Funded by Delhi Tapedic Unmulan Samiti

Introduction

Approximately 2 million people die of tuberculosis every year [₁]. India accounts for nearly one third of the global burden of tuberculosis [₂].Each year in India, almost 2.2 million persons develop tuberculosis out of which about 1 million are new smear positive highly infectious cases and about half a million people die of tuberculosis [₂]. TB programmes all over the world are based on the DOTS strategy which is called as the Revised National TB Control Programme in India. Its objectives are to achieve 85% treatment success and 70% case detection [₃]. At present, RNTCP covers 90 % of India's population [₄]. The entire city of Delhi was brought under RNTCP in 1999, and even though the treatment success rate in the year 2000 was 80 % and case detection rate was 68 %, the annualized total case detection rate still remained high at 203 smear positive cases per 1,00,000 population [₅].

In a study on causes of mortality, which had been conducted in an urban population in Northern India, it was observed that tuberculosis accounted for 5.3 % of all the deaths[₆].Various factors such as delay in seeking treatment, ignorance towards the modes of spread of the disease and treatment default could contribute to the currently high case load of tuberculosis in Delhi [₇,₈].

The TB control programmes have recognized and addressed those system components in which knowledge and behavior of not only the patient, but also the general population are the key issues which have a profound influence on the treatment seeking behavior and completion of treatment [₉,₁₀]. Under the RNTCP, case detection of tuberculosis mainly relies on the passive reporting of symptoms which to a large extent is dependent on voluntary presentation and motivation of an individual for recognizing the symptoms as well as cultural and social factors [₃].It has been well documented that poor health education and awareness about tuberculosis of the patients and health care providers are one of the fundamental problems which adversely effect the current strategy of tuberculosis control [₁₁].Lack of adequate information plays a key role as one of the major barriers to treatment compliance [₁₂,₁₃]. In those settings where high cure rates had already been achieved, community health education was observed to be highly relevant [₁₄].

One of the major initiatives of the TB control programme aimed at behavioral change is the launching of an intensive IEC (information, education and communication) campaign. IEC activities help to speed up the process of change, to reinforce knowledge, and to ensure a continuous educational system for the community [₁₅]. Although the IEC strategy has been an integral component of the RNTCP in Delhi, the ongoing IEC efforts were further intensified in the form of a campaign launched in March 2001.Prior to this, the IEC component of the RNTCP was not given much priority. The WHO had also declared that Tuberculosis is a global emergency, and to make programs more effective, intensification of IEC programs needs be done. In the routine IEC , efforts were too little and scattered in quantum whilst in the intensified campaign, synchronized multiple methods had been used. Following intensification, the campaign has been sustained with modifications having been done according to the evaluation findings of this study which was conducted after a period of 2 years. As the intensified IEC Campaign was supported by the World Bank, the evaluation strategy was a benchmark requirement of the World Bank . Therefore, the objectives of this study were as follows : (i) To evaluate the impact of an IEC campaign on awareness generation about tuberculosis among the general population and tuberculosis patients belonging to different socio-economic and cultural backgrounds(ii) To elicit their opinion and suggestions for making the IEC campaign more effective and suited to their needs (iii) To study the perceptions of health personnel with regard to the intensified IEC Campaign and to seek their opinion for improvement. The findings would provide valuable feedback information on the earliest version of the IEC Campaign to the programme managers, stake holders and funding agencies. Few other studies have been done to evaluate the impact of IEC activities in different areas of health [ ₁₆ ].

A qualitative approach was used for the process evaluation as it enables a researcher to “see” a lot more and also broadens the field of vision, and serves to give the study participant a “voice”, both literally as well as metaphorically which would make them feel valued [₁₇]. The information that would be so gathered reflects on the perceptions, beliefs and values of a group and is therefore particularly well suited to addressing cultural characteristics that influence a population's health status [₁₈].

Material and Methods

Study Area: Delhi is the capital city, located in the Northern part of India with 95 per cent of the population in urban areas and 5 per cent in rural areas . The current population of Delhi is 16 million [₁₉].(Please See Box 1)

The city is divided into 6 broad divisions for RNTCP services viz; North, South, East, West, Central and Old Delhi. At the divisional level, the District Tuberculosis Officer is the overall in charge of the tuberculosis control activities. At the sub-divisional level, the city is divided into wards, and each ward has a Chest Clinic. At the peripheral level, the basic unit is the DOTS (Directly Observed Treatment Short-course) cum microscopy centre which serves a population of 0.1 million.

The IEC Campaign which was conducted included various strategic activities such as:

Display of message on buses, bus stops, kiosks, hoardings, banners, wall paintings.

Use of mass media through Television, radio, newspaper advertisements.

Use of Interpersonal communication through community and public meetings as well as local health fairs.

The boards and hoardings were displayed on busy traffic intersections and outside important government buildings throughout the city. Messages on mass media were aired on all the popular channels of television and radio. This helped to ensure a widespread coverage of all the segments of population.

These messages focused on the following themes :

1.Seek medical advice if one has cough for more than 3 weeks. Contact your nearest Chest Clinic.

2.Three Sputum tests are done to rule out tuberculosis.

3.Treatment for tuberculosis is free at all Government health centres .

4.Adhere to treatment otherwise tuberculosis becomes incurable.

Study Design and Methodology

Sampling Technique and Sample Size

Results

Socio-demographic Profile of the study participants:

Patients: This has been described Table I

General Population: Please refer to Table II

(iii) Tuberculosis health workers: Kindly refer to Table III

A. Focus group discussion with the patients: (Table IV)

Source of information about symptoms and Source of first contact care:

Majority (76%) of the patients from slum areas and 86 % from resettlement colonies, had come to the chest clinic/DOTS center as the first line of treatment because they had been told about the clinic by some neighbor or friends of theirs. Almost all the patients from the regular colonies had gone to the nearby general hospital or a private practitioner for obtaining first line of treatment and had been thereafter referred to the chest clinics henceforth. Fewer than 50 % of the patients belonging to the slum areas, re-settlement colonies, regular and rural colonies had ever observed messages displayed on boards and hoardings. As far as awareness about the disease from IEC was concerned, about 35 % from slum areas, 48 % from resettlement colonies did claim to have read the boards and hoardings regarding the symptoms of the disease and diagnosis and seeking treatment for the same. The majority (83 %) of patients residing in the walled city had read hoardings and messages on the boards and could recall most of the messages.

(ii)Myths and stigma associated with tuberculosis:

Certain superstitions regarding the treatment of tuberculosis (such as eating of tortoise meat) were cited by 35 % of the patients belonging to the slum areas. As many as 47 % of slum area patients believed that the best treatment was available in the city of “Vrindavan”( a pilgrimage city situated in North India). In all the areas, the patients felt that the disease was no longer considered such a big stigma. Fewer than 50 % of patients belonging to slum areas, regular colonies, rural areas and walled city while 62 % from re-settlement colonies were unsure of the reaction they would be evoked from society in case their health status was to be revealed.

(iii) Patients' suggestions about making IEC activities more effective:

The Majority of the patients from all the localities felt that television would be an effective IEC medium. More than 65 % of the participants from slum areas, re-settlement colonies and walled city were in favor of attractive and colorful hoardings. Door -to -door campaign was perceived as an effective IEC medium by 59 % of slum dwellers, 71% belonging to re-settlement colonies, 56 % of walled city patients and 13 % in the rural areas.

B. Focus group discussion with the general population:

(i)Source of information about tuberculosis:

While none of the participants belonging to the slum areas and re-settlement colonies claimed to have ever viewed an IEC message, majority 70 % of regular colony residents and 57 % of walled city participants said to have observed IEC messages on the boards and hoardings. In the rural areas, all except one woman were generally ignorant of any IEC method. She was the only one to have seen a hoarding and could say that for a cough of 3 weeks duration, one must approach the nearest health centre.

(ii) Perceptions about tuberculosis :

As many as 74 % of the slum area dwellers knew about TB as being highly contagious and it seemed that though they knew it to be a curable disease, they did not however, believe too strongly in it. “TB se sab mar jate hain”(Every one suffering from TB dies) was the general feeling conveyed by 86 % of them. In the re-settlement colonies, the women had never read nor heard any information regarding TB. Their ‘Box of wisdom' was full of superstitions, wherein 52 % placed mental tension as one of the causes of TB. They knew the disease to be highly infectious. About 63 % felt that a lot of “Parhej” (superstitious precautions) had to be observed if the disease had to be controlled. As far as the population living in the villages were concerned, about 88 % of them felt that TB was still a stigma.

(iii) Opinions on IEC messages about TB treatment and treatment facilities

Majority (93 %) of the women and men residing in the slum areas claimed “they say there is free treatment, but we have to purchase the medicines from outside. It's all a lie. They treat us like cattle at the government hospital”. They felt that even though they had access to government hospitals they preferred not to go there. They said, “poverty does not mean we are animals”. About 84 % of the participants in rural areas were unaware about the availability of free treatment and they complained about lack of medical facilities. Also they relied much on the clinical services of a Non Governmental Organization at their village. Around 30 % of the men said that they were currently undergoing prolonged treatment for some unknown diseases. They did not know what they were being treated for; all they felt was that they were not getting cured. Symptoms like that of cough & fever would go on for months at an end and no investigations were done for the same.

(iv) Suggestions with regard to making the IEC activities more effective:

Television was ranked as the most effective IEC medium in all the areas. About 69 % of the people in the slum areas and 73 % in the walled city felt that local newspapers in Hindi would be an effective medium for spreading information. The main reason cited regarding this suggestion was that these local papers were read by groups of laborers etc. in tea and barbershops. Door-to-door campaign was suggested as a favorable strategy by 81 % in re-settlement colonies and 76 % in slum areas. About 48 % in the slum areas felt that big banners would have an impact since they tend to easily catch attention whilst 44 % of the people belonging to the villages and 70 % in the walled city felt that huge paintings on the walls, especially public toilet walls, could also help to arouse curiosity and awareness about the disease. As many as 46 % in the walled city felt that movie actors and popular soap operas could play an important role in spreading messages about tuberculosis on television. In walled city area , 53 % felt that an effective way of spreading a message would be ‘Munadi' (announcement by Mikes Carried in Autos) and announcements through the mosque.

C.Key informant interview:

(i)A patient named Rohtas*, belonging to a re-settlement area was taken as a key informant as he was seen as a representative of the group of the disgruntled patients in whom the disease had relapsed. He had come to the clinic by reading about the symptoms of the disease on a hoarding. He had earlier undergone treatment for TB and was a defaulter as per records. He had told his family that he was suffering from a disease of ‘Chhoot' (untouchability) so that they would stay away from him and this would prevent the spread of disease. He felt that more effective than hoardings, which was way above the reading level would be the wall paintings. Hindi newspapers should also be used to spread information about the disease and its treatment.

(ii) Another key informant was the doctor in-charge of “Rehmani” (a Non-governmental organization) in the walled city area. Based on his personal experience of other diseases and use of IEC for TB, he felt that the IEC methods needed to be area specific. He felt that for the walled city residents, ‘Munadi'(announcement by mikes carried in autos) was the best way. The utility of ‘Nukkad Natak' (street play) and satellite television for IEC came as a close second. He also felt that the involvement of local private practitioners (who share a good rapport with their patients) would be an effective way to reach out to more people. He felt that since most people were cinema addicts, slides in cinemas would be more effective than hoardings.

(iii) A randomly selected local medical practitioner in a slum area said that if patients suffering from prolonged fever consulted him, he generally referred them to the nearest Chest Clinic. On further probing, he revealed that he initially gave them antibiotics and then referred them to a chest clinic. He felt that the best way to spread information was through handbills, banners and also through the television.

(iv) Another Key Informant was Krishna*, an Anganwadi worker in the resettlement area. She suggested that help of village “Pradhan” (Head) should be taken to explain the disease to the women in the community. She also felt that free treatment should be emphasized and that various campaigns such as the polio immunization campaign should also be used to spread information on TB as well, since this was an occasion when no house was left; thus ensuring full coverage that might not have been possible otherwise.

*Names have been changed to maintain confidentiality.

D. In-depth Interviews (DOT providers)

The third group, consisting of DOT providers (only Tuberculosis Health Workers) were interviewed separately in all these localities. The majority of DOTS providers felt that having IEC material in the clinics in the form of pamphlets, handbills and handouts would be very useful .This is mainly because when patients came, they were in such a disturbed state of mind that they hardly registered what was being told to them. If these patients had IEC material, they could always refer to them when they were feeling better.

The minority group of DOTS providers were of the view that IEC material was many a times it was disposed off the moment the patients left the clinic. These DOT providers felt that those patients who wanted to benefit from the motivational talks imparted by them benefited any way while those who didn't want to be benefited, failed to do so, despite the use of any method of IEC.

The DOT providers opined that the IEC material with pictures was more effective as people remembered pictures better than text. Also many DOT providers felt that it was very essential to go into the communities and host talks, plays and songs to spread information.

Discussion, Conclusion and Recommendations

As far as awareness about the disease symptoms among the patient groups was concerned, it was mainly the patients belonging to the walled city who had read the messages on the boards and hoardings and they felt it to be a fairly effective method of imparting information. In the slum areas, re-settlement and regular colonies ,we observed that most of the patients had either sought help from a chest clinic or a government hospital, on the first perception of the symptom of having a prolonged cough , while some of the them had been referred to these health centers by a private practitioner. However, we observed that it was interpersonal communication , either amongst the people, or between the patient and source of first contact care which played an important role in motivating the patients to seek help from a government health facility. These findings are in contrast to previous studies as reported by Uplekar, M. and Rangan, S. (1993) and Wolski, K., Martinez, F. and Jaramillo, E.(1995) who observed that most of the patients with respiratory symptoms preferred to seek help at the private clinics as the first line of treatment [₂₀, ₂₁]. These findings calls for further research pertaining to adopting interpersonal communication as a tool to spread awareness with regard to treatment seeking behavior. The Community Tuberculosis Care in Africa Project involves a suitable community organization in spreading awareness and caring for patients with TB and their families.[₂₂].

With regard to tuberculosis being a stigma, while all the patients felt that the disease was no longer considered such a big stigma, upon further probing they admitted that they were unsure of society's attitude towards them once their disease was revealed. A similar view was held by a group of TB patients in Sialkot , Pakistan [₂₃].The stigmatization of TB patients has also been observed in a study conducted in South India wherein as many as 38 % of the TB patients admitted that they would like to avoid meeting their friends whilst 43 % of them felt inhibited to reveal the diagnosis to their friends [₂₄]. Whilst the stigma of TB as “a disease of the poor” still persists, more recently, HIV/AIDS stigma affects TB patients, particularly in communities where HIV/AIDS is prevalent as shown in studies in Ethiopia, Pakistan, and Thailand [₂₅, ₂₆,₂₇]. TB patients thus suffer from double stigma.

Certain myths and superstitions about the treatment of TB such as consuming tortoise meat to cure the disease were also observed. Malhotra R. et al (2000) reported similar superstitions existing among the rural folk of Delhi [₈]. Therefore it is suggested that IEC messages focus upon removing such myths and superstitions and in bringing about a paradigm shift in society's attitude towards tuberculosis.

We observed that majority of the patients in all the areas were in favor of television being a source of IEC. Door-to-door campaigns were favored by those residing in slum and rural areas, re-settlement colonies and walled city. These findings are supported by a quantitative study conducted by the same institution in Delhi amongst a population of 1012 patients [₁₀].

With regard to FGDs with the general population, we found that none of the participants in the slum areas and re-settlement colonies and all except one in rural areas had ever observed an IEC message on TB. A number of misperceptions and misconceptions with regard to the gravity of TB were observed in the slum areas and re-settlement colonies. Therefore, there is a need to intensify IEC activities in these sub groups of population and also to emphasis upon tuberculosis as being a curable disease.

The perceptions of the general population belonging to the slum areas with regard to the treatment facilities available at the public health centers were rather negative. These findings reflect the response of the people to the IEC messages on availability of free treatment at the Government health centers. This is in concordance with the observations noted in a series of FDGs conducted amongst general population in rural Orissa [₂₈].A similar finding was noted by Johannson, E., Long, N.H., Diwan, V.K and Wenkvist, A.(2000) in their study regarding perspectives on health seeking behavior in the general population in Vietnam wherein the staff attitudes and quality of health service facilities were described as not always corresponding to peoples' expectation of an appropriate health service [₂₉].The people belonging to the villages usually went to an NGO run clinic in the area and were not satisfied with the treatment that was provided. In order to improve the involvement of the NGOs' and private practitioners, and help them provide better services, steps are already being undertaken in the RNTCP [₃₀].

Among the general population as well patients, television was vouched for as the most effective medium of IEC. The different sub-populations cited different media which they perceived as suitable to their needs. In the city of Mumbai, a pilot attempt by Rangan, S. et al (2003), which included adoption of area specific IEC strategies has shown a favorable impact on programme indicators [₃₁].

From the in-depth interviews, we found that the majority of DOTS providers felt that having IEC material in the clinics in the form of pamphlets, handbills and handouts would be very beneficial. In India, the default rate continues to be high and an irregular intake of anti-tubercular drugs and non –completion of treatment is leading to an increased emergence of multi-drug resistant tuberculosis. At present, the prevalence of multi-drug resistant tuberculosis ranges from 1% to 3% in India [₃₂]. Jaiswal, A., Singh, V., Ogden, J.A. et al (2003) in their study conducted in an urban part of Delhi regarding the adherence to tuberculosis treatment showed that 7 % and 10 % of the patients taking treatment from two different chest clinics left the treatment even before it was completed [₇]. It has been argued that the reasons for default stem from a poor correlation between the needs of the patient and the other priorities of the RNTCP. The DOTS providers also felt that the IEC material should contain more of pictorial messages rather than script. Their perceptions agree with the findings of a study which had been conducted by Pichu, L. (2004) among some patients in the Indian state of Bihar showed that distribution of health education booklet with pictures did lead to a significant improvement in knowledge [₃₃]. Moreover, in India, due to religious practices such as fasts, when people do not take food on certain days, it is relevant to convince patients to take their drugs as per schedule even under such circumstances [₃₄].

In the key informant interview and in-depth interviews, the health service providers opined that television and local communication using a camp approach would be beneficial in spreading awareness. These findings are in agreement with the opinions of the health personnel as was found in a multi-district study in Delhi wherein television, hosting of awareness camps and use of leaflets, posters, booklets and pamphlets were considered to be effective channels for IEC [₃₅]. This study therefore highlights the continuation of intensive IEC using area specific methods and gaining the people's confidence with regard to seeking treatment at the Government health centers and to further the incorporation of messages with regard to removal of myths and stigma that are associated with tuberculosis.

Figure 1

Box 1

Figure 2

Table 1 : Socio demographic profile of the patients

Figure 3

Table 2: Socio demographic profile of the general population

Figure 4

Table 3: Socio demographic profile of the tuberculosis health workers

Table 4: Results of the Focus Group Discussions

Figure 5

Table 4a: Patients

Figure 6

Table 4b: General Population

Acknowledgments