Back in Town

Hey,
So I know it's been a while, but the last few weeks have been kind of busy and they went by really fast. As of now, I'm back in town and I have in my luggage all 100 interviews with the answers translated into English...so YAY!!! success. Now comes the hard part. I said before that I needed to analyze the responses using a software program. I was planning on using AnSWR, a CDC program that can be downloaded for free; however, I couldn't get it to work on my computer (probably because there's not enough space for it), so I'm going to try it again on my desktop. If this doesn't work, I'll have to find another program.
On another note, I definitely felt like the time I was there was way too short because it went by so quickly and because I felt like it wasn't enough time to do everything I wanted to do (not only in terms of working on my project, but also in terms of relationships). I felt like all of the relationships I had with my mentors, the people I lived with, the aunties that took care of me, all of the fieldworkers that completed the interviews etc. were very short-lived and it was kind of unfair because it seemed like I was being very selfish with my time. I mean I know right now it feels like this because they haven't gotten anything back in return, but maybe in the end, when I've analyzed all of the data and come up with a report that will help design the most effective awareness program, they'll know that all of their work went to something that will change the perceptions on HIV/AIDS in relation to pregnancy of the women living in the slums.

a few bumps in the road

The interviews should be finished by the end of Wednesday, July 2nd. I've gotten about 50 back so far, but the answers for about 30 of the interviews still need to be translated into English. One of the most important questions on the interview, "if you knew that an HIV+ woman wanted to have a child, what would you say to them and why" was mis-translated, so some of the SureStart team members didn't ask their clients this question since it implied that the client had to know an HIV+ woman in order to answer this question. So the SureStart field workers are going back into the field today to ask that question again. There's another more pressing issue at hand...and that is I'm having trouble finding and downloading (internet connection is not so great here) that can analyze my free response answers (i.e. text-based). Obviously, qualitative data is hard to quantify, but at least I can maybe code the answers and that way the software program can output statistical results. Because of my time table, it looks like i'll be bringing back all of the translated interviews back with me (so I will need to make space in my suitcase), analyze them with a software program in order to determine what needs to be addressed in the awareness program!

Lost in translation....and some other stuff

Just to give you an update, all of the interviews have been translated, edited and copied and the interviews started today!!!!! It turns out we have about 5 facilitators from the DISHA team (conducting the HIV+ interviews) and 5 from the SureStart team (conducting the HIV-/unknown status interviews); therefore, it will take about 10 days. I plan to get 10 interviews back each day and translate the Marathi answers into English. Unfortunately, all of this means that all of the interviews will not be finished until Wednesday, July 2nd and I leave on July 7th. Today I had 2 separate meetings w/ the DISHA and SureStart community health workers to address all of their questions, problems, concerns etc. There was only one mis-translation/ miscommunication problem about one of the questions with the DISHA team. There were a few complaints with the SureStart team about how long the interviews took (about 2 hours) because the women who were responding to the questions have a lot of work in the morning and can’t give up that much time. So, they’ve decided to start interviewing in the afternoon. A lot of the SureStart members were worried about what they should write down if the respondent doesn’t know what HIV/AIDS is, and they were worried about some of the responses concerning myths about HIV transmission etc. But I told them that’s exactly what I wanted to hear. I want to know what the respondents already know, what they think they know, what they don’t know and what they want to know, because that’s the only way an effective awareness program can be created. Sure, it's frustrtating to create these interviews, know them inside and out, and then worry that they aren't being conducted correctly to get the information we want to collect. But, I don't have a choice...and that's something that I'll just have to learn to deal with.
As mentioned before in the objectives for this project, we plan to create an awareness program, so I have a bit of a dilemma (i.e. 2 options). One option is to carry out the project at home in America, while the other option is to pass it on to another volunteer. I would love to carry out this project from home, but the truth is that I’m not really qualified to…I have no experience; I don’t know the first thing about developing an awareness program. However, I feel that this is my project, kind of like my baby, not an obligation. I want to at least be involved in creating the program.
Once I have the answers to the interviews, I will understand what the women in the slums know about HIV/AIDS specifically in relation to MTCT and how they feel about HIV+ women reproducing. I feel that in order to reduce the stigma and discrimination surrounding this issue, we need to focus on teaching them basic facts about HIV/AIDS, and then we can proceed to teaching HIV+ women how to prevent MTCT through ways that that they can afford. Obviously, ARVs aren’t a viable option for slum dwellers, but milk substitutes may be. Also, with a program like SureStart and their hospital referral system, the families could save up money for a C-section instead of a normal vaginal birth.

Some side notes:
I’ve been doing some side projects and there have been some updates on other projects going on. In some of my past blogs I talked about the IDU site called the Pune City Action Plan that was located in Pimpri and that I’ve made ID cards, logos and letterheads for, well, they just opened up their new center closer to the city at 2pm.
Not last weekend, but the weekend before that, I attended a performance by Saheli kids. Saheli is another NGO that is a sex workers collective in Pune that takes care of kids of sex workers. Some of these kids have been pulled from the red light district, while others were put into the program. So, some of the volunteers at Deep Griha want to take them out to the park and hang out with them a few days during the week. Also, for the first week of July, a few us, especially including Bhavana, a Sahara volunteer (another NGO that takes care of HIV+ patients) who has had a lot of experience with working with sex workers and understanding their relationship with the society including the law, would like to try and get other sex worker collective NGOs together and do something for their international awareness week. So although I only have a little over 2 weeks left, I’m going to try and help out with these last two projects.

Details Details Details

So it’s been about a week, and I’ve done a lot of work since then. Here are some more details on the study:

In order to decrease the prevalence and the further spread of HIV/AIDS in Pune, it is important to educate people on how it is transmitted and therefore awareness about HIV/AIDS is a major prevention strategy to contracting this virus and disease that cannot be cured. Hence, it is essential to evaluate the current level of awareness about HIV/AIDS and its preventive measures among those of high risk groups, such as Pune slum dwellers, so that we can create an effective awareness program. Although awareness programs can be effective in reducing the spread of HIV, it can also be effective in reducing the associated stigma and discrimination since education about HIV reduces the fear surrounding HIV/AIDS.
One of the major ways that HIV is transmitted is mother to child transmission during pregnancy, labor, delivery and breastfeeding. Without any care, HIV+ women have a 15% to 30% chance of passing the virus to their infants during pregnancy, labor, or delivery. Breastfeeding (not exclusive during the first 6 months) will transmit HIV to another 10% to 20% of infants. In other words, 3 to 6 babies out of 20 births by HIV+ women, would be born infected, and another 2 to 4 would be infected if breastfed (Johns Hopkins Bloomberg School Of Public Health, 2007)
Women planning to be pregnant as well as new mothers must be informed about this type of transmission especially since ARV medications, cesarean-section delivery, and avoidance of breastfeeding can reduce MTCT risk. Again, it is important to find out how many of these women in the slums and to what extent they know about mother to child transmission in order to assess the stigma and discrimination concerning HIV+ pregnant women in the slums so that an effective awareness program can be developed.

Introduction to the DISHA/SureStart (DSS)

Background Information and goals of the project:
Awareness about HIV/AIDS transmission and prevention strategies decreases the fear surrounding HIV/AIDS and therefore decreases the associated stigma and discrimination
Many women believe that babies born to HIV+ women will be infected, or that HIV+ women are too sick to have healthy pregnancies and give birth to healthy children.
It’s been shown that HIV can be transmitted from mother to child during pregnancy, labor, delivery and breastfeeding. Without any care, HIV+ women have a 15% to 30% chance of passing the virus to their infants during pregnancy, labor, or delivery. Breastfeeding (not exclusive during the first 6 months) will transmit HIV to another 10% to 20% of infants. (Johns Hopkins Bloomberg School Of Public Health, 2007)
However, if we can educate them about mother to child transmission and ways to prevent it by having the mother and/or the child take ARV medications, getting a cesarean section delivery, and avoiding breastfeeding, the baby can be HIV- and healthy
The goal of this project is to create an effective awareness program for the women in the slums in relation to mother to child transmission (MTCT), but we first need to find out what they already know about HIV/AIDS and how they feel about issues concerning HIV+ women having children
· Objectives
o To conduct a knowledge assessment about HIV/AIDS, the preventive measures, and its related stigma and discrimination among women living in the Tadiwala Rd. slum
o To examine the level of misconceptions about modes of transmission of HIV/AIDS and its related stigma and discrimination specifically in relation to mother to child transmission among those with known and unknown HIV status
o The results of this study will be used to develop an awareness program.
Methods:
The target population
100 women from the Tadiwala Rd. slum
Preference to women who plan to become pregnant, who are currently pregnant and mothers were recently pregnant (i.e. have young children)
DISHA and SureStart community health workers will interview one woman a day for about 10 days using interview questions that have already been prepared
The interview
This interview is more of a discussion with the respondent, not a survey or a questionnaire, so the client should feel comfortable conversing with the interviewer
Every interview will begin with the “Pre-Interview” packet and will then proceed to another interview packet, either the “HIV-/unknown status” or the “HIV+” packet
Using DISHA resources, we will know the HIV status of some of the clients
If the HIV status is known, then the corresponding packet will be used
If the HIV status of the client is unknown, then the “HIV-/unknown status” interview packet is used

We had a training session yesterday, where I introduced the project, and went over the interviews with the 20 DISHA/SureStart community health workers so that they could practice. They were split into teams of 2 and conducted mock interviews. Currently, the interviews are being translated from English to Marathi and hopefully we can start this Friday or next week. I’ll try and attach the interview documents when I can.

FINALLY!!! some direction

So, a week later, and I still haven't had that meeting. One of the leaders got into an accident, so we kept postponing the it. Finally, I got fed up and so did Hans, so he came up with an idea for me. He decided to combine DISHA and SureStart by using the community health workers from both programs as resources. We want to conduct an HIV/AIDS knowledge assessment in the slums, as well as an assessment on the relationship between pregnant women and the associated stigma and discrimination that comes with being HIV+. So, a working draft of the overall question that would be posed to the women in the slums would look something like this, "Can HIV+ women become pregnant and have children and should they?" The community health workers from both programs will conduct these interviews and the results will be used to create a new HIV/AIDS awareness program for the slum dwellers or to improve the already existing awareness program that SureStart has. The aim is to disprove these myths and to get rid of the stigma and discrimination surrounding HIV+ pregnant women in the slums.
So right now, I'm doing a little bit of background research on programs/ interviews/ questionnaires etc. that have already been done so that I can successfuly obtain data that can will be useful in creating an awareness program. I still need to obtain the report on the survey of women that SureStart has collected in order to determine the population size that I need collect data from, but that may not happen till Monday (at the earliest).

End of the AIDS awareness week and a bit of frustration concerning the rest of my time at DGS

On friday, an AIDS awareness event was held at a bar known as Soul where "Herman Death Willy Tail," a band from Scotland staying with us at the volunteer house, sang their song about HIV/AIDS and performed some of their other songs. Outside of the restaurant, volunteers including Rashmi and I tried to get people to where ribbons to show their support for people living with HIV/AIDS and to introduce them to the Wake Up Pune campaign. We both understood that some people wouldn't wear the ribbons b/c of the silence, ignorance, fear, stigma and therefore the discrimination associated with HIV/AIDS; however, at the same time we were kind of annoyed at those who didn't want the ribbons because we felt that in America and especially at Duke, most people and most students would want to show their support. We were handing out ribbons again at the candlelight vigil on MG road on Sunday night. Most people were willing as they began to see others with the ribbons...especially all of the street children who were wearing at least 3 each. So many people came to our booth, picked up brochures, sheets, bootcamp for volunteers, some took quizzes that tested their general knowledge about HIV/AIDS and how it has affected Pune. On the other hand, there were a few that were unwilling. After we asked them to wear their ribbon, they didn't even reply no, rather they just turned their backs to us as if we weren't alive. Maybe it was because we were wearing "HIV Positive" shirts on to represent the campaign (positive about education, awareness and support), but it was just a ribbon. They acted as if we were aking them to contract HIV. Later on that night, we had a vigil and it was so great to see SO MANY people show up. The walking plaza was completely filled, the crowd was on the sidewalk and in the street as far as the eye could see from the stage watching the program, which consisted of dancing by the DG kids and singing by 3 Indian Idols. It was so great to see that many people "wake up" and realize that if 1% of a population has HIV/AIDS is considered to be an epidemic, then the >12% of people living w/ HIV/AIDS in Pune along is something that simply cannot happen, especially if awareness can help prevent an increase in this percentage.
On Saturday we visited the Intravenous Drug User site in Pimpri which is a slum located in Pune, but it's not associated with DGS, rather with the Sahara and the Shara NGOs. It looked like a tin box and felt like we were in an oven...and that's because it was funded by the government. It's a place where they substitute the injection drugs with an oral substitute known as Addnok. They eventually want to wean them off the injection as well as the oral drug to reduce the presence of opportunistic infections. Two ID users told their success stories and it seemed to deeply affect those that were listening. It was definitely something we'v never experienced before, seeing it first-hand that is.
As far as our project goes, our meeting was cancelled on Saturday and changed to Monday so that Hans could attend. However, we didn't have the meeting today either. Again, I'm frustrated because I feel a little lost in terms of what the rest of my stay here will be like...will I have a long term project that I can be engaged in, or will I be volunteering from day to day on random projects that need to be done. Hopefully tomorrow (Tuesday) I'll have a better idea. Rashmi feels that she could take a greater interest in a project that really needs here, such as DISHA or the IDU site, and it looks like I may be incorporating awareness about HIV/AIDS into the SureStart program.

Chaos....thrust into the organization and the Global AIDS Week of Action in Pune

On Monday, Rashmi and I toured the three slum sites that Deep Griha (DG) caters to as well as their crèches. Their main office building is located on Tadiwala road (about a 20 minute drive from our place at the cultural center) where we met the director, Dr. Neela Onwale, and watched a video that showed us all of the projects that Deep Griha is in charge of, such as the education they provide to children as well as adults, DISHA, the eye clinic, etc. We met our contact and volunteer coordinator from DG, Hans Billimoria on Tuesday who set up a meeting for us to meet and talk with the SureStart leaders that afternoon. This week, the SureStart community health workers are in training sessions from 9am-5pm everyday, so we decided to turn our attention to another project for the week since the sessions were in Marathi and we wouldn’t have been able to understand. Instead, we read the instructional handbook that was in English.

During the day, Rashmi and I worked with DISHA, another DG project that focuses on HIV/AIDS awareness in Pune. This week is the Global Week of Action concerning AIDS, so in order to prepare for the street rally occurring on Thursday (5/22/08) and the candlelight vigil occurring on Sunday (5/25/08) we created signs, posters, did some inventory calculations etc. on Tuesday and Wednesday. On Thursday, a few other NGOs as well as DG’s DISHA held a street rally which was a few kilometers long that culminated in front of Pune’s municipal court where Hans was successful in persuading them to send a message to the federal government to pass the HIV bill that is supposed to eliminate discrimination and therefore stigma against those with HIV/AIDS in terms of employment, education etc. (more info can be found at http://www.wakeuppune.org/)

The only communication I had with the SureStart leaders before our meeting was through email; unfortunately, they didn’t have very much email access, so I didn’t get very much information on my project. The truth is that I didn’t know what my project would exactly entail before I came to India and that was a mistake. I only knew my general area of interest. This past semester I had done research on SureStart and similar programs that have already been implemented around the world; therefore, I was prepared to work on help design SureStart and improve on what they had already designed. In my emails, I told them that I could understand Hindi and speak a little, so I wasn’t really qualified to do any communicating in Marathi. So it was at this meeting I was hoping that they could give me some more details on my project.

At the meeting, I found out that they had already done most of the designing and that they had not actually thought of a project for us even though they’ve known since mid-March that Rashmi and I were coming to assist them in any way that we could. When talking to them, it sounded like that they hadn’t prepared anything for us to do, in fact they didn’t even know we were students. They told us that we could do some observing at the training sessions and in the slums. When I heard the word “observe,” I got frustrated because I had prepared for this trip by doing a semester of research in my independent study, received DukeEngage money to travel and have the opportunity to obtain a hands-on experience. Right then and there Rashmi and I told them that we didn’t want to just observe, so then they told us that we could do some computer input concerning medical reports and hospital referrals. I understood and knew that this work was necessary, but I didn’t want to spend my days in front of a computer. I came to Pune to do field work with SureStart; however, after that meeting, it seemed like I wasn’t going to be able to. So, we told Hans, and he said he would talk to them. Rashmi and I are awaiting to hear good news from them at our next meeting with them on Saturday morning.