviewee’s mind then you are expected to make him understand his/her voluntary participation in the language which he/she is familiar with without distorting the meaning.

2. General Information Q.1: Name of the respondent Q.2: Gender: Whether the respondent is male or female.

100


Q.3: Age: Age of the respondent must be asked during the interview and should be observed and recorded. In case of any doubt you should ask the age of the respondent on his/her last birthday. Note that age is one of the most important questions since most of the analysis of the data depends on the respondent’s age. Q.4: Number of family members: The number of people living in the house is to be recorded. Q.5: Marital Status: Marital status of the respondent as on the date of survey to be recorded Item

Description

Married

If the person is married and living together with current spouse.

Code 1

Unmarried

If the person is not married

2

Divorced

If the person is divorced

3

Widowed

If the person was married but his/her spouse is died

4

Separated

If the person was married, but has legally obtained a divorce from

5

his/her spouse

Q.6: Number of children: The number of children of the respondent to be recorded. Q.7: Family type: The family type of the respondent is to be recorded. This has been coded for better understanding. Item

Code

Single

1

Joint

2

Extended

3

3. Health Seeking behaviour Q.8: Healthcare services availed in case of a minor illness: This question asks the respondent what all healthcare facility is used by them in case of minor illnesses. Q.9: Reasons for not going to a Government Health facility: In case the respondent does not avail government health services in question 8 then the reasons of not availing the same is recorded. Q.10: Healthcare services availed in case of a major illness: This question asks the respondent what all healthcare facility is used by them in case of major illnesses. Q.11: Healthcare facilities availed in case any family member develops cough for more than 2 weeks.

101


Q.12: Whether suffering from cough (past 7 days): This question records whether the respondent or any of their family members have been suffering from cough in the past 7 days. In case the response is ‘Yes’, then the duration is also recorded. Q.13: Healthcare services availed: In continuation to question 12 (if the response recorded is ‘Yes’), the respondent is asked whether they or their family members seek any help or visited any health care centre. In case the response is ‘Yes’ then the name of the health care facility is also recorded. Q.14: Health facility availed during the last treatment: This question asks the respondent about the name of the health care provider where he/she visited for his/her last treatment.

4. Knowledge and awareness about Tuberculosis and treatment Q.15 – Q.18: Knowledge of common diseases and awareness of TB: This set of questions asks the respondent to list all the common diseases which he/she is aware of. A brief description of TB by the respondent is also recorded. Q.18 (a) – Q.19: Causes and symptoms of TB: This set of questions asks the respondent about the various causes and symptoms of TB. Q.20: Spread of TB: This question asks the respondent of all possible means which can aid the spread of TB. Q.21Most vulnerable people: The respondent is asked about the people who can easily contract TB. Q.22 – Q.23 & Q.33 – Q.34: General perception about TB: This question deals with the general perception of the respondent. Whether TB is a serious disease or not and can a TB patients be cured or not. Whether the respondent can contract this disease is also asked and in case the response is ‘No’ then what is/are the reason(s) behind. Q.24 – Q.25: Treatment and its duration: This set of questions asks the respondent about the various treatments to cure TB and also the ideal duration of treatment. Q.26 – Q.27: Diagnosis of TB: This set of questions captures the response on the various methods of diagnosis of TB and also the place where it can be diagnosed. Q.28 – Q.29: Place of treatment: This set of questions examines whether the respondent is aware of the places where TB can be treated and also whether regular and complete treatment of TB is important for cure. Q.30 – Q.32: Awareness of DOTS: This set of questions investigates whether the respondent has heard of DOTS and what are the places where DOTS are available. Also it is asked whether they know that DOTS TB treatment is available free of cost.

102


5. Stigma and Discrimination As was defined in “Project Axshya Baseline Knowledge, Attitude and Practices on Tuberculosis in India”, stigma is a process of producing and reproducing inequitable power relations, where negative attitudes towards a group of people, on the basis of particular attributes such as their TB status, HIV status, gender, sexuality or behaviour, are created and sustained to legitimatised dominant groups in society. Similarly discrimination is defined as manifestation of stigma. Discrimination is any form of arbitrary distinction, exclusion or restriction, whether by action or omission, based on a stigmatised attribute. Q.35 – Q.39: Stigma and discrimination: This set of questions collects information on stigma and discrimination mainly on social stigma and gender discrimination. Q.40 – Q.41: Self initiative to control TB: This set of questions records whether the respondent has ever taken any initiatives towards generating awareness about TB & DOTS within the community. Q.42 – Q.45: Frequency and usage of tobacco: This set of questions inquires the respondents of tobacco usage i.e. whether they consume it in the form of cigarette/beedis or chewing. Frequency and the age of starting this practice are also recorded.

6. Media habit and preferences Q.46: Sources of news/information: This question inquires the respondent about all the existing sources of information. Q.47 – Q.48: Radio listening: This set of questions examines the radio listening habits of the respondent. What are the channels heard and how much health related interest is generated. Q.49 – Q.50: TV preference: This set of questions examines the TV preferences of the respondent. What are the channels viewed and how much health related interest is generated. Q.51 – Q.52: Newspaper preference: This question asks about the newspaper reading habit of respondent. If they read newspaper, then its preferred language is also recorded. Q.53 – Q.54: Advertisement/information on TB or DOTS: This set of questions inquires about the advertisement/information and its sources. Q.55 – Q.58: Sources of TB and health related information: This set of questions records the common sources of health related information and information specific to TB.

7. Information sources Q.59 – Q.59 (a): Sources of TB related information: The respondent will be asked on the sources of information for awareness on TB related issues and also on the specific aspects of TB.

103


Q.60 – Q.62: Dissemination of TB related information: The respondent will be inquired about the visit of people to their house/neighbourhood for spreading TB related information in the family/community. In case of ‘Yes’, the person who visited along the information provided by them will also be recorded. Q.63 – Q.64: Sources of TB related information – Preferences: This set of questions will measure the preferences of the respondent in obtaining TB related information.

8. Socio, cultural, economic and demographic characteristics Q.65: Place of Birth: The place of birth of respondents is recorded here Q.66: Mother Tongue: It is an open ended question. The mother tongue of respondent is also recorded Q.67: Religion practiced: Ask the respondents about the religion. Do not try to guess the religion of the woman by either name or by appearance. If the respondent follow Hindu, Muslim, Christian religion. In others case, if respondent follow any other religion like Jainism, Buddhism Q.68: Caste : If the respondent belongs to Schedule caste or scheduled tribe category, OBC or General category, circle the appropriate response. Q.69: Educational level: The term “school” means formal schooling, which includes primary, secondary, and postsecondary schooling and any other intermediate levels of schooling in the formal school system. However, it does include technical or vocational training beyond the primary-school level, such as long-term courses in mechanics or secretarial work or ITI course. Q.70: Occupation: Item

Description

Code

Wage labourer

A manual worker who works for wages in kind or cash in agriculture and non-

1

agriculture activities. Skilled worker

Persons who got certain skills like carpenter, Tailor, shoemaker etc

2

Self employed

Persons who are engaged in their own enterprises or are engaged

3

independently in a profession or trade on own account or with one or a few partners. Service (Govt. &

The regular employees working in others enterprises (Government and

Private)

Private) and getting in return salary or wages on a regular basis

Business

Person who is doing their own business

Agriculture/cultivator A person who is engaged in cultivation of land owned or leased in from

4 5 6

government or from private person(s) or institution for payment in money, kind or share. Cultivation also includes effective supervision or direction in cultivation. Unemployed

Did not work but was seeking and/or available for work

7

House wife

Attending routine domestic chores, etc.

8

Student/

Attending educational institutions/Not able to work due to disability

9

Beggars, Pensioners, Too old to work etc.

10

Handicapped/etc Any other (specify)

104


Q.71: Average household income Q.72: Type of house: Please ask this question from respondent and if interviewer is visiting his/her home then one can also confirm from their observation. See the responses and circle accordingly on Item

Description

Code

Pucca House

Flooring, roof & walls should be cemented/Concrete etc.

1

Semi – Pucca House

Temporary roofs could be with cemented floor & wall or any one of it.

2

Kutcha House

Thatched roofs, mud walls with no floorings.

3

Q.73: Number of rooms in the house: The total number of rooms excluding kitchen is recorded in this question. Q.74: Type of locality: The locality may be village community, town, urban slum, urban township/ society or others. Q.75: Ownership of house Ask whether anyone in your family owns a house – whether it is the house where you are residing or any other house and circle on respective code. Q.76: List of household items: The answers to these questions on ownership of certain items will be used as a rough measure of the Socio economic status of the household. Read out each item and circle the answer given after each item. Do not leave the codes for any item(s) blank. It does not matter who in the household owns the item; only that the item is owned by the household or one of its usual members. Q.77: Main source of drinking water The purpose of this question is to assess the cleanliness of the household’s drinking water by asking about the household’s main source of water. If drinking water is obtained from several sources, probe to determine the source from which the household obtains the majority of its drinking water. If the source varies by season, record the main source used at the time of interview. Item

Description

Code

Private Tap

Pipe connected with in-house plumbing to one or more taps, e.g. in the Kitchen and bathroom. Sometimes called a house connection. In-house pipes connected to a public or private water distribution system. Pipe connected to a tap outside the house in the yard or plot (and the Water is coming from a public or private water distribution system). Sometimes called a yard connection. Private Hand Pump Private hand pump which may be inside the house and may be used to pull the water from ground through hand pump.

105

1

2


Item

Description

Code

Public water point from which community members may collect water (and the water is coming from a public or private water distribution system). A standpipe may also be known as a public fountain or public tap. Public standpipes can have one or more taps and are often made of brickwork, masonry or concrete. Public Hand Pump Public hand pump which will be outside and community members may collect water. People have to pull the water from ground through hand pump. Tube Well A deep hole that has been driven, bored or drilled with the purpose of reaching ground water supplies. Water is delivered from a tubewell or borehole through a pump which may be human, animal, wind, electric, diesel or solar-powered. Supply tanker Water is obtained from a provider who uses a truck to transport water into the community. Typically the provider sells the water to households. River/pond/Steam/ Water located above ground and includes rivers, dam Rain Waterfalls that is collected or harvested from surfaces by roof or ground catchment and stored in a container, tank or cistern, lakes, well, ponds, streams, canals, and irrigation channels

3

Rain water

8

Public Tap

Packaged Water

Water located above ground and includes rivers, dams, lakes, well, ponds, streams, canals, and irrigation channels Bottled water; Water that is bottled and sold to the household in bottles.

4

5

6

7

9

Q.78: Type of toilet system: This question asks the respondent of the type of toilet system he/ she is using. Following the code list: Item

Code

Public

1

Personal

2

Open field/space

3

Shared toilet

4

Others (specify)

99

Q.79: Proper drainage system: Whether there is a proper drainage system in the locality. Q.80: Separate space/room for cooking : If the cooking is done in the house, the respondent is asked whether there is a separate room that is used as a kitchen. This question provides additional information on the hygiene and air quality status of the household Q.81: Type of fuel: This question inquires about the type of fuel used in case of cooking. Following is the code list:

106


Item

Code

Electricity

1

Wood

2

Coal/lignite

3

Kerosene

4

LPG/Natural Gas

5

Charcoal

6

Bio–gas

7

Dung cakes

8


9

Straw/shrubs/grass

10

Other (specify)

99

Q.82 – Q.83: BPL/Aadhaar card: The respondent is asked whether they are in possession of BPL card and/or UID/Aadhaar Card.

107


Opinion Leaders Schedule Questionnaire ID Number: A unique ID will be provided at the time of data entry. State: Following is the list of 17 states with their state codes in which survey will be conducted. State Code

States

State Code

States

01

Andhra Pradesh

02

Bihar

03

Chhattisgarh

04

Haryana

07

Kerala

06

Karnataka

09

Mizoram

08

Maharashtra

11

Odisha

12

Punjab

13

Rajasthan

14

Tamil Nadu

15

Uttar Pradesh

16

West Bengal

17

Madhya Pradesh

District Code: A unique district code was assigned to each district. List of district code is as under: District Specification: Whether the district is tribal or non tribal. Tehsil/block/city: Name of the tehsil/block/city. Village/ward: A unique village code/ward code was assigned. List of village code/ward code is as under: Type of settlement: Whether the settlement is rural or urban. Distance from the nearest PHC/CHC/DH (kms): Closest government health centre (in kilometers). Name of the respondent: Name of the interviewee. Respondent category: The respondent’s category was recorded. Following is the code list for convenience. Item

Code

Village Pradhan

1

Panchayat member

2

Ward member

3

Religious leader

4

ANM

5

AWW

6

Teacher

7

GKS member

8

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1. Informed Consent The respondent’s consent for participation in the survey must be obtained before you begin the interview. Read the informed consent statement exactly as it is written. This statement explains the purpose of the survey. It assures that respondent participation in this survey is completely voluntary and that he/she can refuse to answer any questions or stop the interview at any point. It will also need to clarify that this information will be kept completely confidential. It will be used for research purpose only. If there is any confusion in the interviewee’s mind then you are expected to make him understand his/her voluntary participation in the language which he/she is familiar with without distorting the meaning.

2. General Information Q.1: Name of the respondent Q.2: Gender: Whether the respondent is male or female. Q.3: Age: Age of the respondent must be asked during the interview and should be observed and recorded. In case of any doubt you should ask the age of the respondent on his/her last birthday. Note that age is one of the most important questions since most of the analysis of the data depends on the respondent’s age. Q.4 (a) – Q.4 (b): Address of the respondent and duration of stay: This question asks the respondent their current address and the number of years of his/her stay in the address recorded.

3. Knowledge and awareness about Tuberculosis and treatment Q.5: Common diseases in the community: A list of common diseases prevalent in the community is to be asked from the respondent. The interviewee is to observe and note if TB is mentioned or not. Q.6 – Q.7: In case TB is not mentioned in the above question, the respondent is to be asked whether they are aware of TB. A brief verbatim is also to be recorded and the interviewer needs to skip to the next section i.e. ‘Health seeking behaviour’. Q.8: TB description: In case TB is mentioned as one of the diseases in question number 5, then the respondent is asked to briefly describe the disease. Q.8 (a): Causes of TB: This question examines the respondent’s knowledge on the causes of TB. Following code list records the same. Item

Code

Germs/Microorganism

1

DK/CS

3

Others (specify)

99

Q.9: Symptoms of TB: This question asks the respondent of the various symptoms. Q.10 – Q.12: Knowledge and awareness: This set of questions examines the knowledge and awareness of TB amongst the respondent. Ways of getting infected, vulnerable people and TB being a serious disease in the community is asked here. 109


Q.13 – Q.15: TB treatment and duration: This set of questions inquires about the treatment which can be given to a TB patients. The duration of the treatment is also recorded. Q.16 – Q.18: TB Diagnosis: This set of question investigates the various means of diagnosis as well as the places where one can be diagnosed and be provided medication. Q.19 – Q.25: Awareness about DOTS: This set of questions asks the respondent about their current level of awareness pertaining to DOTS and the places where it is provided.

4. Health seeking behaviour Q.26 – Q.27: Place of treatment – common diseases: This set of questions asks the respondent the place where he/she refers the patients to go for treatment and also the reason(s) if the referred place is not a government health centre. Q.28 – Q.29: Place of treatment – TB: This set of questions inquires the respondent about the place of diagnosis and treatment for TB.

6. Stigma and discrimination Q.30 – Q.34: Stigma and discrimination: This set of questions collects information on stigma and discrimination mainly on social stigma and gender discrimination. Q.35 – Q.36: Self initiative to control TB: This set of questions records whether the respondent has ever taken any initiatives towards generating awareness about TB & DOTS within the community.

7. Media habit and preferences Q.37: Sources of news/information: This question inquires the respondent about all the existing sources of information. Q.38 – Q.39: Radio listening: This set of questions examines the radio listening habits of the respondent. Q.40 – Q.41: TV preference: This set of questions examines the TV preferences of the respondent. Q.42 – Q.43: Newspaper preference: This question asks about the newspaper reading habit of respondent. If they read newspaper, then its preferred language is also recorded. Q.44 – Q.45: Advertisement/information on TB or DOTS: This set of questions inquires about the advertisement/information and its sources.

8. Information sources Q.46 – Q.46 (a): Sources of TB related information: The respondent will be asked on the sources of information for awareness on TB related issues and also on the specific aspects of TB.

110


Q.47 – Q.49: Dissemination of TB related information: The respondent will be inquired about the visit of people to their house/neighbourhood for spreading TB related information in the family/community. In case of ‘Yes’, the person who visited along the information provided by them will also be recorded. Q.50– Q.52: Sources of TB related information – Preferences: This set of questions will measure the preferences of the respondent in obtaining TB related information.

9. General, Socio, cultural and demographic information Q.53: Marital Status: Marital status of the respondent as on the date of survey to be recorded. Item

Description

Code

Married


1

Unmarried


2

Divorced


3

Widowed


4

Separated

If the person was married, but has legally obtained a divorce from his/her spouse

5

Q.54: Number of children: The number of children of the respondent to be recorded. Q.55: Number of family members: The number of people living in the house (including yourself) to be recorded. Q.56: Family type: The family type of the respondent is to be recorded. This has been coded for better understanding. Item

Code

Single

1

Joint

2

Extended

3

Q.57 (a) – Q.57 (b): Place of birth and mother tongue The place of birth of respondents and mother tongue of respondent is recorded in this question. Q.58: Religion practiced Ask the respondents about the religion. Do not try to guess the religion of the woman by either name or by appearance. If the respondent follow Hindu, Muslim, Christian religion. In others case, if respondent follow any other religion like Jainism, Buddhism Q.59: Caste : If the respondent belongs to Schedule caste or scheduled tribe category, OBC or General category, circle the appropriate response.

111


Q.60: Educational level : The term “school” means formal schooling, which includes primary, secondary, and postsecondary schooling and any other intermediate levels of schooling in the formal school system. However, it does include technical or vocational training beyond the primary-school level, such as long-term courses in mechanics or secretarial work or ITI course. Q.61: Occupation: The nature of occupation of a worker or activity status of a non-worker as the case may be is to be recorded here. Item

Code

Village Pradhan

1

Panchayat member

2

Ward member

3

Religious leader

4

ANM

5

AWW

6

Teacher

7

GKS member

8

Any other

99

112


NGO/CBO Schedule 1. Midline knowledge, attitude and practice (KAP) survey on Tuberculosis Questionnaire ID Number: A unique ID will be provided at the time of data entry. State: Following is the list of 17 states with their state codes in which survey will be conducted. State Code

States

State Code

States

01

Andhra Pradesh

02

Bihar

03

Chhattisgarh

04

Haryana

07

Kerala

06

Karnataka

09

Mizoram

08

Maharashtra

11

Odisha

12

Punjab

13

Rajasthan

14

Tamil Nadu

15

Uttar Pradesh

16

West Bengal

17

Madhya Pradesh

District Code: A unique district code was assigned to each district. List of district code is as under: District Specification: Whether the district is tribal or non tribal. Tehsil/block/city: Name of the tehsil/block/city. Village/ward: A unique village code/ward code is assigned. List of village code/ward code is as under: Type of settlement: Whether the settlement is rural or urban. Distance from the nearest PHC/CHC/DH (kms): Closest government health centre (in kilometers). Name of the respondent: Name of the interviewee.

2. Informed Consent The respondent’s consent for participation in the survey must be obtained before you begin the interview. Read the informed consent statement exactly as it is written. This statement explains the purpose of the survey. It assures that respondent participation in this survey is completely voluntary and that he/she can refuse to answer any questions or stop the interview at any point. It will also need to clarify that this information will be kept completely confidential. It will be used for research purpose only. If there is any confusion in the interviewee’s mind then you are expected to make him understand his/her voluntary participation in the language which he/she is familiar with without distorting the meaning.

113


3. General Information Q.1: Name of the respondent Q.2: Gender: Whether the respondent is male or female. Q.3: Age: Age of the respondent must be asked during the interview and should be observed and recorded. In case of any doubt you should ask the age of the respondent on his/her last birthday. Note that age is one of the most important questions since most of the analysis of the data depends on the respondent’s age. Q.4 (a) – Q.4 (b): Address of the respondent and duration of stay: This question asks the respondent their current address and the number of years of his/her stay in the address recorded.

4. Knowledge and awareness about Tuberculosis and treatment Q.5: Common diseases in the community: A list of common diseases prevalent in the community is to be asked from the respondent. The interviewee is to observe and note if TB is mentioned or not. Q.6 – Q.7: In case TB is not mentioned in the above question, the respondent is to be asked whether they are aware of TB. A brief verbatim is also to be recorded and the interviewer needs to skip to the next section i.e. ‘Health seeking behaviour’. Q.8: TB description: In case TB is mentioned as one of the diseases in question number 5, then the respondent is asked to briefly describe the disease. Q.8 (a): Causes of TB: This question examines the respondent’s knowledge on the causes of TB. Following code list records the same. Item

Code

Germs/Microorganism

1

DK/CS

2

Others (specify)

99

Q.9: Symptoms of TB: This question asks the respondent of the various symptoms. Q.10 – Q.12: Knowledge and awareness: This set of questions examines the knowledge and awareness of TB amongst the respondent. Ways of getting infected, vulnerable people and TB being a serious disease in the community is asked here. Q.13 – Q.15: TB treatment and duration: This set of questions inquires about the treatment which can be given to a TB patients. The duration of the treatment is also recorded. Q.16 – Q.18: TB Diagnosis: This set of question investigates the various means of diagnosis as well as the places where one can be diagnosed and be provided medication. Q.19 – Q.24: Awareness about DOTS: This set of questions asks the respondent about their current level of awareness pertaining to DOTS and the places where it is provided.

114


5. Health seeking behaviour Q.25 – Q.26: Place of treatment – common diseases: This set of questions asks the respondent the place where he/she refers the patients to go for treatment and also the reason(s) if the referred place is not a government health centre. Q.27 – Q.28: Place of treatment – TB: This set of questions inquires the respondent about the place of diagnosis and treatment for TB.

6. Stigma and discrimination Q.29 – Q.33: Stigma and discrimination: This set of questions collects information on stigma and discrimination mainly on social stigma and gender discrimination. Q.34 – Q.35: Self initiative to control TB: This set of questions records whether the respondent has ever taken any initiatives towards generating awareness about TB & DOTS within the community.

7. Media habit and preferences Q.36: Sources of information: This question inquires the respondent about all the existing sources of information. Q.37 – Q.38: Radio listening: This set of questions examines the radio listening habits of the respondent. Q.39 – Q.40: TV preference: This set of questions examines the TV preferences of the respondent. Q.41 – Q.42: Newspaper preference: This question asks about the newspaper reading habit of respondent. If they read newspaper, then its preferred language is also recorded. Q.43 – Q.44: Advertisement/information on TB or DOTS: This set of questions inquires about the advertisement/information and its sources.

8. Information sources Q.45 – Q.45 (a): Sources of TB related information: The respondent will be asked on the sources of information for awareness on TB related issues and also on the specific aspects of TB. Q.46 – Q.48: Dissemination of TB related information: The respondent will be inquired about the visit of people to their house/neighbourhood for spreading TB related information in the family/community. In case of ‘Yes’, the person who visited along the information provided by them will also be recorded. Q.49 – Q.51: Sources of TB related information – Preferences: This set of questions will measure the preferences of the respondent in obtaining TB related information.

9. Only for NGO/CBO Q.52: Name of the NGO

115


Q.53: Duration: This question records the respondent’s duration of association with the NGO. Q.54: Issues taken by NGO: This question asks the respondent about the issues tackled by their NGO in recent times. Q.55 – Q.56: TB issues taken by NGO: This set of questions examines whether the respondent’s NGO is involved in TB control and TB related activities. Q.57 – Q.62: Awareness of TB related schemes: Whether the respondent is aware of various TB related schemes will be recorded here. If answer to the previous question is positive, then their NGOs involvement in these schemes will also be recorded. Q.63: Marital Status: Marital status of the respondent as on the date of survey to be recorded. Item

Description

Code

Married


1

Unmarried


2

Divorced


3

Widowed


4

Separated

If the person was married, but has legally obtained a divorce from his/

5

her spouse

Q.64: Number of children: The number of children of the respondent to be recorded. Q.65: Number of family members: The number of people living in the house (including yourself) to be recorded. Q.66: Family type: The family type of the respondent is to be recorded. This has been coded for better understanding. Item

Code

Single

1

Joint

2

Extended

3

Q.67 (a) – Q.67 (b): Place of birth and mother tongue The place of birth of respondents and mother tongue of respondent is recorded in this question. Q.68: Caste: If the respondent belongs to Schedule caste or scheduled tribe category, OBC or General category, circle the appropriate response. Q.69: Religion practiced: Ask the respondents about the religion. Do not try to guess the religion of the woman by either name or by appearance. If the respondent follow Hindu, Muslim, Christian religion. In others case, if respondent follow any other religion like Jainism, Buddhism

116


TB Patients Schedule Questionnaire ID Number: A unique ID will be provided at the time of data entry. State: Following is the list of 17 states with their state codes in which survey will be conducted. State Code

States

State Code

States

01

Andhra Pradesh

02

Bihar

03

Chhattisgarh

04

Haryana

07

Kerala

06

Karnataka

09

Mizoram

08

Maharashtra

11

Odisha

12

Punjab

13

Rajasthan

14

Tamil Nadu

15

Uttar Pradesh

16

West Bengal

17

Madhya Pradesh

District Code: A unique district code was assigned to each district. List of district code is as under: District Specification: Whether the district is tribal or non-tribal. Tehsil/block/city: Name of the tehsil/block/city. Village/ward: A unique village code/ward code is assigned. List of village code/ward code is as under: Type of settlement: Whether the settlement is rural or urban. Distance from the nearest PHC/CHC/DH (kms): Closest government health centre (in kilometers). Name of the respondent: Name of the interviewee. Name of the head of the household: Name of the head of the household

Informed Consent The respondent’s consent for participation in the survey must be obtained before you begin the interview. Read the informed consent statement exactly as it is written. This statement explains the purpose of the survey. It assures that respondent participation in this survey is completely voluntary and that he/she can refuse to answer any questions or stop the interview at any point. It will also need to clarify that this information will be kept completely confidential. It will be used for research purpose only. If there is any confusion in the interviewee’s mind then you are expected to make him understand his/her voluntary participation in the language which he/she is familiar with without distorting the meaning. Q.1 Name of the Respondent: Please ask the name of respondent interviewed for the study. Q.2 Gender: Male or Female.

117


Q.3 Age: This is one of the most important questions in the interview, since almost all analysis of the survey data depends on the respondent’s age. Please ask how old you were in your last birthday. (If the person is aged 18 years or less, then make sure that the consent of the parent or guardian is also taken. Interview parent/guardian if the person is less than 15 years old.) Q.4: Number of family members: The number of people living in the house is to be recorded. Q.5: Marital Status: This question refers to the marital status as on the date of survey Item

Description

Code

Currently Married


1

Unmarried


2

Divorced


3

Widow/Widower

If the person was married but his/her spouse is died.

4

Separated

If the person was married, but has legally obtained a divorce from his/her

5

spouse.

If coded ‘2’ – “unmarried” then skip the next question Q.6: Number of children: The number of children of the respondent to be recorded. Q.7: Family type: The family type of the respondent is to be recorded. This has been coded for better understanding. Item

Code

Single

1

Joint

2

Extended

3

Q.8 Medication for disease other Tuberculosis: Health Seeking Behaviour Q.9: Healthcare services availed in case of a minor illness: This question asks the respondent what all healthcare facility is used by them in case of minor illnesses. Q.10: Reasons for not going to a Government Health facility: In case the respondent does not avail government health services in question 9 then the reasons of not availing the same is recorded. Q.11: Healthcare services availed in case of a major illness: This question asks the respondent what all healthcare facility is used by them in case of major illnesses. Q.12: Healthcare facilities availed in case any family member develops cough for more than 2 weeks.

118


Q.13: Health facility availed during the last treatment: This question asks the respondent about the name of the health care provider where he/she visited for his/her last treatment. It’s an open ended response.

TB Disease related questions Q.14: What is TB? : This questions asks the respondents about their prompt response on TB. It’s an open ended question. Q.15: Cause of TB: The cause of TB is asked from the respondent; whether Germs or microorganism or any other responsible for causing TB. Q.16 & 17: Diagnosis of TB: This question asks the respondents about number of times diagnosed with TB in the past. Q.18: Source of Treatment: The question asks the respondents about the source of treatment after getting diagnosed with TB. Item

Code

Government Hospital

1


2

Both government and private

3

DOTS Centre

4

Clinics run by NGOs

5

Others (Specify)

99

Q.19 intends to find out whether the person who is affected from TB completed a minimum treatment of 6 months of 6 months or not. In case, the respondent had not completed the treatment for 6 month, then next question Q.20 asks about the reason for it. Item

Code

No improvement in health

1

Developed side effects

2

The centre is too far from house

3

Treatment too expensive (in case of private patients)

4

Others (specify)

99

Q.21 – Q.25: Symptoms of Tuberculosis and Treatment Q.21 is about knowing the symptoms of tuberculosis developed in the current episode by tuberculosis affected person and its duration

119


Item

Code

Cough

1

Fever

2

Chest Pain

3

Blood in sputum

4

Weight Loss

5

Don’t know/Can’t Say

6

Others Specify

99

Q.22 asks the respondents about the duration of visit to local service provider after the onset of symptom. This health care provider can be anyone from ASHA to local chemist. This question refers to the current episode of TB. Q.23 intends to know the number of days usually take for diagnosis of Tuberculosis. After how many days of onset of symptom the TB patients come to know that he is suffering from TB. The response is to be recorded in number of days. Q.24 asks the respondents about their visit to number of health care providers before getting diagnosed with TB. The approximate time interval between each visit is to be recorded. Q.25 The purpose of this question is to assess the first point of contact after developing symptoms of tuberculosis. The questions contain multiple responses. Item

Code

Knowledgeable person in community

1

Unqualified Healer in locality (quack)

2

Faith healer

3

Other Family Member

4

Spouse

5

Friends/Relatives/Colleagues/Employer

6

Medicine retail outlet/Chemist

7

Qualified private doctor/clinic

8

Local Health Care Provider

9

Govt. dispensary/health centre

10

Any other (specify)

99

Q.26 a) Place of Diagnosing TB: Q.26 b) Availability of Medical Record: Ask the respondents about the medical records or drugs prescription to substantiate the facts. Record the response accordingly Q.27 Part of Organ Affected: Ask the respondents about the organ affected with tuberculosis if it is lung or any other organ Q.28 a - Q.28 d: Test of Sputum: This set of questions asks the respondents about the test of sputum for confirmation of tuberculosis, place of testing, amount paid for test and medical records available to substantiate the fact. Q.29 a – Q.29 d: X-Ray for TB confirmation: This set of questions asks the respondents about X –ray done by the TB patients for confirmation of tuberculosis, place of doing X –ray, amount paid for X-ray and medical records available to substantiate the fact. 120


Q.30 a – Q.30 d: Blood Testing : This set of questions asks the respondents about blood test done by the TB patients for confirmation of tuberculosis, place of doing blood test, amount paid for blood test and medical records available to substantiate the fact. Q. 31: Time between Diagnosis and Treatment: This question tries to capture the average time required to initiate the TB treatment after getting diagnosed Q.32 – Q.33: Diagnosis and Treatment of TB: This set of question enquires respondents if they have heard of free diagnosis and treatment of tuberculosis. If coded ‘yes’ then place of free diagnosis and treatment available for TB. Q. 34 – Q. 37: Medicine of TB: This set of question asks the respondents about the place of taking TB medicines, still taking TB medicine, if paying for the medicine or not. If the respondent has already completed the course of treatment then ask for the prescription or medical records to substantiate the fact. If TB affected is not taking medicine then reasons for not taking the medicine. Q.38 – Q.46: TB Drug Regularity: This set of question asks the respondents about the regularity of treatment, if respondents missing any doses, if treatment is taken under the supervision and if they are satisfied with the provider. Q. 47 – 50: Time & Cost incurred for TB Treatment These set of questions capture the information on the time and cost incurred for taking treatment of tuberculosis. Cost of treatment per day for travelling as well as on medicines. Q. 51– 53 Government’s Initiative for TB Treatment These questions ask the respondents whether anybody visit their house to check the regularity of medicine. If there is any child less than 6 yrs. If coded ‘Yes’ then ask whether these children receiving any medicine for prevention of TB or not

Stigma and Discrimination Q.57 – Q.70: This set of questions collects information on stigma and discrimination mainly on self-stigma, social stigma and gender discrimination. Q.57 – Q.58: record the information about self –stigma; whether the respondents disclosed their diseases status to family members and record their reaction Q.60 – Q.65: record the information about self –stigma and social stigma; whether the respondents disclosed their diseases status to friends and record their reaction Q. 66 – Q.68: record the information about the community’s perception on the stigma associated with people affected with Tuberculosis Q.69 – Q.70: record the information about the stigma faced by TB patients in the workplace after disclosing the disease status.

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Tobacco Use: Q.71 – Q.73: This question inquires the respondents about their tobacco use, its form and for how long they have been using tobacco and at what age they started using tobacco. Q.74 – Q. 75: These questions capture the type of tobacco used by the TB patient. Q.75 – Q. 80: These questions enquire about the TB patient’s knowledge on association of TB and tobacco. Q.81a – Q.81b: This set of questions enquire patient’s exposure to second hand smoking and its harmful effects on them.

Media habit and preferences Q.82: Sources of news/information: This question inquires the respondent about all the existing sources of information. Q.83 – Q.84: Radio listening: This set of questions examines the radio listening habits of the respondent. What are the channels heard and how much health related interest is generated. Q.85 – Q.86: TV preference: This set of questions examines the TV preferences of the respondent. What are the channels viewed and how much health related interest is generated. Q.87 – Q.88: Newspaper preference: This question asks about the newspaper reading habit of respondent. If they read newspaper, then its preferred language is also recorded. Q.89 – Q.90: Advertisement/information on TB or DOTS: This set of questions inquires about the advertisement/information and its sources. Q.91 – Q.92: Sources TB and health related information: This set of questions records the common sources of health related information and information specific to TB. Q.93 – Q.94: Recall of Message on Tuberculosis: This questions asks the respondents if they can recall any message on TB, If yes, record the message (open ended question) Q. 95 - Q.96: These questions enquire about any advertisement about smoking and its dangers noticed by the TB patients.

Information sources Q.97 – Q.97 (a): Sources of TB related information: The respondent will be asked on the sources of information for awareness on TB related issues and also on the specific aspects of TB. Q.98 – Q.100: Dissemination of TB related information: The respondent will be inquired about the visit of people to their house/neighbourhood for spreading TB related information in the family/community. In case of ‘Yes’, the person who visited along the information provided by them will also be recorded. Q.101 – Q.102: Sources of TB related information – Preferences: This set of questions will measure the preferences of the respondent in obtaining TB related information. 122


Socio, cultural, economic and demographic characteristics Q.103 (a) and 103 (b): Place of Birth: The place of birth of respondents is recorded here

The mother tongue of respondent is also recorded Q.104: Religion practiced: Ask the respondents about the religion. Do not try to guess the religion of the woman by either name or by appearance. If the respondent follow Hindu, Muslim, Christian religion. In others case, if respondent follow any other religion like Jainism, Buddhism Q.105: Caste: If the respondent belongs to Schedule caste or scheduled tribe category, OBC or General category, circle the appropriate response. Q.106: Educational level: The term “school” means formal schooling, which includes primary, secondary, and postsecondary schooling and any other intermediate levels of schooling in the formal school system. However, it does include technical or vocational training beyond the primary-school level, such as long-term courses in mechanics or secretarial work or ITI course. Q.107: Occupation: Item

Description

Code

Wage labourer

A manual worker who works for wages in kind or cash in agriculture and

1

non-agriculture activities. Skilled worker

Persons who got certain skills like carpenter, Tailor, shoemaker etc

2

Self employed

Persons who are engaged in their own enterprises or are engaged

3

independently in a profession or trade on own account or with one or a few partners. Service (Govt. &

The regular employees working in others enterprises (Government and

Private)

Private) and getting in return salary or wages on a regular basis

Business

Person who is doing their own business

Agriculture/cultivator A person who is engaged in cultivation of land owned or leased in from

4 5 6

government or from private person(s) or institution for payment in money, kind or share. Cultivation also includes effective supervision or direction in cultivation. Unemployed

Did not work but was seeking and/or available for work

7

House wife

Attending routine domestic chores, etc.

8

Student/

Attending educational institutions/Not able to work due to disability

9

Beggars, Pensioners, Too old to work etc.

10

Handicapped/etc Any other (specify)

Q.108: Average household income Q.109: Type of house: Please ask this question from respondent and if interviewer is visiting his/her home then one can also confirm from their observation. See the responses and circle accordingly on

123


Item

Description

Code

Pucca House

Flooring, roof & walls should be cemented/Concrete etc.

1

Semi – Pucca

Temporary roofs could be with cemented floor & wall or any one of it.

2

Thatched roofs, mud walls with no floorings.

3

House Kutcha House

Q.110: Number of rooms in the house: The total number of rooms excluding kitchen is recorded in this question. Q.111: Type of locality: The locality may be village community, town, urban slum, urban township/ society or others. Q.112: Ownership of house Ask whether anyone in your family owns a house – whether it is the house where you are residing or any other house and circle on respective code. Q.113: List of household items: The answers to these questions on ownership of certain items will be used as a rough measure of the Socio economic status of the household. Read out each item and circle the answer given after each item. Do not leave the codes for any item(s) blank. It does not matter who in the household owns the item; only that the item is owned by the household or one of its usual members. Q.114: Main source of drinking water The purpose of this question is to assess the cleanliness of the household’s drinking water by asking about the household’s main source of water. If drinking water is obtained from several sources, probe to determine the source from which the household obtains the majority of its drinking water. If the source varies by season, record the main source used at the time of interview. Item

Description

Code

Private Tap

Pipe connected with in-house plumbing to one or more taps, e.g. in the Kitchen and bathroom. Sometimes called a house connection. In-house pipes connected to a public or private water distribution system. Pipe connected to a tap outside the house in the yard or plot (and the Water is coming from a public or private water distribution system). Sometimes called a yard connection.

1

Private Hand Pump

Private hand pump which may be inside the house and may be used to pull the water from ground through hand pump.

2

Public Tap

Public water point from which community members may collect water (and the water is coming from a public or private water distribution system). A standpipe may also be known as a public fountain or public tap. Public standpipes can have one or more taps and are often made of brickwork, masonry or concrete.

3

Public Hand Pump

Public hand pump which will be outside and community members may collect water. People have to pull the water from ground through hand pump.

4

Tube Well

A deep hole that has been driven, bored or drilled with the purpose of reaching ground water supplies. Water is delivered from a tubewell or borehole through a pump which may be human, animal, wind, electric, diesel or solar-powered.

5

124


Item

Description

Code

Supply tanker

Water is obtained from a provider who uses a truck to transport water into the community. Typically the provider sells the water to households.

6

River/p o nd/Steam/ Water located above ground and includes rivers, dam Rain that is collected Waterfalls or harvested from surfaces by roof or ground catchment and stored in a container, tank or cistern, lakes, well, ponds, streams, canals, and irrigation channels

7

Rain water

Water located above ground and includes rivers, dams, lakes, well, ponds, streams, canals, and irrigation channels

8

Packaged Water

Bottled water; Water that is bottled and sold to the household in bottles.

9

Q.115: Type of toilet system: This question asks the respondent of the type of toilet system he/ she is using. Following the code list: Item

Code

Public

1

Personal

2

Open field/space

3

Shared toilet

4

Others (specify)

99

Q.117: Proper drainage system: Whether there is a proper drainage system in the locality. Q.118: Separate space/room for cooking : If the cooking is done in the house, the respondent is asked whether there is a separate room that is used as a kitchen. This question provides additional information on the hygiene and air quality status of the household Q.119: Type of fuel: This question inquires about the type of fuel used in case of cooking. Following is the code list: Item

Code

Electricity

1

Wood

2

Coal/lignite

3

Kerosene

4

LPG/Natural Gas

5

Charcoal

6

Bio–gas

7

Dung cakes

8


9

Straw/shrubs/grass

10

Other (specify)

99

Q.120 – Q.121: BPL/Aadhaar card: The respondent is asked whether they are in possession of BPL card and/or UID/Aadhaar Card.

125


Operational Issues on the Field l

The most common problem faced at the time of fieldwork was in the identification of people affected with TB. Certain factors made people reluctant to reveal their disease status. Due to societal dread, the villagers were not open enough to discuss TB related issues with outsiders. At the time of survey, some of the people affected with TB were either found unavailable as they had gone out for medication or some other work. We found that many people wanted to keep their disease status confidential. Also friends and relatives of the patient did not wish to share this information.

l

The availability of Health Service Providers (mainly doctors) was found to be very less at the PSU level. In most PSUs, the primary health centres were just for the name sake; doctors rarely visited in these centres. Even the other health staff refused to give interviews outright. This has led to increase in the number of interviews in other categories of health service providers. This fact was confirmed from the Respondents belonging to General Population segments where a large number of people said as there is no service available at PHC or sub centre level, to see a qualified doctor they need to go to the district hospital.

l

A

l

There

l

Another

similar situation was encountered in interviewing the NGOs/CBO at PSU level. We did not find many NGOs operating in many villages selected for the study. Thus, we managed to take interviews of some of the self-help groups operating at village level. are certain PSUs where number of households was found to be less than number of households documented in the census sheet. In some of the PSUs, number of households was found more. The major reason for this is the use of Census 2001 data for the purpose of sampling. There is one PSU in District Purnia, Bihar where we found that the entire village was washed off due to floods; only 40 households were left. Some of the PSUs/village had similar names; there are two cases where we found two villages with same name which caused confusion in selecting the right one. This confusion wasted a lot of time in the field. problem was refusal from Panchayat or ward member to conduct survey in their village/ward. In one of the village of Punjab (HOSHIYARPUR DISTRICT), the sarpanch refused to conduct survey in their village. In Maharashtra, one PSU was replaced because it did not exist in Sendhwa block of (BARWANI DISTRICT). The same PSU was replaced with another PSU of Sendhwa block.

Strengths of Field Work l

As

the study deals with the sensitive issue of TB disease in the community, which is still stigmatised, we asked our field teams to seek the support or consent of Panchayat/Ward Member before entering any PSU. This step helped in the building the rapport with the community members. The field teams first focused on the interview of Opinion leaders; then moved on with the listing of Households. This exercise made the data collection process easier in the community.

l

At the time of listing of households, each interviewer was allocated with each Tola of PSU and assigned a unique number. During listing, each interviewer wrote its unique number in the wall of each house listed for the allocated Tola. This modus operandi helped in household identification and prevented the household from duplication.

l

Data

quality was enhanced by checking about 10% of questionnaire in the field by field supervisor. A separate supervisor questionnaire was prepared for all the segments. This supervisor questionnaire was filled after completion of interview by interviewer.

126

ANNEXURE

3 General Population

Midline Knowledge, Attitude and Practice (KAP) Survey on Tuberculosis QUESTIONNAIRE ID NUMBER

________________________

STATE

1. Andhra Pradesh 2. Bihar 3. Chhattisgarh 4. Haryana 5. Karnataka 6. Kerala 7. Maharastra 8. Mizoram 9. Orrisa 10. Punjab 11. Rajasthan 12. Tamil Nadu 13. Uttar Pradesh 14. West Bengal 15. Madhya Pradesh

DISTRICT CODE DISTRICT SPECIFICATION

TRIBAL………………………..1

NON-TRIBAL…………………………2

TEHSIL/BLOCK/CITY VILLAGE/WARD TYPE OF SETTLEMENT

RURAL………………………..1

URBAN……………………………………2

Distance from the nearest PHC/ CHC/DH (kms) Name of Respondent Name of the head of the household Serial No. from Listing

Date of Interview FIELD CONTROL INFORMATION

Starting Time of Interview

AM 1 PM 2

Ending Time of Interview Interview

By

AM 1 PM 2 Code

Sign Spot/back check Yes

1

No

By 2

Scrutiny Yes

1

No

Code

Sign By

2

Code

Sign

If more than one visit made record: * Status of interview First visit

Time:_________

1

2

3

4

Second visit

Time:_________

1

2

3

4

Third visit

Time:_________

1

2

3

4

* Refused...........1 Not available.......2 Partly Completed..3 Completed..........4

127


Good Morning/Evening, My name is _________ I am from a social research organisation GfK Mode. We are conducting a study on behalf of an international Non-Government Organisation called, The International Union Against Tuberculosis and Lung Diseases (The Union). The Union is working with the Government of India, and supporting its Revised National Tuberculosis Control Programme in spreading awareness about tuberculosis in the community. The International Union Against Tuberculosis and Lung Diseases (The Union) an international NGO, is conducting a research study entitled, “Midline Survey on Knowledge, Attitude and Practice (KAP) towards Tuberculosis in 45 districts from 16 states in India.” Through this study we want to get some information on knowledge, attitude & practices regarding Tuberculosis among General Public, so that this information could help design appropriate strategies that will help in TB care and control programmes. All of your responses will be treated as confidential and will be used only for research purposes and also to help policy makers to understand the bottlenecks in functioning, if any, to streamline the functioning You are being invited to take part in this research study. Please ask the researcher any questions that you do not fully understand. It is very important that you are fully satisfied and clearly understand what this research entails and how you could be involved. Your participation is entirely voluntary and you are free to decline to participate. There are no financial incentives given for taking part in this study. If there is anything else that you want to know, if you have any further queries or encounter any problems you can contact Dr. Sarabjit Singh Chadha, Project Director, The Union, New Delhi, contact No : 011-46054400

CONSENT FORM I ……………………………………………, agree to take part in the above mentioned study.

I declare that:

I have read this information and consent form and understand the contents = I have had a chance to ask questions and all my questions have been adequately answered = I understand that taking part in this study is voluntary and I have not been pressurised to take part = I may choose to leave the study at any time and will not be penalised or prejudiced in any way =

Do you have any questions about the survey? (Instruction To Investigator: In Case Of Any Questions Raised By Respondent, Kindly Respond To His/Her Satisfaction) Participant:

Investigator:

Name: - _______________________________

Name: - _________________________

Date: - ________________________________

Date: - __________________________

Signature or thumbprint: - _________________

Signature or thumbprint: - ___________

128

Annexure 3 General Population

General Information Q. No 1

Questions

Response

Skip

What is your Name? ____________________

2 3

Observe and record the interviewee’s sex.

Male

1

Female

2

One

1

Two

2

Three

3

Four

4

More than four

5

Married

1

Unmarried

2

Divorced

3

Widowed

4

Separated

5

One

1

Two

2

Three

3

More than three

4

No children

5

Single

1

Joint

2

Extended

3

How old are you? (Age in completed years)

4

5

6

7

How many people live in your house including yourself?

What is your marital status?

How many children do you have?

What is your family type?

If code 2 Skip to Q. 7

The next few questions are about the HEALTH SEEKING BEHAVIOUR of your family. Please do not get offended by some of the questions. They are just intended to know the access to different types of health facilities Questions 8

When someone falls sick in your family and it is a minor illness, where do they generally go for healthcare? (Please provide them clues and mark the most appropriate answer)

Response

Skip

Government health facility (Including PHC,CHC, district hospital/sub centre/ANM

1

Private Clinic

2

Private Hospital or nursing home

3


4

Homeopathic treatment

5

Traditional healer/Quacks/informal provider

6

Clinic run by NGOs

7

Local chemist or pharmacy

8

ASHA worker in your village

9

Any other (Specify

129

99

If coded 1 then skip to Q. 10


9

If you do not generally go to a Government Health facility? Why not? (please provide clues to the responses and Multiple responses possible)

10

Facility is far from home

1


2

Unfriendly behaviour

3

Long Waiting Hours

4

Lack of Qualified Doctor

5

Lack of Diagnostic facility

6

Private clinics offer better service

7

Inconvenient timings

8

Any Other (Specify)

99

When someone falls sick in your family and it is a major or serious illness that may need hospital admission, where do they generally go for healthcare?

Government health facility (district hospital or community health centre/sub centre/ANM

1

Government medical college

2


3

(Single coding)

Private medical college hospital

4

Corporate, super speciality hospital

5

Private Ayurvedic treatment

6

Private Homeopathic treatment

7

Traditional healer/Quacks

8

Any other (Specify 11

If someone in your family develops cough for more than 2 weeks, where might they generally go for healthcare?

Government health facility (Including PHC,CHC, district hospital)

1

Sub Centre/ANM

2

Private Clinic

3


4

Ayush

5

Dots Centre

6


7

Clinic run by NGOs

8


9

Any other (Specify) 12

13

14

99

99

Have you or your family members been suffering from cough in the past 7 days? If yes, what is the duration?

Yes

1

No

2

If yes, from Q.12, did you or your family member seek any help/visited any health care centre? If yes, where did you go?

Yes

1

No

2

The last time you fell sick and had to seek medical care, where exactly did you go?

Write response verbatim:

If coded 2, skip to Q.14

Duration in days

Record answer

Knowledge and awareness about tuberculosis and treatment 15 16

What are the most common diseases you are aware of? If TB is not mentioned, have you heard of TB? (Please use the alternate terms for TB that is locally used as well)

TB Mentioned

1

TB Not mentioned

2

Yes

1

No

2

DK/CS

3

130

IF coded (1) then skip to Q. 18


17

Record verbatim and skip to Q. 35

If No, in your opinion what could be TB? (Record verbatim)

18

If yes, what is TB? (Record verbatim)

19

Could you mention few symptoms or features of TB? If the person is not able to understand the term ‘symptom’, then give a few examples like pain that occurs when any part of the body is affected (Multiple Response Possible)

A cough of 2 weeks Pain in the chest

2

Coughing up blood

3

Fever

4

Night sweat

5

Weight loss

6

Loss of appetite

7

Don’t know

8

Any other 20

Do you know how a person can get infected with TB? (Please prompt and select the responses, multiple responses possible)

Who do you think are more prone to get TB? (Prompt for multiple Response by asking ‘and’ and record them till the person says no more, multiple responses possible)

22

23

Do you consider TB as a serious disease?

According to you whether TB diseased person can be cured? (Single Response)

24

What is the best treatment for TB? (Single Response)

99

Through handshake with infected person

1

Through the air when the infected person cough or sneeze

2


3

By sharing bed/clothes with infected person

4

By smoking cigarettes/beedis

5

Don’t Know

6

Any Other (Specify) 21

1

99


1

Poor people

2

Malnourished

3

Children

4

Women

5


6


7

HIV +ve

8

Smokers

9

Alcoholic

10

DK/CS

11

Any other

99

Yes

1

No

2

DK/CS

3

Yes, Completely

1

Yes , Partially

2

No

3

DK/CS

4

Herbal Remedies

1

Home Remedies

2

DOTS or TB drugs

3

Other Allopathic medicines

4

Ayurvedic

5

Homeopathy

6

DK/CS

7

Any other (specify) 131

99


25

How long should the treatment be taken to cure TB?

Less than 2 weeks

1

2-4 weeks

2

1-5 months

3

6-8 months

4

More than 8 months (specify)

5

DK/CS

6

How can TB be diagnosed?

Sputum Smear Test

1

(Multiple Response Possible)

X–Ray

2

Mantoux Skin Test

3

Blood test

4

DK/CS

5

(Single Response)

26

27

Are you aware of the place where Tuberculosis can be diagnosed? (Multiple Response Possible)

Any Other (Specify)

99

Government Hospital

1

Private Hospital/Clinic

2

NGO

3

Private lab

4

DK/CS

5

Other 99 28

Are you aware of the place where one can be treated for Tuberculosis? (Multiple Response Possible)

29

Government Hospital

1

CHC/PHCs

2

ANM/ASHA/AWW

3


4

DOTS Provider

5

NGO

6

DK/CS

7

Other

99

In your opinion, is regular and complete treatment for TB important for cure?

Yes

1

No

2

DK/CS

3

30

Have you heard of DOTS?

Yes

1

No

2

31

Are you aware of the place where DOTS is available?

Government Hospital

1

CHC/PHCs

2

ANM/ASHA/AWW

3


4

DOTS Provider/DOTS Centre

5

NGO

6

DK/CS

7

Other

99


32

33

Do you know that under DOTS TB treatment is available free of cost?

Yes

1

No

2

DK/CS

3

Do you think you can get TB?

Yes

1

No

2

DK/CS

3

132

If coded 2, then skip to Q 33

If coded 1, then skip to Q. 35


34

If no, what are the reasons?

I am healthy and strong

1

(Multiple Response)

I do not fall sick easily

2

No one in my family have suffered from TB

3

I have not come in contact with a TB patient

4

I stay away from poor/sick people

5

I do not smoke

6

Others (specify)

99

STIGMA AND DISCRIMINATION The next few questions are related to documenting your opinion on tuberculosis patients Some of the issues are quite sensitive. Please do not get offended by them. Strongly Agree

Somewhat agree

Disagree

A family with TB patient should not be allowed to participate in any social function

1

2

3

B

Married female TB patient should be sent off to her parent’s house

1

2

3

C

Children with TB should not be allowed to go to school

1

2

3

D

Children of parents suffering from TB should not be allowed to go to school

1

2

3

E

TB patient are threat to community

1

2

3

F

TB patients should be left isolated in the community

1

2

3

G

Daily wage Labourer, suffering from TB should not be allowed to work

1

2

3

36

Which of the following you would agree to do?

Yes

No

DK/CS

A

Share a meal with person you know had TB

1

2

3

B

If you suspect one of the female member of your family is suffering from TB, would you take her to hospital

1

2

3

C

Marry your daughter to a boy knowing he had TB

1

2

3

D

Isolate your family member having TB in the house

1

2

3

E


1

2

3

F

Send your daughter in law to parent’s house if she had TB in order to protect other family members from TB

1

2

3

35

Now I will make some statements about People suffering from TB. Please let me know how much you agree to these?

A

133

Can’t Say/Don’t Know

4

4

4 4

4 4 4


37

In your community, how do other people interact/react with a person suffering from TB? (Multiple response possible)

Most people reject him or her

1

Most people are friendly but they generally try to avoid him/her

2

Community (societal) support and help him/her

3

Husbands/in-laws do not accompany female patients to hospital/DOTS centres 4 Female accompany their spouse to hospitals suffering from TB to hospitals/DOTS centre 5 Females suffering from TB face problem in marriage 6

38

39

No change in the reaction

7

Don’t know

8

Do you know anyone in your family/neighbourhood suffering from TB during the last 2 years?

Yes

1

No

2

DK/CS

3

If yes, what advice have you given them?

Go to government hospital

1

Go to private hospital

2

(Multiple Response)

40

41

DOTS Centre

3

None

4

Have you ever taken any initiatives towards generating awareness about TB & DOTS within your community?

Yes

1

No

2

DK/CS

3

If yes, what are they?

Advised people suffering from cough to go and get checked up

1

Participated in TB awareness rallies/Nataks/ Melas etc

2



IF coded 2 & 3 skip to Q. 42

3

Other (specify 42

If coded 2 & 3 skip to Q. 40

99

Do you use tobacco in any form ?

Smoking

1

Chewing

2

Dual

3

None

4

43

If you use, how many times do you use in a day?

Cigarettes/Beedis

44

Since how long have you been using tobacco?

45

At what age did you start using tobacco?

Age in years:...................................

MONTH

134

Chewing

YEAR

If coded 4, skip to Q. 46


Media Habit and Preferences Questions 46

Which source of news/ information you are exposed to? (Multiple Response PossibleProbe)

47

Which channels of Radio do you generally listen to? (Multiple Response Possible)

48

Which programme do you like on Radio? (Multiple Response Possible)

49

Which Television channel do you generally watch? (Multiple Response Possible)

50

Which programmes do you like the most on TV? (Probe for two most liked programmes)

Response Newspaper & Magazine

1

Radio

2

TV

3

Hoardings/posters/leaflets

4

Melas/Nukkad Nataks etc

5

Internet/Web advertising

6

Word of mouth (Interpersonal communication)

7

Mobile phone advertising/SMS

8

Cinema

9

None

10

Any Other

99

Do not listen to Radio

1

Vividh Bharti

2

FM

3

Regional Channel

4

Other (specify)

99

News

1

Drama/Serial

2

Film Songs

3

Folk Songs

4

Health Discussion

5

Discussion on any other issues

6

Advertisement

7

Other (specify)

99

Do not watch TV

1

Other Specify

52

Do you read newspaper? Which language paper generally you read? (Multiple Response Possible)

53

In general, have you ever seen/heard an advertisement/ information on TB or DOTS?

99

News

1

Drama/Serial

2

Entertainment

3

Health Related Programmes

4

Advertisements

5

Folk music

6

Music

7

Films

8

Sports

9

Other (Specify) 51

Skip

If the response is coded as 1 then skip to Q. 51

.99

Yes

1

No

2

English

1

Hindi

2

Any other language

3

Yes

1

No

2

135

If the response is coded 1, then skip to Q. 49




54

If Yes, where did you see/hear such advertisement and/or information on TB/DOTS? (Multiple Response Possible)

55

What are the common sources of getting health-related message? (Multiple Response Possible)

Radio

1

TV

2

Newspaper & Magazines

3

Cinema

4

Hoardings/posters/leaflets/Wall painting

5


6


7

Word of mouth (Interpersonal communication

8

Local Health Service providers

9


10

None

11

TV

1

Radio

2

Cinema

3

Newspaper/Magazines

4

Hoarding/Posters/billboards/Wall writing/Brochure/ other printed material 5

56

From whom did you receive any message on TB? (Multiple Response Possible)

Internet

6


7

Drama/Skits/Street plays

8

Hospital/doctor

9

Friends & Relatives

10

Teachers/peer educator/colleagues

11

Health camp

12

Health workers

13

DOTS providers

14

Local leaders/religious leader

15

Sarpanch/Panchayat Member

16

None of these

17

Other (specify)

99

Friends

1

Family

2

Neighbours

3

Colleague

4

Teachers

5

Newspaper/Magazines/Leaflets

6

Radio

7

TV

8

Wall prints & Bill-boards

57 58

Can you recall any message on TB?

9

Posters/Brochures/Other printed materials

10

Health workers

11

Others (specify)

99

Yes

1

No

2

If yes, the message (Record verbatim)

136


Information Sources 59

What are your sources of information for awareness on Tuberculosis related issues? (Multiple Response Possible)

TV

1

Radio

2

Cinema

3

Newspaper/Magazines

4

Hoarding/Posters/billboards/Wall writing

5


6


7

Hospital/doctor

8

Friends & Relatives

59 a

In general, on what specific aspects of TB was the information provided? (Multiple Response)

9


10

DOTS providers

11

Teachers/peer educator

12

Health camp

13

DOTS Centre

14

Local Dispensary

15

Don’t Know

16

None of these

17

Other (specify)

99

Symptoms of Tuberculosis

1

Prevention from Tuberculosis

2

Cure for Tuberculosis

3

DOTS

4

Place of Treatment

5

Information on prevailing myths about TB patients 6 Others (Specify) 60

61

62

99

Did anyone visit your house/ neighbourhood during last two years to make your family/ community aware and provide information on TB?

Yes

1

No

2

DK/CS

3

If yes, who visited?

Government Doctor

1


Private Doctor

2

AWW

3

ASHA

4

Health worker

5

Worker from an NGO

6

DOTS workers

7

Panchayat/ward member

8

What specific information did they provide? (Multiple Response Possible)

Don’t remember

9

Others (Specify)

99


1


2


3

DOTS

4

Place of Treatment

5

Information on prevailing myths about TB patients 6 Others (Specify)

137

99

If coded 2 & 3 skip to Q. 63


63

Where from would you prefer to get information on TB and related issues? (Multiple Response Possible)

64

Which source of information, do you trust more? (Prompt and record the most appropriate response)

TV

1

Radio

2

Cinema

3

Newspaper/Magazines

4

Hoarding/Posters/billboards/Wall writing

5

Internet/Web Advertising

6


7


8

Hospital/doctor

9

Friends & Relatives

10

Teachers/peer educator

11

Health camp

12


13

DOTS Centre

14

DOTS providers

15

Religious Leader

16

Local Dispensary

17

Don’t Know

18

Other (specify)

99

Popular leaders/Religious leaders

1

Health Staff

2

Print Media

3

Electronic Media

4

Folk Media

5

Friends/Relatives

6

Hoarding/Posters/billboards/Wall Painting

7


8

Local Health workers

9

Inter Personal Communications

10

NGOs

11

None

12

Other (Specify)

99

BEFORE WE END THE INTERVIEW A FEW QUESTIONS ON SOCIO, CULTURE, ECONOMIC & DEMOGRAPHIC CHARACTERISTICS OF YOUR HOUSEHOLD please do not get offended by some of the questions. If you do not wish to answer any question please let the investigator know about it. 65

What is your place of birth?

66

What is your mother tongue?

67

Which religion do you practice?

Buddhism

1

Christianity

2

Hinduism

3

Islam

4

Jainism

5

Sikhism

6

Atheism

7

Others

99

138


68

69

70

What is your caste?

What is the last level of education that you completed?

What is your occupation?

Not willing to share

1

Scheduled caste

2

Scheduled tribe

3

General

4

Other Backward Class

5

Other Caste (Specify)

99

Illiterate

1


2

Less than Primary

3

Primary but less than Secondary

4

Secondary but less than Senior Secondary

5

Senior Secondary but not Graduate

6

Graduation & above

7

Wage labourer

1

Skilled worker

2

Migrant worker

3

Self employed

4

Business

5

Service (Govt. & Private)

6

Agriculture/cultivator

7

Unemployed

8

Housewife

9

Student

10


72

73

What is your average household income per month?

Observe and record :Type of House

How many rooms do you have in your house? (Excluding kitchen)

.99

Less than Rs. 2000

1

Rs. 2001 – Rs. 4000

2

Rs. 4001 – Rs. 8000

3

Rs. 8001 – Rs. 10,000

4

Rs. 10,001 - 25,000

5

Rs. 25,001 – 50,000

6

>50,000

7

DK/CS

8

Pucca house

1

Semi-pucca house

2

Kutcha house

3

One room

1

two room

2

three rooms

3

Others 74

What type of locality do you live in? (Observe and write)

99

Village community

1

Town

2

Urban slum

3

Urban township/society

4

Others 75 76

99

Does your household own this house or any other house?

Yes

1

No

2

Does your household have:

Yes.............1

139

No.............2


A

Electricity

1

2

B

Mattress

1

2

C

Pressure cooker

1

2

D

Chair

1

2

E

A cot or Bed

1

2

F

A table

1

2

G

Electric Fan

1

2

H

Radio Or Transistor

1

2

I

A black & white Television

1

2

J

A colour Television

1

2

K

A sewing Machine

1

2

L

A mobile Telephone

1

2

M

Land line

1

2

N

A computer/laptop

1

2

O

A Refrigerator

1

2

P

A Watch or Clock

1

2

Q

A Bicycle

1

2

R

A Motorcycle or Scooter

1

2

S

An Animal drawn cart

1

2

T

A Car

1

2

U

Water Pump

1

2

V

A Thresher

1

2

W

A Tractor

1

2

77

What is the main source of drinking water for your house?

78

What type of toilet system do you use?

Private Tap

1

Private Hand Pump

2

Public Tap

3

Public Hand Pump

4

Tube well

5

Supply tanker

6

Well/river/pond

7

Rain water

8

Packaged Water

9

Others (Specify

10

Public

1

Personal

2

Open field/space

3

Shared Toilet

4

Others (Specify) 79 80

Is there a proper drainage system in your locality? Is there a separate space/or room for cooking?

.99

Yes

1

No

2

Yes room

1

Yes separate space

2

No separate space

3

140


81

82 83

Type of fuel mostly used for cooking.

Electricity

1

Wood

2

Coal/Lignite

3

Kerosene

4

LPG(Gas)/Natural Gas

5

Charcoal

6

Bio-gas

7

Dung Cakes

8

Agriculture Crop Waste

9

Straw/Shrubs/Grass

10

Others (Specify

99

Does your household have a BPL card?

Yes

1

No

2

Do you have an UID/Aadhaar card?

Yes

1

No

2

THANKS FOR YOUR VALUABLE TIME

141

ANNEXURE

4 People Affected with TB MIDLINE KNOWLEDGE, ATTITUDE AND PRACTICE (KAP) SURVEY ON TUBERCULOSIS

Questionnaire ID Number

________________________

State


District Code District Specification

1. Tribal

2. Non-Tribal

1. Rural

2. Urban

Tehsil/Block/City Village/Ward Type of Settlement Distance from the nearest PHC/CHC/DH (Kms) Name of Respondent Name of the head of the household

DATE OF INTERVIEW STARTING TIME OF INTERVIEW

FIELD CONTROL INFORMATION

AM 1 PM 1

ENDING TIME OF INTERVIEW Interview Yes

1

No

By 2

Spot/back check Yes

1

No Scrutiny

Yes

1

No

Code

Sign By

2

Code

Sign By

2

AM 1 PM 2

Code

Sign

If more than one visit made record: * STATUS OF INTERVIEW First visit

Time:_________

1

2

3

4

Second visit

Time:_________

1

2

3

4

Third visit

Time:_________

1

2

3

4

* Refused.......... 1 Not available...... 2 Partly Completed..3 Completed........ 4

142

Annexure 4 People Affected with TB

Good Morning/Evening, My name is _________. I am from a social research organisation GfK Mode. We are conducting a study on behalf of an international Non-Government Organisation called, The International Union Against Tuberculosis and Lung Diseases (The Union). The Union is working with the Government of India, and supporting its Revised National Tuberculosis Control Programme in spreading awareness about tuberculosis in the community. The International Union Against Tuberculosis and Lung Diseases (The Union) an international NGO, is conducting a research study entitled, “Midline Survey on Knowledge, Attitude and Practice (KAP) towards Tuberculosis in 45 districts from 16 states in India.” Through this study we want to get some information on knowledge, attitude & practices regarding Tuberculosis among People Affected with TB, so that this information could help design appropriate strategies that will help in TB care and control programmes. All of your responses will be treated as confidential and will be used only for research purposes and also to help policy makers to understand the bottlenecks in functioning, if any, to streamline the functioning You are being invited to take part in this research study. Please ask the researcher any questions that you do not fully understand. It is very important that you are fully satisfied and clearly understand what this research entails and how you could be involved. Your participation is entirely voluntary and you are free to decline to participate. There are no financial incentives given for taking part in this study. If there is anything else that you want to know, if you have any further queries or encounter any problems you can contact Dr. Sarabjit Singh Chadha, Project Director, The Union, New Delhi, contact No : 011-46054400

CONSENT FORM I …………………………………..…………., agree to take part in the above mentioned study. I declare that: l I have read this information and consent form and understand the contents l I have had a chance to ask questions and all my questions have been adequately answered l I understand that taking part in this study is voluntary and I have not been pressurised to take part l I may choose to leave the study at any time and will not be penalised or prejudiced in any way Do you have any questions about the survey? (Instruction to Investigator: In case of any questions raised by respondent, kindly respond to his/her satisfaction) Participant:

Investigator:

Name: ____________________________

Name:________________________________

Date: _____________________________

Date:_________________________________

Signature or thumbprint: _______________

Signature or thumbprint: _________________

143


GENERAL INFORMATION Q. No.

Questions

Response

Skip

1

What is your Name?

____________________

2


Male ............................................... 1 Female ............................................ 2

3


4

How many people live in your house?

One................................................. 1 Two ................................................ 2 Three .............................................. 3 Four ................................................ 4 More than four ................................... 5

5

What is your current marital status?

Married............................................. 1 Unmarried ........................................ 2 Divorced .......................................... 3 Widowed .......................................... 4 Separated ......................................... 5

6


One ................................................ 1 Two ................................................ 2 Three .............................................. 3 More than three ................................. 4 No children ....................................... 5

7


Single .............................................. 1 Joint ............................................... 2 Extended .......................................... 3

8

Are you taking medicines for any other conditions other than tuberculosis? (Do not prompt HIV/AIDS)

HIV/AIDS .......................................... 1 Diabetes ........................................... 2 None ............................................... 3 Any other ........................................ 99

If the person is aged 18 years or less, then make sure that the consent of the parent or guardian is also taken. Interview parent/guardian if the person is less than 15 years old.

144

If coded 2, Skip to Q. 7


The next few questions are about the HEALTH SEEKING BEHAVIOUR of your family. Please do not get offended by some of the questions. They are just intended to know the access to different types of health facilities Q. No

Questions

Response

Skip

9

When someone falls sick in your family and it is a minor illness (e.g. cough, fever, diarrhea), where do they generally go for healthcare?

Government health facility (Including corporation hospital, PHC,CHC, district hospital/sub centre/ANM).. 1 Private Clinic.............................................. 2 Private Hospital or nursing home....................... 3 Ayurvedic or Siddha treatment......................... 4 Homeopathic treatment................................. 5 RMP..........................................................6 Traditional healer/Quacks/ informal provider/”Bengali doctor”........................................ 7 Clinic run by NGOs........................................ 8 Local chemist or pharmacy............................. 9 ASHA worker in your village............................10 Any other (Specify)......................................99

If coded (1) skip to 11

10

If you do not generally go to a Government Health facility? Why not?

Facility is far from home................................ 1 Unavailability of doctors................................. 2 Unfriendly behaviour of govt. staff.................... 3 Long Waiting Hours....................................... 4 Lack of Qualified Doctor................................. 5 Lack of Diagnostic facility............................... 6 Private clinics offer better service..................... 7 Inconvenient timings..................................... 8 Drugs are not available....................................9 Any Other (Specify)......................................99

11

When someone falls sick in your family and it is a major or serious illness that may need hospital admission, where do they generally go for healthcare?

Government health facility (corporation hospital, district hospital or community health centre/Sub centre/ANM).............................................. 1 Government medical college........................... 2 Private Hospital or nursing home....................... 3 Private medical college hospital....................... 4 Corporate, super speciality hospital.................... 5 Private Ayurvedic treatment............................ 6 Private Homeopathic treatment........................ 7 Traditional healer/Quacks............................... 8 Any other (Specify)......................................99

12

If someone in your family develops cough for more than 2 weeks, where might they generally go for healthcare?

Government health facility (Including corporation clinic, PHC,CHC, district hospital).................... 1 Sub Centre/ANM.......................................... 2 Private Clinic.............................................. 3 Private Hospital or nursing home...................... 4 Ayush....................................................... 5 Dots Centre ............................................... 6 RMP..........................................................7 Traditional healer/Quacks/ informal provide/”Bengali doctor”.........................................8 Clinic run by NGOs........................................9 Local chemist or pharmacy.............................10 ASHA worker in your village............................11 Any other (Specify)......................................99

13

The last time you fell sick (with any disease) and had to seek medical care, where exactly did you go?

Write response verbatim:

145


TB DISEASE RELATED QUESTIONS FOR TB PATIENTS Q. No

Questions

Response

Skip

14

Do you know what TB is?

Yes.......................................................... 1 No .......................................................... 2 If yes, .....................................................

15

Can you tell us what causes TB ?

Germs/Microorganisms.................................. 1 DK/CS...................................................... 3 Others (Specify).........................................99

16

Was this the first time you were diagnosed with TB?

Yes.......................................................... 1 No........................................................... 2

17

If no, then how many times in the past were you diagnosed with TB?

Once........................................................ 1 Twice....................................................... 2 Three times or more..................................... 3

18

Where did you take the treatment previously?

Government Hospital.................................... 1 Private hospital/clinic................................... 2 Both government and private.......................... 3 DOTS Centre.............................................. 4 Clinics run by NGOs...................................... 5 Others (Specify)..........................................99

19

Did you complete a minimum of 6 months of treatment each time?

Yes.......................................................... 1 No........................................................... 2

20

If no for the above question, could you tell the reasons for not completing the treatment?

No improvement in health............................. 1 Developed side effects.................................. 2 The centre is too far from house..................... 3 Treatment too expensive (in case of private patients).................................................. 4 Others (specify)..........................................99

21

What symptoms did you have for the current episode?

Cough (If mention, then for what duration _____ Days/weeks).............................................. 1 Fever (If mention then for what duration _____ Days weeks).............................................. 2 Chest pain (If mention then for what duration _____ Days/weeks).............................................. 3 Blood in sputum (If mention then for what duration _____Days/weeks)...................................... 4 Weight loss (If mention then for what duration _____ Days/weeks).............................................. 5 CS/DK...................................................... 6 Others(specify)...........................................99

22

How long after the onset of these symptoms did you visit a health care provider (anybody, including local drug store or ASHA worker or informal provider)? [this question refers to the current episode of TB]

Less than a week......................................... 1 1 week..................................................... 2 2 weeks.................................................... 3 3 weeks.................................................... 4 4 weeks.................................................... 5 4-6 weeks.................................................. 6 6-8 weeks.................................................. 7 8-12 weeks................................................ 8 >12 weeks................................................. 9 Not Visited................................................10 Do-not know..............................................11 Others (Specify).........................................99

146

If the response code is 1 then skip to Q. 21.

If yes come to Q 21


Q. No

Questions

23

After how many days of the onset of symptoms did you come to know that you are/ were suffering from TB? [this question refers to the current episode of TB]

24

How many health care providers (any provider, including local drug shops and informal providers) did you visit before you were diagnosed with TB? What was the approximate time interval between each visit? Please name the type of provider in the order you visited them and time since you first developed TB symptoms (for current episode):

Response

Skip

______ Days

________ number of providers seen before diagnosis Time since onset of symptoms (in days)

Order of healthcare provider seen

Type of provider (enter code number from list below)

Did this person diagnose TB? (Y/N)

First Second Third Fourth Fifth Sixth Seventh (stop with the provider who diagnosed TB) Codes for type of provider: Government health facility (e.g. corporation clinic, PHC, CHC, district hospital)........................... 1 Sub Centre/ANM......................................... 2 Private Clinic............................................. 3 Private Hospital or nursing home..................... 4 Ayush practitioner....................................... 5 Dots Centre .............................................. 6 RMP..........................................................7 Traditional healer/Quacks/informal provide/ ”Bengali doctor” .........................................8 Clinic run by NGOs........................................9 Local chemist or pharmacy.............................10 ASHA worker in your village............................11 Any other (Specify) .....................................99

25

After getting these symptoms, whom all did you consult before seeking medical care? (multiple answers possible)

Knowledgeable person in community.................. 1 Unqualified Healer in locality (quack) ................ 2 Faith healer................................................ 3 Other Family Member.................................... 4 Spouse...................................................... 5 Friends/Relatives/Colleagues/Employer............. 6 Medicine retail outlet/Chemist......................... 7 Qualified private doctor/clinic......................... 8 Local Health Care Provider.............................. 9 Govt. dispensary/health centre........................10 Any other (specify).......................................99

147


Q. No

Questions

Response

26a

Where were you diagnosed to be having tuberculosis? Or who made a diagnosis that you are suffering from TB?

At Government Hospital/Dispensary (Including PHC, CHC......................................................... 1 Government health worker.............................. 2 TB hospital/TB diagnostic Centre/DOTS centre/ Designated Microscopic Centre......................... 3 Government Medical college............................ 4 Private Clinic/Private Hospital/Private Doctor...... 5 Ayurvedic Doctor/Homeopathic doctor................ 6 Traditional healer/RMP/Bengali doctor................ 7 Clinics/hospitals run by NGOs.......................... 8 Any other Specify.........................................99

(Please cross check with the prescriptions or medical records if they are available)

Skip

26b

Are any medical records or drug prescriptions or TB drugs available to substantiate whatever the person tells?

Yes........................................................... 1 No........................................................... 2

27

What organ of your body was said to be affected by TB?

Lungs........................................................ 1 Any other (Specify) .....................................99

28 a.

Was your sputum tested by anyone before you were told that you had TB?

Yes........................................................... 1 No........................................................... 2

28.b

If yes, where was the sputum testing done? (record verbatim)

________________________________

28.c

How much did you pay for the sputum test? (record verbatim)

Rs. ______________________________

28 d

Are any medical records (Q.28b) or receipts (Q.28c) available to substantiate whatever the person tells?

Medical Records.......................................... 1 Receipts.................................................... 2 None.........................................................3

29a

Was a chest x-ray taken before you were told that you had TB?

Yes........................................................... 1 No........................................................... 2

29b

If yes, where was the x-ray taken? (record verbatim)

________________________________

29c

How much did you pay for x-ray? (record verbatim)

Rs. ______________________________

29d

Are any medical records (prescription/X-ray/X-ray report etc) or receipts available to substantiate whatever the person tells?

Medical records/X-ray/X-ray report................... 1 Receipts.................................................... 2 None.........................................................3

30a

Was your blood tested by anyone before you were told that you had TB?

Yes........................................................... 1 No........................................................... 2 If yes, was the blood test for TB antibodies using ELISA or rapid test (e.g. IgG/IgM serological test)? Yes........................................................... 1 No........................................................... 2

30b

If yes, where was the blood testing done? (record verbatim)

148

If No, then move to question no. 29

If No, then move to question no. 30


Q. No

Questions

Response

Skip

30c.

How much did you pay for the blood test? (record verbatim)

Rs ___________ (approximately)…………….

30d

Are any medical records available to substantiate whatever the person tells?

Yes........................................................... 1 No........................................................... 2

31

After you were told that you had TB, how many days later did you begin TB treatment?

______ days

32

Have you heard of free diagnosis and treatment for tuberculosis?

Yes........................................................... 1 No........................................................... 2

33

If yes, then from where is it available? (Multiple Coding)

Government health facility............................. 1 Private health facility.................................... 2 Non-Governmental health facility...................... 3 Do not know............................................... 4 Not applicable............................................ 5 Others .....................................................99

34

From where are/were you taking medicines? (Single Coding)

From the Government health centres, free of cost under DOTS................................................ 1 From the Government health centres, with payment for medicines.............................................. 2 From non-government health centres, free of cost.... 3 From the non government health centres, with payment for medicines.................................. 4 DOTS Provider/Worker.................................. 5 ANM......................................................... 6 ASHA........................................................ 7 Do-not know............................................... 8 Informal providers/RMP/Bengali doctor...............9 I buy my medicines by myself..........................10 Medicine not started yet................................11

35a

Are you still taking TB medicines?

Yes........................................................... 1 No........................................................... 2 Treatment completed.................................... 3

35b

If yes, are you paying for your TB medicines?

Yes........................................................... 1 No........................................................... 2 Do-not know............................................... 3

35c.

If you have already completed TB treatment, did you pay for your TB medicines (at any time during treatment)?

Yes........................................................... 1 No........................................................... 2 Do-not know............................................... 3

35d

Are any medical records (Prescription or drugs) available to substantiate that this person took (or is taking) TB treatment?

Yes........................................................... 1 No........................................................... 2

36

If no in Q.35a, then why are you not taking medicines?

On the advice of the treating medical practitioner/ Completely Cured........................................ 1 Stopped by myself........................................ 2 Medicine is expensive and I stopped taking it....... 3 Side effect................................................. 4 Medicine not available Medicine .......................5 Not yet started ........................................... 6 Other.......................................................99

149

If No, then skip to Q.34

If No, then go to Q.36. If coded 3 the go to Q.35 c


Q. No

Questions

Response

Skip

37

How many months of treatment did you take or how many months have you taken the treatment so far.?

38

Are you taking/Did you take the medicines regularly without missing any doses?

Yes........................................................... 1 No........................................................... 2

39

How long have you been advised to take medicines? Or how long were you advised to take the medications?

Less than 2 weeks........................................ 1 2-4 weeks.................................................. 2 1-3 months................................................. 3 4-5 months................................................. 4 6-8 Months................................................. 5 More than 8 months-Specify.............................6 Do-not know............................................... 7 Not applicable............................................ 8

40

Instruction : This question is applicable to TB patients currently on Treatment If coded 1 in 35 a Are you taking the medicines regularly without missing any doses in the last 2 weeks?

Yes........................................................... 1 No........................................................... 2 Not applicable 3

41

Did you know that missing your medicines could increase the severity of the disease/treatment failure?

Yes........................................................... 1 No........................................................... 2

42

How do you rate the regularity of your drug intake?

Completely regular ......................................1 Somewhat irregular.......................................2 Very irregular.............................................. 3 Not yet started............................................ 4

43

Why was there any break or irregularity in treatment?

Could not go for medicines............................. 1 Interrupted due to side effects........................ 2 Could not afford to buy medicines anymore......... 3 Discontinued as symptoms disappeared.............. 4 Forget/non seriousness.................................. 5 DOTS Provider was not available....................... 6 Any other (specify........................................99

44a

Are you taking/did you take the medicines on your own or under supervision

Under supervision........................................ 1 Independently............................................. 2

44b

Who is supervising/providing the medicines for you?

ANM from nearest sub-centre........................... 1 Anganwadi Worker........................................ 2 ASHA worker.............................................. 3 NGO volunteer in the community..................... 4 Directly from the health facility....................... 5 Community volunteer.................................... 6 Sarpanch/Panchayat Member.......................... 7 Neighbour/relatives/friends............................ 8 DOTS Provider............................................. 9 Not applicable............................................10 Any other (specify.......................................99

45

Were you given a choice to select your provider?

Yes........................................................... 1 No........................................................... 2 Not applicable............................................ 3

Days

150

Months

If taken medicines in the past, skip to Q.41

If coded 1 then go to Q.44 if 4 coded go to Q no. 45

If the response is coded 2 then go to 49.


Q. No

Questions

Response

Skip

46

Are you satisfied with your provider?

Yes........................................................ 1 No......................................................... 2 Can not say 3

47

How much time does it take to reach your provider and how much does it cost?

Minutes_______________________ Rs. ………………………………………………….

48

Is timing/availability of the health service provider convenient to you?

Yes........................................................ 1 No......................................................... 2

49

Are you paying for your medicines/did you pay for your medicines?

Yes........................................................ 1 No......................................................... 2 Do-not know............................................. 3

50

How much does/did it cost per day?

________ (in Rupees)

51

Does/did anybody visit your house and check whether you are taking medicines regularly as prescribed or not?

Yes........................................................ 1 No......................................................... 2

52

Are there any children aged less than 6 years old in the house?

Yes........................................................ 1 No......................................................... 2

53

If yes, are/did they receiving/receive any medicines for the prevention of disease?

Yes........................................................ 1 No......................................................... 2 Not applicable (TB patient).......................... 3

If the response is coded 2, then skip the next question and go to 51

If coded 2 go to Q 54

The next few questions relate to identification of the sources of HEALTH INFORMATION for your family 54

For any health related information, who does your family contact?

If coded 10 Local Health care provider(ANM/RMP/ASHA /AWW).................................................. 1 then go to Neighbour/Friend/relative............................. Q 57 2 Doctor (Allopathic) .................................... 3 Community leader...................................... 4 Religious leader.......................................... 5 NGO Workers............................................ 6 Pharmacist............................................... 7 AYUSH Doctors........................................... 8 DOTS provider .......................................... 9 None.....................................................10 Other specify............................................99

55

Name of the person who the family contacts for any health related information

1. Name: _______________________ 2. Designation: ________________ 3. Relationship to the person: _________

56

Name of the person who the family contacts for any health/medical care

1. Name: _______________________ 2. Designation: __________________ 3. Address: ________________________

151


The next few questions are related to understanding other people’s reaction/response to your disease. They could be a little sensitive. Please do not feel bad. 57

Have you informed about your disease status to your household family members?

Yes........................................................ 1 No........................................................ 2 Do-not want to answer this question............... 3 Not applicable (in case of a child) .................. 4

58

If Yes then how do you rate their reaction?

Supportive............................................... 1 Not supportive.......................................... 2 Do not want to answer................................ 3

59

If No, why did you not inform them?

Fear....................................................... 1 Discrimination.......................................... 2 Others (specify) .......................................99

60

Have you informed your disease status to any of your friends?

Yes........................................................ 1 No........................................................ 2 Do-not want to answer this question’.............. 3

61

If yes, did you experience any discriminatory difference in their interaction with you after they knew that you have TB?


62

If yes, then did you experience that your friends don’t want to have a meal with you?


63

If yes, then did your friends refuse to enter into your house because of your disease status?


64

If Yes, Did people refuse to shake hands with you?


65

(Ask this question only if the person is married, if the person is un-married then skip this question and go to question 66) If married, did you see any discriminatory change in the relationship with your partner?


66

In your community, do you think that if a boy is known to have suffered from TB, will he get married?


67

In your community, do you think that if a girl is known to have suffered from TB, will she get married?

Yes........................................................ 1 No........................................................ 2 Do-not know............................................. 3

68

In your community, who do you think suffer more (socially) when they are affected by TB? Males or females

Males..................................................... 1 Females ................................................. 2 Both are equally affected............................ 3 Do-not know............................................. 4 No one suffers ......................................... 5

152

If no then go to question No. 59. If 3 or 4 then go to No. 60

If coded 2 & 3 go to question number 65.


69

(Ask this question only if the person is employed) Have you disclosed your disease status at the place of your employment?

Yes........................................................ 1 No........................................................ 2 Do-not want to answer................................ 3 Not applicable.......................................... 4

70

Did you have to change your employment because of your disease status?

Yes........................................................ 1 No........................................................ 2 Do-not want to answer................................ 3 Not applicable.......................................... 4

The next few questions relate to TOBACCO USE (instruction ;_if respondent age is below 12 years go to Q 81A) 71

Do you currently use tobacco?

Yes No If yes, Smoke Smokeless Both

1 2

1 2 3 4

1 2 3

72

If Yes, for how long have you been using tobacco now?

< 1 year 1-3 year 4-10 years 10 years

73

At what age did you start using tobacco?

Age in years:

74

What type of tobacco do you smoke? (Multiple Coding)

Cigarette 1 Beedi 2 Hookah 3 Others (specify) ---------------------------------------99

75

What type of smokeless tobacco do you use?

Chewing 1 Sniffing 2 Others (specify)----------------------------------------99

76

Do you know the association (or link) between smoking and TB?

Yes No

1 2

77

Do you know smoking increases the risk of developing TB disease?

Yes No

1 2

78

Are you aware that smoking damages the defence mechanism of lungs and make you more prone to infections and TB disease?

Yes No

1 2

79

Are you aware of the consequences if you continue to smoke during treatment of TB or after the completion of your treatment?

Yes No

1 2

80

During your visit to a doctor/ health care provider, were you advised to quit smoking/ using tobacco?

Yes No

1 2

81a

Are you exposed to secondhand smoke (passive smoke) at your home?

Yes No

1 2

81b

If yes, do you know its harmful effects on you as a TB patient?

Yes No

1 2

153

If No, then skip all questions in this section and go to question 82


The next few questions relate to MEDIA HABIT & PREFERENCES Q. No

Questions

Response

Skip

82

Which source of information you are exposed to? (Multiple Response Possible-Probe)

Newspaper & Magazines 1 Radio 2 TV 3 Hoardings/posters/leaflets 4 Melas/Nukkad Nataks etc 5 Internet/Web advertising 6 Word of mouth (Interpersonal communication 7 Mobile phone advertising/SMS 8 Cinema 9 None----------------------------------------------------10 Any Other----------------------------------------------99

83a

Do you listen to radio?

Yes No

83b.

If Yes, Which channel of Radio do you generally listen to? (Multiple Response Possible)

Vividh Bharti 1 FM (specify) 2 Regional Channel 3 Community Radio 4 Other (specify)----------------------------------------99

84

Which programme do you like most on Radio? (Multiple Response Possible)

News 1 Drama/Serial 2 Film Songs 3 Folk Songs 4 Health related Discussion 5 Other (specify)----------------------------------------99

85a

Do you watch television

Yes No

85b


Do not watch TV 1 Other (specify)----------------------------------------99

86


News 1 Drama/Serial 2 Entertainment 3 Health Related Programmes 4 Advertisements 5 Folk music 6 Music 7 Films 8 Sports 9 Other (Specify)----------------------------------------99

1 2

1 2

154

If the person does not listen the radio, please skip the next question and go to question no. 85

If the person does not watch television, then please go to question no 87


Q. No

Questions

Response

Skip

87

Do you read newspaper?

Yes No

1 2

88

Which language paper generally you read?

English Hindi Any other Local language

1 2 3

89

Have you ever seen an advertisement/information on Tuberculosis or DOTS?

Yes No

1 2

90

If Yes, Where did you see/ hear such advertisement or/ and information on TB/DOTS? (Multiple Response Possible)

Newspaper & Magazines 1 Radio 2 TV 3 Hoardings/posters/leaflets 4 Melas/Nukkad Nataks etc 5 Any Other (specify)-----------------------------------99

91

What is your most common source of getting healthrelated message? (Multiple Response Possible)

TV 1 Radio 2 Cinema 3 Newspaper/Magazines 4 Hoarding/Posters/billboards/Wall writing/ Brochure/other printed material 5 Internet 6 Public service announcements 7 Drama/Skits/Street plays 8 Hospital/doctor 9 Friends & Relatives-----------------------------------10 Teachers/peer educator/colleagues-------------11 Health camp-------------------------------------------12 Health workers----------------------------------------13 DOTS providers----------------------------------------14 Local leaders/religious leader---------------------15 Sarpanch/Panchayat Member----------------------16 None of these ----------------------------------------17 Other (specify) ---------------------------------------99

92

From whom did you receive any message on TB? (Multiple Response Possible)

Friends 1 Family 2 Neighbours 3 Colleague 4 Teachers 5 Newspaper/Magazines/Leaflets 6 Radio 7 TV 8 Wall prints & Bill-boards 9 Posters/Brochures/Other printed materials------10 Health workers----------------------------------------11 Others (specify) --------------------------------------99

155

If coded 2 skip to Q.89

If coded 2, then skip to Q.91


Q. No

Questions

Response

Skip

93

Can you recall any message on TB?

Yes No

94

If yes, then specify the message?

95

In the last 30 days, have you noticed information about the dangers of smoking cigarettes or that encourages quitting in newspapers or in magazines?

Yes No Not applicable

1 2 3

96

In the last 30 days, have you noticed information about the dangers of smoking cigarettes or that encourages quitting on televisions?

Yes No Not applicable

1 2 3

1 2

(Record verbatim)

INFORMATION SOURCES 97


TV Radio Cinema Newspaper/Magazines Hoarding/Posters/billboards/Wall writing Public service announcements Drama/Skits/Street plays Hospital/doctor Friends & Relatives Health & related workers DOTS providers Teachers/peer educator Health camp DOTS Centre Local Dispensary Don’t Know None of these Other (specify)

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 99

97a

In general, on what specific aspects of TB was the information provided?

Symptoms of Tuberculosis Prevention from Tuberculosis Cure for Tuberculosis DOTS Place of Treatment Information on prevailing myths about TB patients Others (Specify)

1 2 3 4 5

Yes No DK/CS

1 2 3

98

Did anyone visit your house/ neighbourhood during last two years to make your family/ community aware and provide information on TB?

156

6 99 If coded 2 & 3 skip to 101


99

If yes, who visited? (Multiple Response Possible)

Government Doctor 1 Private Doctor 2 AWW 3 ASHA 4 Health worker 5 Worker from an NGO 6 DOTS workers 7 Panchayat/ward member 8 Don’t remember 9 Others--------------------------------------------------99

100

What specific information did they provide? (Multiple answers)

Symptoms of Tuberculosis 1 Prevention from Tuberculosis 2 Cure for Tuberculosis 3 DOTS 4 Place of Treatment 5 Information on prevailing myths about TB patients 6 Others--------------------------------------------------99

101


TV 1 Radio 2 Cinema 3 Newspaper/Magazines 4 Hoarding/Posters/billboards/Wall writing 5 Internet/Web Advertising 6 Public service announcements 7 Drama/Skits/Street plays 8 Hospital/doctor 9 Friends & Relatives-----------------------------------10 Teachers/peer educator-----------------------------11 Health camp-------------------------------------------12 Health & related workers----------------------------13 DOTS Centre-------------------------------------------14 DOTS providers----------------------------------------15 Religious Leader---------------------------------------16 Local Dispensary---------------------------------------17 Don’t Know --------------------------------------------18 Other (specify)-----------------------------------------99

102

Which source of information, do you trust more?

Popular leaders/Religious leaders 1 Health Staff 2 Print Media 3 Electronic Media 4 Folk Media 5 Friends/Relatives 6 Hoarding/Posters/billboards/Wall Painting 7 Public service announcements 8 Local Health workers 9 Inter Personal Communications---------------------10 NGOs----------------------------------------------------11 None----------------------------------------------------12 Other (Specify)----------------------------------------99

(Prompt and record the most appropriate response)

157


BEFORE WE END THE INTERVIEW A FEW QUESTIONS ON SOCIO, CULTURE, ECONOMIC & DEMOGRAPHIC CHARACTERISTICS OF YOUR HOUSEHOLD Please do not get offended by some of the questions. If you do not wish to answer any question please let the investigator know about it. 103a


103b


104


Buddhism 1 Christianity 2 Hinduism 3 Islam 4 Jainism 5 Sikhism 6 Atheism 7 Others--------------------------------------------------99

105

What is your caste?

Not willing to share 1 Scheduled caste 3 Scheduled tribe 4 General 5 Other Caste (Specify)-------------------------------99

106


Illiterate Literate but no formal education Less than Primary Primary but less than Secondary Secondary but less than Senior Secondary Senior Secondary but not Graduate Graduation & above

107


Wage labourer 1 Skilled worker 2 Migrant worker 3 Self employed 4 Business 5 Service (Govt. & Private) 6 Agriculture/cultivator 7 Unemployed 8 Housewife 9 Student-------------------------------------------------10 Any other (specify)-----------------------------------99

108

What is the average household income per month?

Less than Rs. 2000 Rs. 2001 – Rs. 4000 Rs. 4001 – Rs. 8000 Rs. 8001 – Rs. 10,000 Rs. 10,001 - 25,000 Rs. 25,001 – 50,000 >50,000 DK/CS

1 2 3 4 5 6 7 8

109

Observe and record : Type of House

Pucca house Semi-pucca house Kutcha house

1 2 3

110

How many rooms do you have in your house? (excluding kitchen)

One room 1 One room and kitchen 2 Two rooms and kitchen 3 Others--------------------------------------------------99

111

What type of locality do you live in?

Village community 1 Town 2 Urban slum 3 Urban township/society 4 Others--------------------------------------------------99

158

1 2 3 4 5 6 7


112

Does your household own this house or any other house?

113

Does your household have:

A

Yes No

1 2 Yes

No

Electricity

1

2

B

Mattress

1

2

C

Pressure cooker

1

2

D

Chair

1

2

E

A cot or Bed

1

2

F

A table

1

2

G

Electric Fan

1

2

H

Radio Or Transistor

1

2

I

A black & white Television

1

2

J

A colour Television

1

2

K

A sewing Machine

1

2

L

A mobile Telephone

1

2

M

Land line

1

2

N

A computer/Laptop

1

2

O

A Refrigerator

1

2

P

A Watch or Clock

1

2

Q

A Bicycle

1

2

R

A Motorcycle or Scooter

1

2

S

An Animal drawn cart

1

2

T

A Car

1

2

U

Water Pump

1

2

V

A Thresher

1

2

W

A Tractor

1

2

114

What is the main source of drinking water for your house?

Private Tap 1 Private Hand Pump 2 Public Tap 3 Public Hand Pump 4 Tube well 5 Supply tanker 6 Well/river/pond 7 Rain water 8 Packaged Water 9 Others (Specify----------------------------------------10

115

What type of toilet system do you use?

Public 1 Personal 2 Open field/space 3 Shared Toilet 4 Others--------------------------------------------------99

117

Is there a proper drainage system in your locality?

Yes No

1 2

118

Is there a separate space/or room for cooking?

yes room Yes separate space No separate space

1 2 3

159


119

Type of fuel mostly used for cooking:

Electricity 1 Wood 2 Coal/Lignite 3 Kerosene 4 LPG(Gas)/Natural Gas 5 Charcoal 6 Bio-gas 7 Dung Cakes 8 Agriculture Crop Waste 9 Straw/Shrubs/Grass----------------------------------10 Others Specify-----------------------------------------99

120

Does your household have a BPL card?

Yes No

1 2

121

Do you have an UID/Aadhaar card?

Yes No

1 2


160

5 Health Service Providers

ANNEXURE

Midterm Knowledge, Attitude and Practice (KAP) Survey on Tuberculosis QUESTIONNAIRE ID NUMBER

____________________________

STATE

1. Andhra Pradesh 2. Bihar 3. Chhatisgarh 4. Haryana 5. Karnataka 6. Kerala 7. Maharastra 8. Mizoram 9. Orrisa 10. Punjab 11. Rajasthan 12. Tamil Nadu 13. Uttar Pradesh 14. West Bengal 15. Madhya Pradesh


TRIBAL……………………………….1

NON-TRIBAL………………………………..2


RURAL……………………………….1

URBAN……………………………………2

Distance from the nearest PHC/CHC/DH (kms) Name of Respondent Respondent Category

1. Private Practitioner 2. Government Doctor 3. Nurse 4. ANM worker 5. PHC worker 6. Anganwadi worker 7. Chemists/Druggist

Date of Interview Starting Time of Interview FIELD CONTROL INFORMATION

AM 1 PM 1

Ending Time of Interview Interview Yes

1

No

By 2

Spot/back check Yes

1

No

Scrutiny Yes

1

No

Code

Sign By

2

Code

Sign By

2

AM 1 PM 2

Code

Sign

If more than one visit made record * Status of interview First visit

Time:_________

1

2

3

4

Second visit

Time:_________

1

2

3

4

Third visit

Time:_________

1

2

3

4

* Refused 1 not available 2 Partly Completed 3 Completed 4

161


Good Morning/Evening, My name is _________. I am from a social research organisation GfK Mode. We are conducting a study on behalf of an international Non-Government Organisation called, The International Union Against Tuberculosis and Lung Diseases (The Union). The Union is working with the Government of India, and supporting its Revised National Tuberculosis Control Programme in spreading awareness about tuberculosis in the community. The International Union Against Tuberculosis and Lung Diseases (The Union) an international NGO, is conducting a research study entitled, “Midline Survey on Knowledge, Attitude and Practice (KAP) towards Tuberculosis in 45 districts from 16 states in India.” Through this study we want to get some information on knowledge, attitude & practices regarding Tuberculosis among Health Service Providers, so that this information could help design appropriate strategies that will help in TB care and control programmes. All of your responses will be treated as confidential and will be used only for research purposes and also to help policy makers to understand the bottlenecks in functioning, if any, to streamline the functioning You are being invited to take part in this research study. Please ask the researcher any questions that you do not fully understand. It is very important that you are fully satisfied and clearly understand what this research entails and how you could be involved. Your participation is entirely voluntary and you are free to decline to participate. There are no financial incentives given for taking part in this study. If there is anything else that you want to know, if you have any further queries or encounter any problems you can contact Dr. Sarabjit Singh Chadha, Project Director, The Union, New Delhi, contact No : 011-46054400

Consent Form I …………………………………..…………., agree to take part in the above mentioned study. I declare that: l

I have read this information and consent form and understand the contents I have had a chance to ask questions and all my questions have been adequately answered l I understand that taking part in this study is voluntary and I have not been pressurised to take part l I may choose to leave the study at any time and will not be penalised or prejudiced in any way l

Do you have any questions about the survey? (Instruction raised by respondent, kindly respond to his/her satisfaction)

to Investigator: In case of any questions

Participant:

Investigator:

Name: - __________________________

Name: - __________________________

Date: - __________________________

Date: - __________________________

Signature or thumbprint: - _______________

Signature or thumbprint: - ____________

162

Annexure 5 Health Service Providers

GENERAL INFORMATION Q. No

Questions

1

What is your Name?

2


3


4a

What is your Educational Qualification?

Response

Skip

Male

1

Female

2

MBBS

1

BAMS

2

BHMS

3

BUMS

4

Degree/Diploma in Nursing

5

MD or specialist

6

B. Pharma/D Pharma

7

Graduate/Post Graduate

8

No formal qualifications

9

Other (specify)

99

4b

How long have you been working in healthcare as a service provider (years)?

__________ years

4c

What is the nature of your Practice ? (please prompt the responses and select the most appropriate answers)

Consultation 1 Dispensing 2 Consulting & Dispensing 3 Others (specify) 99

KNOWLEDGE, ATTITUDE & PRACTICE ON TUBERCULOSIS Now, the next few questions relate to the patients that you come across in your practice Q. No

Questions

5

On an average how many patients do you see per day?

6

7

Response

Skip

What are the 5 most common diseases you come across in your practice? (probe)

TB Mentioned 1


If TB is not mentioned in response to question 7, then ask: Do you come across TB patients in your practice?

Yes

8

If yes, at present, how many pulmonary TB patients in total are you personally treating?

8a.

What causes TB is?

9

How many of them are female TB patients?

10

What are the different kinds of TB patients that you have come across ? (please prompt and select the responses, multiple responses possible)

TB Not mentioned 2

No

1 2

No Response 3

Pulmonary TB (Chest/Lungs 1 Lymph node/Gland TB 2 Spinal TB

3

Bone TB

4

Abdominal TB 5 Any Other (specify) 163

99

IF coded 2 & 3, skip to Q.13a


Q. No

Questions

Response

11

What other health conditions do you come across among the TB patients you treat?

Diabetes

1

None

2

12

What are the common s y m p t o m s y o u look for while diagnosing a person with TB? (multiple Response possible, please keep asking by adding ‘and’ and record them till the person says no more)

Skip

Others specify

A cough of 2 weeks or more

99

1

Pain in the chest

2

Coughing up Blood

3

Fever

4

Weight loss

5

Poor appetite

6

Any other –specify 13a

In the last one month, how many patients did you see that had cough for 2 weeks or more?

13b

How many of these patients were tested for tuberculosis?

13c

How many were found to have TB disease and started on TB treatment?

14

What tests do you usually advice for confirming diagnosis of Pulmonary TB? (Multiple Response Possible)

If 0 (zero patients), skip to Q14

Chest X –ray

1

Sputum smear examination

2

Mantoux skin Test

3

Sputum Culture

4

Serological or blood antibody tests (ELISA or card tests)

For these tests, where do you normally send your patients?

5

PCR or polymerase chain reaction

6

TB-Gold test (Quantiferon-TB Gold)

7

I do not order TB tests – I refer patients to others

8

DK/CS

9

Any other- specify 15

99

99

Nearest DOTS or government centre (e.g. PHC, DMC, district hospital)

1

Medical college or public hospital

2

Private hospital or nursing home

3

In house diagnostic lab of your own clinic or hospital

4

Local private lab

5

Collection centre for a private network lab (e.g. SRL, Lal Pathlabs, Metropolis 6 Patients choose themselves

7

We conduct the test ourselves in our clinic 8

164


Q. No

Questions

Response

16

If you have to advice only one test for pulmonary TB, which one would you advice?

Chest X –ray

Skip 1

Sputum smear examination 2 Skin Test (tuberculin or Mantoux)

3

Sputum Culture

4

Serological or blood antibody tests (ELISA or card tests

5

PCR or polymerase chain reaction

6

TB-Gold test (Quantiferon-TB Gold) 7 DK/CS Any other- specify 17

What is the reason for selecting the test mentioned above?

(Prompt and please keep asking by adding ‘and’ and record them till the person says no more Multiple responses possible.)

8 99

They are affordable for my patients 1 Results are accurate

2

Quick time to results

3

Easily available in my setting 4 Recommended by national/international guidelines

5

Incentives for ordering the test associated 6 It does not require sputum specimens 7 It is helpful for childhood TB or extra pulmonary TB

8

My patients prefer this test 9

18

19

In your opinion, which sample test detects more number of pulmonary TB patients?

When you identify a patient with symptoms suggestive of pulmonary TB, how often do you advice a sputum smear test?

This is the test promoted by my local lab

10

I am not sure

11

Sputum Blood

2

Radiology (X-Ray

3

Other (specify):

99

Every time

1

Most of the time

2

Occasionally/Sometimes 3 Never

20

Where do you send your patient for sputum examination?

1

9

Nearest DOTS or government centre (e.g. PHC, DMC, district hospital 1 Medical college or public hospital

2

Private hospital or nursing home 3 In house diagnostic lab of your own clinic or hospital

4

Local private lab

5

Collection centre for a private network lab (e.g. SRL, Lal Path labs, Metropolis 6 Patients choose themselves 7 We conduct the test ourselves in our clinic 8

165

If the response is “never” (option 9) then skip to Q.23, otherwise continue with the next question

Q. No

Questions

Response

21a

Do you know about designated microscopy centres (DMC) established by the Government for FREE sputum testing?

Yes

1

No

2

Do you send your patients to these microscopy centres?

Yes

1

No

2

Do you face any problem in getting sputum smear examination done for your TB symptomatics in a DMC?

Yes

1

No

2

If yes, what type of problems do you face?

Non availability of facility

1

Non availability of staff

2

Patient is unable to pay for test

3

Poor quality result

4

21b

21c

22

Skip

If I send patients to DMC, they never come back to me 5 Any other (specify) 23

In your opinion, what are the biggest limitations or problems with existing TB tests? (Multiple response possible please keep asking by adding ‘and’ and record them till the person says no more)

24

If a new TB test were to be developed, what characteristics would you like to see in a new test?

99

They are not accurate enough

1

They take too much time

2

They require sputum samples

3

They are not easily available

4

They are too costly

5

They are only available in government facilities

6

They are not helpful for extra-pulmonary TB

7

They are not simple enough to be done in my clinic or by myself

8

They do not get me much incentives or referral fees

9

DK/CS

10

Other (specify):

99

It should be accurate and reliable

1

It should give results on the same day 2 It should not require sputum samples 3 It should be based on blood samples 4

(Multiple response possible please keep asking by adding ‘and’ and record them till the person says no more)

It should be easily available in my area 5 It should be cheap

6

It should be available in government and private facilities

7

It should be useful for extra pulmonary TB 8 It should be simple enough to be done in my clinic or by myself 9 It should get me incentives or referral fees 10 DK/CS

11

Other (specify):

99



Q. No

Questions

Response

25

What do you do after diagnosing pulmonary TB?

Started TB treatment on my own

1


2

Refer to private facility/Hospital

3

Refer to Government centre/DOTS provider/Centre

4

Refer to NGO

5

Not Applicable

7

(prompt the response and select the appropriate)


What system of medicine do you follow for the treatment of pulmonary TB?

1

Homeopathy

2

Ayurveda

3

Others (specify)

28

29

What is the average total duration of TB treatment?

1-2 weeks

1

2-4 weeks

2

1-5 months

3

6-8 months

4

more than 8 months

5

Record verbatim:

How do you know that your Pulmonary TB patient is cured?

Improvement in symptoms

1

Positive sputum test turned negative

2

Improvement in chest X – Rays

3

_______________________________________

Prescribed duration of treatment completed 4 All the above

31

4 99

For a new patient with pulmonary TB, what are the drugs you begin treatment with? (name all the drugs)

(multiple responses possible)

30

99

Allopathic

Traditional/Home remedies

27

Skip

How do you diagnose patients with Extra pulmonary TB?

5

X-ray

1

Ultra sound

2

Serological or blood tests

3

Biopsy

4

Sputum Culture

5

DK/CS

6

Others (specify

99

How many extra pulmonary TB cases do you diagnose in a month? (Record verbatim)

32

Are you aware of Multi Drug Resistant (MDR) TB?

Yes

1

No

2

167

If coded 1, then ask Q.26 or else skip to Q.27


Q. No

Questions

33

How do you diagnose a patient as MDR-TB? (prompt the responses and select the appropriate, multiple response is possible)

34

35

36

Sputum Culture

1

Drug Susceptibility test

2

PCR or molecular test

3

Clinical Examination

4 99

When you see patients with long duration (chronic) fever, do you prefer to order a TB antibody blood test (IgG/IgM using ELISA or rapid test)?

Yes

1

No

2

Do you maintain any separate record (like record of TB drugs given, detailed address, next visit due etc.) for TB patients at your clinic?

Yes

1

No

2

How many of your TB patients completed their prescribed duration of treatment in the last 1 year?

Total Number of patients started on TB treatment:

What difficulties do you come across while treating TB patients? (Multiple Response Possible)

Number of patients who completed their TB treatment:

People hesitate to come for treatment

1

Non availability of anti TB drugs

2

No pathology or X ray Lab available in the vicinity

3

People do not reveal previous history of TB easily

4

Patients cannot afford TB drugs

5

Patients often do not complete treatment Any other (specify) 38

Skip

Any other- specify

(Record verbatim) 37

Response

6 99

In your opinion, what challenges do the patients face to come for the treatment? (Record verbatim)

39

40a

40b

Do you examine other family members of TB affected person, to check if they too have TB?

Yes

1

No

2

Do you ask TB affected patients, whether he/she is currently using any tobacco products ? if Yes, what type? ?

Yes

1

No

2

If yes, do you advise or insist them to stop using tobacco products?

Advice

Type:

1

Insist

2

None

3

168

Type = smoking (cigarette/ beedi/ hookah)/ chewing/ sniffing


Q. No

Questions

Response

41

Do you think treating TB constitutes any risk to your health or health of your other patients?

Yes

1

No

2

DK/CS

3

What precautions do you take to protect yourself while examining/ treating TB patients?

Maintain distance

1

Wear masks & gloves

2

Wash hands with soap

3

None

4

42


Any Other (Specify) 43

What precautions do you suggest the TB patient to avoid the spread of disease? (Multiple Response Possible)

44

45


Which are two major sources from where you came to know about DOTS and related issues?

47

48

For treating TB: Do you feel; DOTS is … (Read out the option)

99

Cover mouth while coughing

1

Use separate utensils

2

Not to spit anywhere

3

Use separate towels/clothes

4

Isolate the patient

5

Any other (specify)

99

Yes

1

No

2

DK/CS

3

Television

1

Radio

2

Newspaper/Magazines

3

Pamphlets/Booklets/leaflets/posters etc

4

Awareness workshop, seminar

5

During studies/part of course

6

Internet

7

Medical Journals

8

NGO

9


Skip

99

Excellent

1

Good

2

Average

3

Bad

4

Are you aware of the schemes to involve private practitioners in the DOTS programme?

Yes

1

No

2

Are you involved in DOTS programme in any way?

Yes

1

No

2

(Ask only Private practitioners)

169

If 2 & 3 skip to Q. 47


Q. No

Questions

Response

49

(Ask only Private practitioners)

Yes

1

No

2

Are there any public health services for TB patients available in your area?

DK/CS

3

Do patients of other diseases avoid visiting you because you also treat persons suffering with TB?

Yes

1

No

2

DK/CS

3

From where do you commonly update your knowledge on TB?

Medical journal

1

Colleague

2

CME/trainings

3

Professional bodies

4

Medical representatives

5

No need

6

50

51



According to you what should be the best medium to generate awareness amongst the community about TB? (Single Response)

99

Television

1

Radio

2

Newspaper/Magazine

3

Pamphlet/Booklet/Leaflet/Posters

4

Nukkad Nataks

5

Community meetings

6

IPC (Interpersonal Communication) Any Other(specify) 53

Skip

7 99

Do you have any suggestions to strengthen TB control services? (Record verbatim)

54

55

This year (2012), the government of India passed an order that requires all health providers to notify/report all cases of TB to government authorities. Are you aware of this governmental order?

Yes

1

No

2

If yes to the above question, are you notifying TB cases to local/ district health authorities?

Yes

1

No

2

Yes

1

No

2

(Ask other than government service providers) 56

This year, the government of India passed an order that bans the use of serological, antibody tests for TB (IgG/IgM antibodies using ELISA or rapid tests). Are you aware of this governmental order?

170



Point of Care Testing (POCT) Q. No

Questions and Filters

Coding Categories

Codes

Skip

This section is about use of simple, rapid, card, dipstick or strip tests that are available (like the home pregnancy test, urine sugar dipstick, or rapid HIV or malaria test) and can give results within minutes, and whether you use these tests in your clinical practice.

For example, below is a photograph or sample of a pregnancy test 57

In your clinical practice, when you need a diagnostic test done for your patient for any disease, do you do any rapid testing yourself (or by your assistant or nurse), right in your clinic or hospital setting or attached lab, while the patient is waiting, so that you can quickly make treatment decisions?

171

Yes

1

No

2

If coded 2 then skip to 60


58

Kindly answer the following; Rapid test for

Do you do this test in your clinic or practice? 1 = Yes 2 = No 3 = Not in the clinic, but a lab that is attached to the clinic

If code 1 & 3, on an average, how many tests do you do in a month?

Time to get the test results? [record number of minutes]

Who interprets or reads the results of the rapid test? 1 = provider 2 = support staff (e.g. nurse, compounder) 3 = lab that is attached

Do you make any treatment decisions only on the basis of the rapid test results? 1 = Yes 2 = No

How much do patients pay for each test? (INR) [if no charge, please write ZERO]

B. Pregnancy D. Glucose (blood or urine sugar) F. HIV H. Malaria J. Tuberculosis L. Syphilis N. Hepatitis (A, B, C) P. Influenza (flu) R. Dengue T. Typhoid V. Streptococcal pharyngitis (throat) X. Others (specify):

59

If you do any of the above rapid tests, what are the most important reasons for doing this in your practice or clinic, instead of sending your patients to an outside laboratory? Record Verbatim (multiple answers are possible) and list the most important reason first 1)

__________________________________________________________ 2)

__________________________________________________________ 3)

__________________________________________________________ 4) 5)

172


60

If NO to Q.57 what are the most important reasons for NOT doing rapid testing in your practice? Record Verbatim (multiple answers are possible) and list the most important reason first 1)

__________________________________________________________ 2)

__________________________________________________________ 3)

__________________________________________________________ 4) 5) 61

Imagine a new rapid dipstick or strip TB test (just like a pregnancy or sugar test) that produces results within 20 minutes using blood finger-prick sample, and is more sensitive than sputum smears, and is simple enough to be done in your own clinic. No equipment or instrument is required, and no capital investments need to be made. Would you order this test for your patients?

Yes

1

No

2

Would you do it in your own clinic (by yourself or your assistant)?

Yes

1

No

2

Would you order this test for your patients if the cost to patients was Rs. 100?

Yes

1

No

2

Would you order this test for your patients if the cost to patients was Rs. 250

Yes

1

No

2

Would you order this test for your patients if the cost to patients was Rs. 500?

Yes

1

No

2

173


GENERAL SOCIAL & DEMOGRAPHIC INFORMATION Please do not get offended by some of the questions. If you do not wish to answer any question please let the investigator know about it. 62a


62b


63


64

65

66

67

If married, how many children do you have?

Married

1

Unmarried

2

Divorced

3

Widowed

4

Separated

5

One

1

Two

2

Three

3

More than three

4

No children

5

How many people live in your house One including yourself? Two



1 2

Three

3

Four

4

More than four

5

Single

1

Joint

2

Extended

3

Buddhism

1

Christianity

2

Hinduism

3

Islam

4

Jainism

5

Sikhism

6

Atheism

7

Others (specify

68

What is your caste?


1

Scheduled caste

3

Scheduled tribe

4

General

5

Other Caste (Specify) 69

Could you please give your address?

70

How long have you been living at this address?

99


174

99

If unmarried, Skip to Q.65

ANNEXURE

6 Opinion Leaders Midline Knowledge, Attitude and Practice (KAP) Survey on Tuberculosis

QUESTIONNAIRE ID NUMBER

____________________________

STATE



1. TRIBAL

2. NON-TRIBAL


1. RURAL

2. URBAN

Distance from the nearest PHC/CHC/DH (kms) Name of Respondent 1. Village Pradhan 2. Panchayat Member 3. Ward Member 4. Religious Leader 5. ANM 6. AWW 7. Teacher 8. GKS Member

Respondent Category

FIELD CONTROL INFORMATION

Date of Interview Starting Time of Interview

AM 1 PM 1


1

By No

2

Spot/back check Yes

1

No

Scrutiny Yes

1

Code

Sign By

2

Code

Sign By

No

2

AM 1 PM 2

Code

Sign

If more than one visit made record: * Status of interview First visit

Time:_________

1

2

3

4

Second visit

Time:_________

1

2

3

4

Third visit

Time:_________

1

2

3

4

* Refused...........1 Not available..............2

Partly Completed.............3

175

Completed.............4


Good Morning/Evening, My name is _________ I am from a social research organisation GfK Mode. We are conducting a study on behalf of an international Non-Government Organisation called, The International Union Against Tuberculosis and Lung Diseases (The Union). The Union is working with the Government of India, and supporting its Revised National Tuberculosis Control Programme in spreading awareness about tuberculosis in the community. The International Union Against Tuberculosis and Lung Diseases (The Union) an international NGO, is conducting a research study entitled, “Midline Survey on Knowledge, Attitude and Practice (KAP) towards Tuberculosis in 45 districts from 16 states in India.” Through this study we want to get some information on knowledge, attitude & practices regarding Tuberculosis among General Public, so that this information could help design appropriate strategies that will help in TB care and control programmes. All of your responses will be treated as confidential and will be used only for research purposes and also to help policy makers to understand the bottlenecks in functioning, if any, to streamline the functioning You are being invited to take part in this research study. Please ask the researcher any questions that you do not fully understand. It is very important that you are fully satisfied and clearly understand what this research entails and how you could be involved. Your participation is entirely voluntary and you are free to decline to participate. There are no financial incentives given for taking part in this study. If there is anything else that you want to know, if you have any further queries or encounter any problems you can contact Dr. Sarabjit Singh Chadha, Project Director, The Union, New Delhi, contact No : 011-46054400

CONSENT FORM I …………………………………..…………., agree to take part in the above mentioned study.

I declare that:

I have read this information and consent form and understand the contents = I have had a chance to ask questions and all my questions have been adequately answered = I understand that taking part in this study is voluntary and I have not been pressurised to take part = I may choose to leave the study at any time and will not be penalised or prejudiced in any way =

Do you have any questions about the survey? (Instruction To Investigator: In Case Of Any Questions Raised By Respondent, Kindly Respond To His/Her Satisfaction) Participant:

Investigator:

Name: - _______________________________

Name: - _________________________

Date: - ________________________________

Date: - __________________________

Signature or thumbprint: - _________________

Signature or thumbprint: - ___________

176

Annexure 6 Opinion Leaders

General information Q. No

Questions

1

What is your Name?

2


3

Response

Skip

Male

1

Female

2


4a


4b

How long have you been living at this address? Knowledge and awareness about tuberculosis and treatment

5 6

7

What are the common diseases in your community?

TB Mentioned

1

TB Not mentioned

2

If TB is not mentioned, have you heard of TB?

Yes

1

No

2

DK/CS

3 Record verbatim and skip to Q. 26

If No, in your opinion what could be TB? (Record verbatim)

8

If yes, what is TB? (Record verbatim)

9

Could you mention few symptoms of TB? (Multiple Response Possible)

A cough of 2 weeks

1

Pain in the chest

2

Coughing up blood

3

Fever

4

Night sweat

5

Weight loss

6

Loss of appetite

7

Don’t know Any other (Specify) 10

Do you think TB is a serious disease in your community?

Do you know how can a person get infected with TB? (Please prompt and select the responses, multiple responses possible)

8 99

Yes

1

No

2

DK/CS

3

Other (specify) 11


Through handshake with infected person

99 1

Through the air when the infected person cough or sneeze.. 2 Through sharing food with infected person

3

By sharing bed/clothes with infected person

4

By sharing cigarettes/beedis

5

Don’t Know Any Other (Specify)

177

6 99


12

Who do you think are more prone to get infected with TB? (Prompt for multiple Response by asking ‘and’ and record them till the person says no more, multiple responses possible)

13

14

According to you can TB affected person be treated?

How can a person affected with TB be treated? (Please prompt and select the responses, multiple responses possible)


1

Poor People

2

Malnourished

3

Children

4

Women

5

Family members of TB infected person

6


7

HIV +ve

8

Smokers

9

Alcoholics

10

DK/CS

11

Anyone

12

Any other (specify)

99

Yes, Fully

1

Yes , Partially

2

No

3

DK/CS

4

Herbal Remedies

1

Home Remedies

2

DOTS or TB drugs

3

Other Allopathic medicines

4

Ayurvedic

5

Homeopathy

6

DK/CS

7

Any other (specify 15

16

How long does it take to treat TB?

How can pulmonary TB be diagnosed? (Multiple Response Possible)

Less than 2 weeks

1

2-4 weeks

2

1-5 months

3

6 -8 months

4


5

DK/CS

6

Sputum smear Test

1

X – Ray

2

Mantoux Skin Test

3

DK/CS 17

Are you aware of the place where one can get Tuberculosis diagnosed? (Multiple Response Possible)

99

4

Any Other (Specify)

99

Government Hospital

1

CHC/PHCs

2


3

NGO

4

RHCP

5

DOTS Centre

6

DK/CS

7

Any Other(Specify)

178

99


18

Are you aware of the place where one can get medicine for Tuberculosis? (Multiple Response Possible)

Government Hospital

1

CHC/PHCs

2

ANM/ASHA/AWW

3


4

DOTS Provider/Centre

5

NGO

6

DK/CS

7

Any Other(Specify 19

20

21 22

23

Are you aware that a specific treatment is available for Tuberculosis?

Yes

1

No

2

In your opinion, is regular and complete treatment for TB important for cure?

Yes

1

No

2


Yes

1

No

2

For treating Tuberculosis

1

If yes, what is this used for?

Are you aware of the place where you can get DOTS? (Multiple Response)

For treating other ailments

2

DK/CS

3

Government Hospital

1

CHC/PHCs

2

ANM/ASHA/AWW

3


4

DOTS Provider/Centre

5

NGO

6

DK/CS

7

Any Other(Specify) 24

(Instruction : If not coded 5 in Q.23, then ask) If DOTS/TB centre is not mentioned in response, have you heard of DOTS centre/provider?

25

99

Do you know that Government is providing DOTS free of cost?


99

Yes

1

No

2

DK/CS

3

Yes

1

No

2

DK/CS

3

Health seeking behaviour 26

When someone falls sick, where will you generally refer him/her to go?

Government health facility (Including PHC,CHC, district hospital/sub centre/ANM

1

Private Clinic

2


3


4

Homeopathic treatment

5


6

Clinic run by NGOs

7


8

ASHA worker in your village

9

Any other (Specify

179

99

If coded (1) skip to Q.28


27

28

If not to a Government Health centre? Why?

Hospital is far from home

1


2

Unfriendly behaviour

3

Long Waiting Hours

4

Lack of Diagnostic facility

5

Lack of Qualified Doctor

6

Lack of Diagnostic Equipments in the facility

7

Private Clinic is nearby

8

Unhygienic Condition

9

Any Other (Specify)

99

If a person has TB like symptoms Government Centres/DMC where according to you, he should Private Hospitals go for diagnosis? DOTS/TB Centres

1 2 3

Any Other 29

If a person is diagnosed with TB, where according to you, he should go for treatment?

99

Government Centres

1

Private Hospitals

2

DOTS/TB Centres

3

Any Other

99

Stigma & Discrimination The following questions are for understanding your opinion on tuberculosis patients from the societal perspective. Some of the questions are sensitive. We request you to please do not get offended by any questions. You are free not to respond to any of the issues. 30


Strongly Agree

Somewhat agree

Disagree

A


1

2

3

B


1

2

3

C


1

2

3

D

Daily ware Labourers suffering from TB should not be allowed to work

1

2

3

E

Husbands/in-laws do not accompany female TB patients to hospital/DOTS centres

1

2

3

F

Female accompany their spouse to hospitals suffering from TB to hospitals/DOTS centre

1

2

3

G


1

2

3

31


Yes

No

DK/CS

A


1

2

3

B

If you suspect one of the female member is suffering from TB, do you take her to hospital

1

2

3

180

Reasons for their response: Record verbatim


C

Marry ones daughter to a boy knowing had a TB

1

2

3

D

Isolate your family member having TB from the household

1

2

3

E

Marry one’s son to a girl who you know had TB

1

2

3

F

Send one’s daughter in law to parent’s house if she had TB in order to protect other family members from TB

1

2

3

32

In your community, how is the person suffering from TB usually treated?

Most people reject him or her

1

Most people are friendly but they generally try to avoid him/her

2

Community mostly support and help him/her Others (specify) 33

34

Do you know anyone in your family and neighbourhood suffering from TB in the last 2 year

Yes

1

No

2

DK/CS

3

If yes, have you given any advise to them?

Go to Government Hospital

1

Go to Private hospital

2

Isolate the family from the community

3

None

36

Have you taken any initiative towards generating awareness about TB & DOTS within your community? If yes, what are they?

99

Yes

1

No

2

Organised camps

1

Organised rallies

2

Organised lectures/Seminars/Workshops

3


4

Nukkad Nataks/Street Plays/Skits

5

Any other (Specify)

99

Media Habit & Preferences 37

Which source of information you are exposed to? (Multiple Response PossibleProbe)

If coded 2 & 3 skip to Q.35

4

Any Other(Specify) 35

3 99

Radio

1

TV

2


3

Cinema

4

Hoardings/posters/leaflets/Wall painting

5


6


7

Word of mouth (Interpersonal communication)

.8

Local Health Service providers

9


10

None

11

181



38

Which channel of Radio do you generally listen to? (Multiple Response Possible)

Do not listen to radio

1

Vividh Bharti

2

FM (Specify)

3

Regional Channel

4

Community Radio Any other (specify) 39



41


1

Drama/Serial

2

Film songs

3

Folk songs

4

Health discussion

5

Do not watch TV Any other (specify)

43

44

45

Which language paper generally is read by you?

99

News

1

Drama/Serial

2

Entertainment

3

Health Related Programmes

4

Advertisements

5

Folk music

6

Music

7 99

Yes

1

No

2

English

1

Hindi

2

Local language

3


Yes

1

No

2

DK/CS

3

If Yes, where did you see such advertisement or/and information on TB/DOTS?


1

Radio

2

TV

3

Hoardings/posters/leaflets

4


If the response is coded as 1 then skip the next question and go to Q.42

8

Any other (Specify) Do you read newspaper?

99 1

Films 42

99

News


5

If the response is coded 1, then skip the next question and go to question 40

Melas/Nukkad Nataks etc Any other(Specify)

182

5 .99


IF coded 2 or 3, then skip to Q.46


Information Sources 46


TV

1

Radio

2

Cinema

3

Newspaper/Magazines

4

Hoarding/Posters/billboards/Wall writing/Brochure/ other printed material 5

46 a


Internet

6


7


8

Hospital/doctor

9

Friends & Relatives

10


11

Health camp

12

Health workers

13

DOTS providers

14


15


16

None of these

17

Other (specify)

99


1


2


3

DOTS

4

Place of Treatment

5

Information on prevailing myths about TB patients 6 Others (Specify) 47

48

Did anyone visited your house/ neighbourhood during last two years to make your family/ community aware and provide information on TB ?

Yes

1

No

2

DK/CS

3

If yes, who visited?

Government Doctor

1


Private Doctor

2

AWW

3

ASHA

4

Health worker

5

Worker from an NGO

6

Don’t remember

7

Any others 49

99


99


1


2


3

DOTS

4

Place of Treatment

5

Information on prevailing myths about TB patients 6 Any other (Specify)

183

99



50


TV

1

Radio

2

Cinema

3

Newspaper/Magazines

4

Hoarding/Posters/billboards/Wall writing/Brochure/ other printed material 5 Internet

6


7


8

Hospital/doctor

51

According to you what are the two most important issues regarding tuberculosis which need utmost attention?

9

Friends & Relatives

10


11

Health camp

12

Health workers

13

DOTS providers

14


15


16

None of these

17

Other (specify

99

1-------------------------------------------2-------------------------------------------

(Record verbatim) 52

Do you have any suggestions how you/your organisation could be more helpful in addressing Tuberculosis related issues? (Record verbatim)

GENERAL, SOCIO- CULTURAL & DEMOGRAPHIC INFORMATION Please do not get offended by some of the questions. If you do not wish to answer any question please let the investigator know about it. 53

54

55




Married

1

Unmarried

2

Divorced

3

Widowed

4

Separated

5

One

1

Two

2

Three

3

More than three

4

No children

5

One

1

Two

2

Three

3

Four

4

More than four

5

184



56


57 (a)


57 (b)


58


Single

1

Joint

2

Extended

3

Buddhism

1

Christianity

2

Hinduism

3

Islam

4

Jainism

5

Sikhism

6

Atheist

7

Others (Specify) 59

60

61

What is your caste?



99


1

Scheduled caste

2

Scheduled tribe

3

General

4

Others

5


6

Illiterate

1


2

Less than Primary

3

Primary but less than Secondary

4

Secondary but less than Senior Secondary

5

Senior Secondary but not Graduate

6

Graduation & above

7

Village Pradhan

1

Panchayat Member

2

Ward Member

3

Religious Leader

4

ANM

5

AWW

6

Teacher

7

GKS Member

8

Any other (specify)


185

99

ANNEXURE

7 NGO/CBO Midline Knowledge, Attitude and Practice (KAP) Survey on Tuberculosis

Questionnaire ID Number

____________________________

State


District Code District Specification

TRIBAL………………………..1

NON-TRIBAL……………………………2

RURAL……………………….1

URBAN……………………………………2

Tehsil/Block/City Village/Ward Type of Settlement Distance from the nearest PHC/CHC/DH (kms) Name of Respondent

Date of Interview FIELD CONTROL INFORMATION

Starting Time of Interview

AM 1 PM 1


1

No

By 2

Spot/back check Yes

1

No

Scrutiny Yes

1

No

Code

Sign By

2

Code

Sign By

2

AM 1 PM 2

Code

Sign

If more than one visit made record:

* Status of interview

First visit

Time:_________

1

2

3

4

Second visit

Time:_________

1

2

3

4

Third visit

Time:_________

1

2

3

4

* Refused 1 Not available 2 Partly Completed 3 Completed 4

186

Annexure 7 NGO/CBO

Good Morning/Evening, My name is _________. I am from a social research organisation GfK Mode. We are conducting a study on behalf of an international Non-Government Organisation called, The International Union Against Tuberculosis and Lung Diseases (The Union). The Union is working with the Government of India, and supporting its Revised National Tuberculosis Control Programme in spreading awareness about tuberculosis in the community. The International Union Against Tuberculosis and Lung Diseases (The Union) an international NGO, is conducting a research study entitled, “Midline Survey on Knowledge, Attitude and Practice (KAP) towards Tuberculosis in 45 districts from 16 states in India.” Through this study we want to get some information on knowledge, attitude & practices regarding Tuberculosis among NGO/ CBOs, so that this information could help design appropriate strategies that will help in TB care and control programmes. All of your responses will be treated as confidential and will be used only for research purposes and also to help policy makers to understand the bottlenecks in functioning, if any, to streamline the functioning You are being invited to take part in this research study. Please ask the researcher any questions that you do not fully understand. It is very important that you are fully satisfied and clearly understand what this research entails and how you could be involved. Your participation is entirely voluntary and you are free to decline to participate. There are no financial incentives given for taking part in this study. If there is anything else that you want to know, if you have any further queries or encounter any problems you can contact Dr. Sarabjit Singh Chadha, Project Director, The Union, New Delhi, contact No : 011-46054400

CONSENT FORM I …………………………………..…………., agree to take part in the above mentioned study. I declare that: I have read this information and consent form and understand the contents I have had a chance to ask questions and all my questions have been adequately answered I understand that taking part in this study is voluntary and I have not been pressurised to take part I may choose to leave the study at any time and will not be penalised or prejudiced in any way

Do you have any questions about the survey? (Instruction to Investigator: In case of any questions raised by respondent, kindly respond to his/her satisfaction) Participant:

Investigator:

Name: ______________________________ Name:________________________________ Date: _______________________________ Date: ________________________________ Signature or thumbprint: ________________ Signature or thumbprint: _________________

187


GENERAL INFORMATION Q. No.

Questions

1

What is your Name?

2


3

Can you please tell me your age? (Age in completed years)

4a


4b

How long have you been living at this address?

Response Male Female

Skip 1 2

KNOWLEDGE AND AWARENESS ABOUT TUBERCULOSIS AND TREATMENT Q. No.

Questions

Response

5

What are the common diseases in your community?

TB Mentioned TB Not mentioned

1 2

6

If TB is not mentioned, have you heard of TB?

Yes No DK/CS

1 2 3

7

If No, in your opinion what could be TB? (record verbatim)

Go to question 25

8

what is TB? (Record verbatim)

if q6 = 3 then skip to Q9

9

Could you mention few symptoms of TB? (Multiple Response Possible)

Skip

A cough of 2 weeks 1 Pain in the chest 2 Coughing up blood 3 Fever 4 Night sweat 5 Weight loss 6 Loss of appetite 7 Don’t know 8 Any other (Specify)-----------------------99

10

Do you think TB is a serious disease in your community?

Yes No

11

Do you know how can a person get infected with T.B?

Through handshake with infected person 1 Through the air when the infected person cough or sneeze.. 2 Through sharing food with infected person 3 By sharing bed/clothes with infected person 4 By sharing cigarettes/beedis 5 Don’t Know 6 Any Other (Specify)-----------------------99

(please prompt and select the responses, multiple responses possible)

188

1 2


Annexure 7 NGO/CBO

Q. No.

Questions

Response

12

Who do you think are more prone to get infected with TB?

Those living in unhygienic condition 1 Poor People 2 Malnourished 3 Children 4 Women 5 Family members of TB infected person 6 Exposed to cough and cold for long time 7 HIV +ve 8 Smokers 9 Alcoholics----------------------------------10 DK/CS---------------------------------------11 Anyone-------------------------------------12 Any other (specify)-----------------------99

(prompt for multiple Response by asking ‘and’ and record them till the person says no more, multiple responses possible)

Skip

13

According to you whether TB affected person can be treated?

Yes, Fully Yes , Partially No DK/CS

14

How can a person affected with TB be cured?

Herbal Remedies 1 Home Remedies 2 DOTS or TB drugs 3 Other Allopathic medicines 4 Ayurvedic 5 Homeopathy 6 DK/CS 7 Any other (specify------------------------99

(please prompt and select the responses, multiple responses possible)

1 2 3 4

15

How long does it take to cure TB?

Less than 2 weeks 2-4 weeks 1-5 months 6 -8 months More than 8 months and others DK/CS

16

How can TB be diagnosed? (Multiple Response Possible)

Sputum Smear Test 1 X–Ray 2 Mantoux Skin Test 3 Blood test 4 DK/CS 5 Any Other (Specify)-----------------------99

17

Are you aware of the place where you can get Tuberculosis diagnosed? (Multiple Response Possible)

Government Hospital 1 CHC/PHCs 2 Private Hospital/Clinic 3 NGO 4 RHCP 5 DOTS Centre 6 DK/CS 7 Any Other(Specify)------------------------99

189

1 2 3 4 5 6


Q. No.

Questions

Response

18

Are you aware of the place where you can get medicine for Tuberculosis?

Government Hospital 1 CHC/PHCs 2 ANM/ASHA/AWW 3 Private Hospital/Clinic 4 DOTS Provider 5 NGO 6 DK/CS 7 Other--------------------------------------99


Skip

19

Are you aware that a specific treatment is available to treat Tuberculosis?

Yes No

1 2

20


Yes No

1 2

21

If yes, what for this is used?

For treating Tuberculosis For treating other ailments DK/CS

1 2 3

22

Are you aware of the place where you can get DOTS?

Government Hospital 1 CHC/PHCs 2 ANM/ASHA/AWW 3 Private Hospital/Clinic 4 DOTS Provider/Centre 5 NGO 6 DK/CS 7 Any Other (Specify-----------------------99

23

If DOTS/TB centre is not mentioned, have you heard of DOTS centre/ provider?

Yes No DK/CS

1 2 3

24

Do you know that Government is providing DOTS free of cost?

Yes No DK/CS

1 2 3

If coded 2, then skip to Q.25

HEALTH SEEKING BEHAVIOUR 25

When someone falls sick, where will you generally refer him/her to go?

Government health facility (Including PHC,CHC, district hospital/sub centre/ ANM 1 Private Clinic 2 Private Hospital or nursing home 3 Ayurvedic or Siddha treatment 4 Homeopathic treatment 5 Traditional healer/Quacks/informal provider 6 Clinic run by NGOs 7 Local chemist or pharmacy 8 ASHA worker in your village 9 Any other (Specify)----------------------99

26

If not to a Government Health centre? Why?

Hospital is far from home 1 Unavailability of doctors 2 Unfriendly behaviour 3 Long Waiting Hours 4 Lack of Diagnostic facility 5 Lack of Qualified Doctor 6 Lack of Diagnostic Equipments in the facility 7 Private Clinic is nearby 8 Unhygienic Condition 9 Any Other (Specify)----------------------99

190

If coded (1) skip to Q.27

Annexure 7 NGO/CBO

Q. No.

Questions

Response

Skip

27

If a person has TB like symptoms where according to you, he should go for diagnosis?

Government Centres/DMC 1 Private Hospitals 2 DOTS/TB Centres 3 Any Other(Specify)-----------------------99

28

If a person is diagnosed with TB, where according to you, he should go for treatment?

Government Centres 1 Private Hospitals 2 DOTS/TB Centres 3 Any Other(Specify)----------------------99

Stigma and Discrimination The next few questions are related to documenting your opinion on tuberculosis patients Some of the issues are quite sensitive. Please do not get offended by them. 29


Strongly Agree

Somewhat agree

Disagree

A


1

2

3

B


1

2

3

C


1

2

3

D

Daily wage labourers suffering from TB should not be allowed to work

1

2

3

E

Husbands/in-laws do not accompany female TB patients to hospital/DOTS centres

1

2

3

F

Wives accompany their spouse to hospitals suffering from TB to hospitals/DOTS centre

1

2

3

G


1

2

3

30


Yes

No

DK/CS

A


1

2

3

b

If you suspect one of the female member is suffering from TB, do you take her to hospital

1

2

3

C

Marry your daughter to a boy knowing had a TB

1

2

3

D

Isolate your family member having TB from the household

1

2

3

E


1

2

3

F

Send your daughter in law to parent’s house if she had TB in order to protect other family members from TB

1

2

3

191

Reasons for their response: Record verbatim


Q. No.

Questions

Response

Skip

31

In your community, how is the person suffering from TB usually treated?

Most people reject him or her 1 Most people are friendly but they generally try to avoid him/her 2 Community mostly support and help him/her 3 Others (specify)----------------------------99

32

Do you know anyone in your family and neighbourhood suffering from TB in the last 2 year

Yes No DK/CS

33

If yes, what advice have you given any to them?

Go to Government Hospital 1 Go to Private hospital 2 Isolate the family from the community 3 None 4 Any other- (specify)-----------------------99

34

Have you taken any initiative towards generating awareness about TB & DOTS within your community?

Yes No

35

If yes, what are they?

Organised camps 1 Organised rallies 2 Organised lectures/Seminars/Workshops 3 Worked as DOT provider 4 Nukkad Nataks/Street Plays/Skits 5 Any other (Specify)-----------------------99

1 2 3

1 2

If coded 2 & 3 skip to 34

If coded 2 skip to 36

MEDIA HABIT & PREFERENCES 36

Which source of information you are exposed to? (Multiple Response Possible- Probe)

Radio TV Newspaper & Magazines Cinema Hoardings/posters/leaflets/Wall painting Melas/Nukkad Nataks etc Internet/Web advertising Word of mouth (Interpersonal communication Local Health Service providers Mobile phone advertising/SMS None

1 2 3 4 5 6 7 8 9 10 11

37

Which channel of Radio do you generally listen to? (Multiple Response Possible)

Do not listen to radio Vividh Bharti FM (Specify Regional Channel Community Radio Any other (specify)

1 2 3 4 5 99

38


News Drama/Serial Film songs Folk songs Health discussion Any other (specify)

1 2 3 4 5 99

192

If coded 1, then skip to 39

Annexure 7 NGO/CBO

Q. No.

Questions

Response

Skip

39


Do not watch TV Other (specify

1 99

40


News Drama/Serial Entertainment Health Related Programmes Advertisements Folk music Music Films Any other (Specify)

1 2 3 4 5 6 7 8 99

41

Do you read newspaper?

Yes No

1 2

42

Which language paper generally is read by you?

English Hindi Local language

1 2 3

43


Yes No DK/CS

1 2 3

44

If Yes, where did you see such advertisement or/and information on TB/DOTS? (Multiple Response Possible)

Newspaper & Magazines Radio TV Hoardings/posters/leaflets Melas/Nukkad Nataks etc Any other (specify)

1 2 3 4 5 99

INFORMATION SOURCES 45


45 a


TV 1 Radio 2 Cinema 3 Newspaper/Magazines 4 Hoarding/Posters/billboards/Wall writing/Brochure/other printed material 5 Internet 6 Public service announcements 7 Drama/Skits/Street plays 8 Hospital/doctor 9 Friends & Relatives-----------------------10 Teachers/peer educator/colleagues---11 Health camp-------------------------------12 Health workers----------------------------13 DOTS providers----------------------------14 Local leaders/religious leader----------15 Sarpanch/Panchayat Member-----------16 None of these------------------------------17 Other (specify) ---------------------------99 Symptoms of Tuberculosis 1 Prevention from Tuberculosis 2 Cure for Tuberculosis 3 DOTS 4 Place of Treatment 5 Information on prevailing myths about TB patients 6 Others (Specify)---------------------------99

193

If coded 1, then skip to 41


If the response is ‘no’ or ‘don’t know’ then skip to Q.45


Q. No.

Questions

Response

46

Did anyone visit your house/ neighbourhood during last two years to make your family/community aware and provide information on TB

Yes No DK/CS

47

If yes, who visited? (Multiple Response Possible)

Government Doctor 1 Private Doctor 2 AWW 3 ASHA 4 Health worker 5 Worker from an NGO 6 Don’t remember 7 Any other-----------------------------------99

48


49


50

According to you what are the two most important issues regarding tuberculosis which need utmost attention? (Record verbatim)

51

Skip 1 2 3

Symptoms of Tuberculosis 1 Prevention from Tuberculosis 2 Cure for Tuberculosis 3 DOTS 4 Place of Treatment 5 Information on prevailing myths about TB patients 6 Any other (Specify) ----------------------99 TV 1 Radio 2 Cinema 3 Newspaper/Magazines 4 Hoarding/Posters/billboards/Wall writing/Brochure/other printed material 5 Internet 6 Public service announcements 7 Drama/Skits/Street plays 8 Hospital/doctor 9 Friends & Relatives-----------------------10 Teachers/peer educator/colleagues---11 Health camp-------------------------------12 Health workers----------------------------13 DOTS providers----------------------------14 Local leaders/religious leader----------15 Sarpanch/Panchayat Member----------16 None of these------------------------------17 Other (specify)----------------------------99 1-------------------------------------------2-------------------------------------------

Do you have any suggestions how you/your organisation could be more helpful in addressing Tuberculosis related issues? (Record verbatim)

194

If coded 2 & 3 skip to 49

Annexure 7 NGO/CBO

Q. No.

Questions

Response

Skip

Only for NGO/CBO 52

Name of NGO you are working for?

53

For how long this NGO is working?

No. of years:

54

What are the issues taken up by your NGO?

TB specific/DOTS programme 1 Rural Development 2 Sanitation 3 Education 4 Other Health & Disease Related issues 5 Income generation 6 Gender issue 7 Domestic violence 8 Any other (specify) ----------------------99


55(a)

Does your organisation work for tuberculosis control?

Yes No

55(b)

If Yes, what are different types of activities being addressed by your NGO (Those who are working in the field of TB)?

Spreading awareness about TB, educating communities on its prevention & treatment 1 Provide community based care to TB patients 2 Training to TB care health workers & volunteer 3 Help in reducing stigma & discrimination from the community on TB 4 Help resettlement of TB patients 5 Motivating TB patients to treat under DOTS programme 6 Spreading awareness about DOTS 7 As a DOTS provider 8 Other (specify) ---------------------------99


1 2

If the response is no, then skip to Q.56

56

If not addressing TB related issues, are you interested to work in the TB control area?

Yes No DK/CS

1 2 3

57

Are you aware of any schemes under which NGOs can collaborate with RNTCP?

Yes No DK/CS

1 2 3


58

If yes, are you also involved in any of the schemes?

Yes No DK/CS

1 2 3

If no, then skip to Q.61

59

If yes, what kind of schemes?

ACSM (Advocacy, Communication & Social Mobilisation 1 SC Scheme (Sputum Collection Centre 2 DMC (Designated Microscopy Centres 3 LT Scheme 4 CS Scheme 5 Adherence Scheme 6

60

If involved in ACSM Scheme, specify the activities. (Record Verbatim)

61

Do you want to collaborate with RNTCP to work in the field of Tuberculosis?

Yes No

195

1 2

If coded ‘1’, Do not ask Q.62


Q. No.

Questions

Response

62

If no, what are the reasons? (Multiple Response Possible)

Insufficient grant under the schemes 1 People are not suffering from TB in this area 2 Do not have interest in working for People suffering from TB 3 Other (Specify)----------------------------99

63


Married Unmarried Divorced Widowed Separated

1 2 3 4 5

64


One Two Three More than three No children

1 2 3 4 5

65


One Two Three Four More than four

1 2 3 4 5

66


Single Joint Extended

1 2 3

67a


67b

What is your mother tongue? (record verbatim)

68

What is your caste?

Not willing to share 1 Scheduled caste 2 Scheduled tribe 3 General 4 Other Backward Class 5 Other Caste (Specify) ------------------99

69


Buddhism 1 Christianity 2 Hinduism Islam 4 Jainism 5 Sikhism 6 Atheism 7 Others (specify)----------.----------------99


196

Skip


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