Volunteer projects

Creating a Sustainable and Flexible Community Support Model for Increasing Tuberculosis Drug Adherence

Submitted by krahman on Sun, 01/25/2009 - 12:40.
Last updated on Tue, 06/02/2009 - 00:19.

Vital Stats

 project idea
 05/25/2009
 01/25/2009
People Impacted:  300
People Involved:  8
Money Raised: $4,000

Project Video

The Problem

The World Health Organization (WHO) estimates that over 14 million people in the world are living with TB today. Despite the availability of inexpensive antibiotics, every year approximately 9 million people develop active TB and the disease kills 1.7 million people a year. A major driver of the epidemic is low drug adherence due to forgetfulness, lack of trust, side effects of the TB drugs, alleviation of symptoms before the end of the treatment regimen, inconvenience in obtaining treatment, and lack of patient support. The directly observed treatment, short-course (DOTS) method promoted by the WHO provides a relatively effective method of treating infected TB patients. The DOTS strategy promotes drug regimen oversight by healthcare workers and peer workers who ensure compliance by directly administering the drug to patients. Since 1995, over 20 million patients have been treated under DOTS worldwide. The DOTS program has been effective in many regions and has been recently expanded to cover all districts of India. However, there are many problems with the program. Under the program, health workers are asked only to administer the treatment and do not provide TB education or support the patient. The program is not patient driven which can often lead to alienation of the patient during critical periods during the treatment regimen. It is also a very expensive program to organize and maintain. In addition, studies suggest that as many as 25% of patients in India do not enter the program due to fear of being found out and being forced to face the stigma associated with TB. Our project aims to increase TB drug adherence in India by working with community leaders to create a community support model to decrease stigma surrounding TB.

Why It's Important

Our group, Tackling Tuberculosis (TTB), consists of MIT undergraduates and graduates who are motivated to change the status quo regarding TB drug adherence statistics. Currently, in India, 25% of TB patients do not take the drugs needed to cure them of TB because of social stigma surrounding the disease. They believe that once their communities find out about their diagnosis, they will be ostracized and isolated by their community. This is a large problem especially with the poorer classes because they are afraid that they will lose their jobs, livelihood, and marriageable status. We believe that community support groups can help TB patients deal with the social stigma as well as educate them about TB. Our goal is to test the effect of the Community Support Model on TB drug adherence in a multi-religious, multi-cultural society of India. We want to test if the model has a significant impact on the internalized stigma levels of TB patients that may be causing them to hide their disease, stop their treatment when the symptoms disappear, and not seek treatment or diagnosis for TB. Our overall objective is to increase TB drug adherence using the community support model that will address the barriers to adherence patients face as listed above. Our specific objectives are: 1. Measuring adherence rates resulting from attendance rates of TB patients in the support group. Our hypothesis is that the education and support provided in the community support groups will increase the awareness of the importance of drug adherence and help patients deal with the negative impacts of the disease. Thus the patients that consistently attend the meetings will have a higher adherence rate. 2. Assessing the effect of stigma on adherence rates. TB stigma causes patients to hide their disease, stop the treatment regimen, and refuse help with dealing with the physiological and psychological impacts of the disease. This can affect adherence rates and we would like to quantify the resulting impact of stigma on adherence rates. 3. Assessing the effects of the community support model on the internalized stigma levels of TB patients. Community support groups provide a place for patients to discuss their feelings and the problems they face. The peer support should help patients understand that they are not alone in dealing with the disease and that there are people willing to help them though the treatment course. This should decrease internalized stigma levels in the patients. 4. Supporting group leaders to become social innovators. We will train group leaders on basic leadership skills and the general social support skills needed to run the groups. The group leaders themselves will run the group based on their knowledge of the community and will create innovative solutions to deal with the problems faced by their patients. We will create a network among the group leaders so that they may discuss the issues they have faced during the treatment course and create solutions to the problems as a team. 5. Address the issue of compatibility in a multi-religious, multi-cultural society that exists in India. We will first address the issue in Bihar, India which is a high density populated area that has many regions with unique sets of traditions and customs among different regions. If we see that the community support model significantly increases TB drug adherence in Bihar, India, we will expand the program to other regions in India.

The Plan Of Action

The steps we will take to create our project is as follows: 1. Find a community partner: We have found a community partner in India named the Prajnopaya Foundation which runs TB testing camps in Bihar, India. They will be our ground organization in India that will run the groups. 2. Create Training Materials for the group leaders: We are currently creating training materials that include information about TB, the drug treatment regimen, information about changes in infectious states, and activities to address the patients social stigma. 3. Travel to India to start the program: during this trip, our group will oversee the training of the group leaders, visit the diagnostic camps, and choose the patients that will participate in the community support group. 4. The community support groups will run for 8 months for the original project. We will get information from the Prajnopaya Foundation about the groups, attendance statistics, and drug adherence statistics. 5. We will analyze the data and based on the results, improve our community support model.

How Can Others Get Involved?

 
Other students can help by refining the training materials,increasing awareness about TB and drug resistant strains of TB on campus at MIT, and help organize events such as guest speakers and movie nights to increase awareness about issues in global poverty.

Project Updates

06/1/09
Update: We have creating a new brochure which is attached in this update. This brochure will be used as fundraising material and for general information to be distributed among the MIT public. The Do Something grant award will be used to print these brochures in the upcoming semester.


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Great initiative! You are increasing opportunity for these people to be self-sufficient