Civil society participation vital for public health programming

Rahul Dwivedi, CNS Special Correspondent
KS Roy Hospital (CNS photo)
“We have always known that alongside scaling up diagnostic and treatment services, engaging communities is vital for the success of disease control efforts. This is especially the case for tuberculosis (TB) – an ancient disease surrounded by stigma, discrimination, and misconceptions. The Knowledge-Attitude-Practice (KAP) survey results underline the payoffs of civil society participation in public health programming” said Dr Sarabjit Chadha, Project Director of ‘Axshya’ at the International Union Against Tuberculosis and Lung Disease (The Union). The KAP midline survey results were released on 27th March 2014 in New Delhi.

This KAP survey aims to measure changes in knowledge, attitude and practice as an outcome of specific interventions on TB care and control being carried out by project ‘Axshya’. Project ‘Axshya’ was initiated in April 2010 under the Global Fund to Fight AIDS, Tuberculosis and Malaria (The Global Fund) grant (round 9), and is being implemented in 300 districts across 21 states of India. The focus is mainly on advocacy, communication and social mobilization to support India's response to TB. ‘Axshya’ is being implemented through eight sub-recipient partners, informed Dr Chadha.

The thrust on community engagement is not new, but the evidence to show that community engagement works and positively impacts a public health programme, is certainly another major step forward as it adds to the existing body of evidence calling for community-centric approaches in health programming. Working with community to improve TB care and control in India is important and at times "it is not very easy to show impact. But I am glad that this evidence has come," said Prabodh Bhambal, Interim Deputy Executive Director of The Union.

Anshu Prakash, Joint Secretary with the Ministry of Health and Family Welfare, Government of India said that this KAP survey which began in 2011, tells us the direction where we are going so that whatever mid-course correction is required could be made for maximal public health impact. “But survey also has very interesting findings. I was surprised to find that the number of households who use wood as a fuel [for cooking] is so high.” Using wood for cooking adds to indoor air pollution and increases risk manifold of a range of lung illnesses (especially for the children). The number of households using wood as a fuel for cooking and possessing a mobile phone was also significant. Central TB Division is going to gain from these midline survey results as it provides important and useful data, said Prakash.

Dr Karuna Sagili, Research Associate, The Union, informed us that: “KAP surveys have been identifying the knowledge gaps, cultural beliefs and behavioural patterns that may facilitate or create a barrier for a proposed public health initiative. So we did the KAP baseline survey in 2011 at the beginning of project ‘Axsyha’, followed it up with a midline survey in 2012 and then in 2015 an endline survey will be conducted to measure the impact [of specific interventions carried out under project ‘Axshya’].”

Survey respondents included 4804 people from the general population, 496 TB patients, 523 healthcare service providers, 611 opinion leaders and 93 representatives of non-governmental organizations (NGOs) or community based organizations (CBOs), said Dr Karuna Sagili.

88% of all the respondents from general population 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. 83% of the respondents had knowledge that TB is curable. 48% knew that correct duration of the treatment is 6-8 months. Only 23% have heard about DOTS.

Basic knowledge about TB was defined with 4 indicators: 1) having heard of TB; 2) knowing that a cough of over 2 weeks is a symptom; 3) Knowing that TB is curable; 4) having heard of DOTS. 32% of the general population had the basic knowledge about TB as described above in midline survey whereas only 18% knew about TB in baseline survey done in 2011.

50% believed that smokers and people with long-term cough are more prone to TB. Only 10% believed that malnourished children and women, and people living with HIV (PLHIV) are prone to TB. 60% did not know about the standard treatment for TB and 10% believed in alternate medical therapies for TB treatment. Only 31% believed that they also can get TB. Key source of TB related information was television (TV) with 80% respondents having access to both TV and mobile.

There was an array of very interesting findings in the KAP study that should inform India’s TB programme in days to come. 23% respondents said that married female TB patients should be send to her parents’ house for TB management. 48% respondents said that a TB patient is a public health threat to the community. 28% respondents said that TB patient must be managed in isolation. 15% respondents were willing to share their meals with a person with TB. Only 10% respondents were willing to marry their son or daughter to a person with TB.

71% of respondents who were TB patients had heard of free diagnosis and treatment of TB. 58% had received their diagnosis in a government healthcare facility. 81% of respondents among TB patients had visited one or two healthcare providers before they got diagnosed with TB. 81% of these TB patient-respondents were diagnosed within one month of onset of the symptoms in this midline survey (74% were diagnosed within one month of onset of symptoms in baseline survey on 2011). It is important to note that 41% were initiated on treatment within 7 days of diagnosis. 73% of TB patients were aware that the treatment has to be taken regularly and that the duration of treatment is 6 to 8 months. Only half (51%) of TB patients were aware of free TB treatment provided under DOTS.

There were some trends that need more attention to details so that they can be addressed in time. For example, in the baseline survey of 2011 69% TB patient-respondents were initiated on standard treatment within the 7 days of their confirmed diagnosis however in midline survey this figure sank to 47%. Benefits of early accurate diagnosis needs to be matched with early provision of standard treatment and eventual cure.

2% of TB patient-respondents were receiving antiretroviral therapy (ART) for being co-infected with HIV and 10% were also receiving diabetes care. 30% of TB patient-respondents were living in one room houses. 64% were living with their family members. Of those TB patient-respondents who were living in one room houses, 70% of them were using wood as a cooking fuel (which is a strong risk factor for a range of lung illnesses). More than half of TB patients were living on monthly income of INR 4000 or less.

Lethal synergy between tobacco use and tuberculosis is well known. On World TB Day 2014 The Union was part of the most-robust evidence ever that tobacco smoking doubles the risk of recurrent TB. Not surprisingly, 35% of TB-patient respondents were using tobacco in smoking or smokeless form, and 49% of these respondents, had been using tobacco for over 10 years. Only 38% of these respondents knew about the deadly association of TB and tobacco and 73% of them were already counselled by their treating doctors to quit tobacco use.

TB-related stigma and discrimination has been addressed considerably with rising consciousness and understanding. 99% of TB patient-respondents had received support from their family. 17% of TB patient-respondents had shared their disease status with their employer of which 6% had to change their jobs (in baseline survey, more respondents who had disclosed their TB to employers had to change jobs).

The survey respondents also included opinion leaders such as Panchayat Raj members, Village Sarpanch, teachers, Aanganwadi workers, and other community influencers in that particular village. 94% of these opinion leaders had heard of TB. 75% of them knew that TB is transmitted through the air. 88% of opinion leaders were aware of two key TB symptoms: a cough of 2 weeks and coughing up of blood. 91% of them believed that TB is curable. 58% had heard of DOTS.

Dr Karuna Sagili of The Union said that “while we believe that the survey 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.”

Rahul Kumar Dwivedi, Citizen News Service – CNS 
March 2014 

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