SOLUTION: approached the road to merry land | My Assignment Tutor

ID NO: 34 RM: Davis ID NO: 34 Sex: Male Marital status: Single Age: 43 Years Village: Kigungu Mayanzi Summary data: Age at first interview43Marital statusSingleMain activityFarmingOccupationFarmerCD4 on diagnosisDon’t knowCD4 nowDon’t knowAIDS-related symptoms now?Dark nails, palms and heels.ART sourceDavisART regimen1st line regimenAdherence?YesIntimate partner?NoSafe sex?AbstainingOTHER useful characteristic e.g. Income sources HH characteristicsTwo people in his household; a helper and himself Interview 1(a) Date: 15-04-2011 Interviewer: RM Duration: 11:00 – 1:25 hours Location: Kigungu Church of Uganda Weather: It was a sunny day with a cool breeze from the lake. Observations Mr. EK was selected to fill the person that was missing from Grade A as the number of people needed from Grade A was less by one person. Mobilization of EK was done using his telephone contact. On the first attempt, the telephone was switched off but after a week, I tried it again and this time, it was on. I told him that I wanted to see him and he said it was okay. He told me to go to Kigungu on the way to Merry land High School and I would meet him there. Good enough, I knew this road very well and I set off on the same day I called him at around 1530hrs. I told him that I would be riding a big motor bike and he said that it was okay. As I approached the road to merry land and moved a few meters, I heard someone clapping his hands as if he was calling out to another. I reduced speed and looked up the church where the sound was coming from. I realized that indeed someone was stopping me. He asked me whether I was the person looking for EK. I said that I was the one and he told me to go to the church where he was standing. I reversed and went to the church. He immediately asked me why I was looking for him. I first introduced myself to him and told him I was coming from Uganda Virus Research institute/Medical Research council. I told him that we are currently conducting a study and I was happy to mention that he was randomly selected to be a participant in this study. I explained to him where I got his details and then he relaxed. He started telling me how bad these days are and if one hears that someone he does not know is looking for him, he gets scared. I assured him that there was no need to worry. I gave him all the information about the study and made an appointment for the next day at about 1030am. Mr. EK is a dark skinned, tall man with short grey hair. When I met him, he was putting on an old shirt with black stripes and long sleeves. He was also putting on a cream like trouser with black sandals commonly known as “Nigina” [because they are cheap and almost every person has them]. His hands, ankles and nails were dark. After the initial contact, he told me that we would meet at the same place (church) for future visits. When I reached for the actual interview, I found him waiting at the church. He was wearing the same clothes as on the previous day except that he had spectacles in his pockets. I asked him whether he was taking me to his home to conduct the interview from there but he told me that his home was not good for the interview because there are very many people in the neighborhood and tenants at his house. He told me that at church, it would be okay because no one would know what we were doing. This made me think that he still had stigma. We looked for a position to sit but where we got first was facing the road so he told me to go on the opposite side because many people were passing through the road. I told him to lead me to the place where he felt comfortable. He then led me to the veranda and he said it was okay there. I sat down and we revisited the information sheet and he then signed the consent form. This time he had come with spectacles because he had told me that his eye sight is not that good and he cannot read without them. It is here that we started the interview. Narrative The participant was born in Bushenyi district. He doesn’t remember the exact year when he was born but knows is that he is 43 years old. He grew up from his grand parent’s place because his mother took him there a few months after he was born because she had separated with his father. He said that he did not get a chance to breast feed like other children because of that. He grew up taking Bushera (a drink made out of millet flour) and white porridge because he had failed to take milk. Every time he would try to drink milk, he would get nauseated and then throw up everything he had eaten. His grandparents were staying in Mawogola. He was told by his grandparents that his mother separated with his father because his father had married a second wife. This annoyed his mother so much and she decided to leave the marriage. She later got married to another man. She had given birth to three children; two girls and him. All the girls are married but he is in contact with one who got married in Masaka but the other is in Bushenyi. He said that his father was a bus driver but he retired and he is currently a farmer in the village while his mother was a house wife. In his childhood days in Mawogola, life was okay because there was enough food to eat, much as he was not staying with his parents. His grandparents were very responsible and they took care of him very well. He said he doesn’t think that there is anything he missed because everything was provided. He said that there were children who were staying with their parents but were not receiving the kind of care he got. So that is why he said that he did not miss anything and he was happy. When it came to his education, the participant said that he did not go far with school. He dropped out at an early stage of education. He continued to say that he joined Yamichwa primary school. It was a small church founded school by then but it is a big school now under government. He studied from P.1 to p.3 and stopped there. Asked why he did not continue with school, the participant said that his grandparents failed to raise money for school fees and his father had run stopped working. For this reason, he could not continue schooling. However, he said that when he started schooling, he had a dream of becoming a businessman or a farmer. This is because whenever he would pass through a trading center and see how shops were well arranged, he would get a desire of owning one sometime in future. Other than this, he was also thinking of becoming a farmer if he failed to make it into the business world. This is because in his village, there were many people who were farmers and were very okay. They owned big herds of cattle, big coffee and banana plantations. The farmers were generally happy people and he realized it to venture in one day. Work When he stopped schooling, the participant started grazing cows at home. He said that he was still very young and the activities that were available for the boy child was to take care of the cows which at least every family in their village had. During this time, he learnt to do all the activities to do with cows especially milking and understanding generally what to do when something happens. At this time, he said that there was communal grazing and most people would bring their cows together for grazing. So at the end of the day, it was the responsibility of the person to separate his cows from others and then take them home. This was his daily routine. He told me that the most interesting bit other than grazing cows, when a group of boys would come together with their cows, they would sometimes come with dogs and hunt. He said that they would hunt antelopes and bush rabbits. This was a very good experience because it would break the boredom of just looking after cows. This would be done twice a week or even more. However, not everyone would go hunting. Some would remain behind with the cows especially the young ones while the old ones would go hunting. It was some sort of team work. The participant told me that he did this for more than 10 years and then decided to leave it. The participant said that he stopped grazing cows at home because he used not to drink milk and he is the one who would go through the rain and sunshine. So he realized that it was high time he stopped this and looked for a paid job. This was because he was taking care of cows at home and he was not being paid anything for his labour. Besides this, he said that he was getting old and did not have anything, so he wanted to get a job and then be independent and also earn some thing. It is here that he went to Kyankwanzi to look for a job. When he reached there, he got a job of looking after goats. When he got it, he was very happy because he was used to looking after cows and he knew this would be a much simpler task. He was being paid 1500 shillings per month. However, since it was his first time to earn money, he thought this was a lot of money but he was later disappointed to learn that this was indeed very little money and as a result, he stopped working at this farm. He worked at this farm for only three months When he left Kyankwazi, he went to Bukomero still in Kiboga district and started selling milk. He would move from one place to another looking for milk to sell. He was doing well with the business of milk selling but he did not do this for so long because the liberation war started. He said that the war started when he had just spent one year in the business. He said this was around 1982. He told me that at this time, people started running up and down because the government soldiers were harassing people thinking that they were hiding rebels. As a result of this, there was shortage of food in the village since everyone was on the run. The situation was very serious and that Obote’s soldiers (government troops) were killing people especially the young people since NRA rebels had recruited child soldiers and were being used to ambush government soldiers. The participant continued to say that one day as they were running away, they fell into the ambush of government soldiers and he was beaten and stubbed while others were killed. Their captors actually left him knowing he was already dead. It is here that he was saved by God’s grace because the National Resistance Army soldiers (NRA rebels then) found them lying on the ground; others were already dead and few were alive. So the NRA soldiers took everybody who was alive to the barracks. They treated all of them and gave them food and they were very fine. As he was telling me this, he pointed to the roof of the church where we were holding the interview from and said; “That is why I always come to this church to pray and thank the Lord for keeping me alive up to now. I pray from here because I belong to the protestant church and I am a devoted Christian here”. [This made me think that the participant had gone through such a difficult time of which he did not know how he would go through well and that he owed God a great deal.] He continued to say that while in the barracks, the soldiers asked the people they had rescued whether they wanted to join the army. It is at this point that he said that he was one of the people that volunteered to join the army. When he joined the army, he started fighting on the front line. This was made possible because he was used to the area and he knew all the roads and short cuts. In other words, he started showing the rebels where to pass. Since he had been selling milk, he was well versed with the geography of the area. He said that he did not spend a long time in the army. In 1985, one of the high ranking officers told all the people who had joined the army that were not educated to leave the army if they wanted because they were not going to benefit in future. When one of the officers told them that they were free to leave the army, the participant went to this officer and asked about the procedure of leaving the army. He said that since he had been injured by the government soldiers, he was advised to tell the commander that he was unable to go on with the fighting. He was examined physically and he was then allowed to leave the army officially. He continued to say that some people refused to leave the army and it is sad to note that the majority of these died while crossing Karuma falls. He said that as they were crossing to the Northern region, they were ambushed by the government soldiers who had camped in northern Uganda. That is why he goes to church to thank God for taking care of him and helping him to make a wise decision to leave the army. He continued to say that two weeks after leaving the army, the NRA rebels took over power in 1986. When he left the army in late 1985, he went back to Bukomero and started cultivating. He did not do this for long because his friend came to Bukomero and told him that there was a company going to construct the road to Fort portal. His friend told him that the company needed some people for various job vacancies. He went with his friend to the company which had its base in Mityana. He was given a job as an Askari but more of a body guard to one of the foreign engineers. He said that he was very happy when he got the job because his boss liked him so much. He would go with him everywhere he went. He said that his boss taught him how to drive a car. As he was saying this, there was a Toyota Hillux pickup passing through the road. I had not yet seen it and I saw him pointing his finger behind me saying that; “That’s the car I was driving with my boss in Mityana” [He said this while putting on a broad smile”. This made me understand that he had good memories of the job. He said that he was being given a salary and allowance]. However after four years, the World Bank stopped funding the road project and all the foreign engineers went back to Nairobi where the headquarters of the company. The remaining local workers stopped working except those who were guarding the company machinery. When he left Mityana, he got a job as a farm manager in Gayaza. There was a rich man who brought him to Gayaza to take care of his land and also supervise other workers who were there. He said that he did not stay in Gayaza for so long. He was there for about two months and his employer then brought him to Kigungu in 2001 to take care of the land. He said that there were some people who wanted to steal the land and there was a need for someone to be there. He continued to tell me that his boss gives him some money as an allowance but not a salary. This is because he gave him the right to use the land for anything he wanted. Currently, he uses it for agriculture. He has planted coffee and sugarcane for income generation. He also plants food crops like bananas, beans, sweet potatoes and cassava. Intimate relationships The participant said that he first got a girl friend in 1988 when he was in Kiganda; Mityana district. He said that the girl had finished a diploma in Primary Education. This woman was staying at her home and they would meet once in a while but they were together for four years. He said that they had a baby boy who is about 18 years now. However, when he left kiganda for Gayaza, he left this woman together with the child behind. He said this was because he did not have money to buy land and build a house for them. He continued to say that as we speak, they are still living at her home. He also told me that in 2007, he got another woman. He was with her for about one year. He said that this woman was from Masaka and it was his sister who had spotted her for him. He said that as he was in Kigungu, his sister who stays in Masaka called him and she told him that she had got for him a nice woman to marry. She invited him to Masaka to see the woman. When he went to Masaka and saw the woman, he liked her and the woman also liked him. He asked her whether they could come together to Kigungu and she accepted. He thinks that most of the ground work had been done by his sister. This woman had one child with another man who had impregnated her when she was still in school. She had finished senior four. He said that he did not have any child with her since they did not stay together for a long time. They got a disagreement and she went back to Masaka where she had come from. Since she was staying alone operating a bar, it seemed to him that he would not be able to stay with a man. That is why she left and this was a woman he thought he would marry. When she left, he said that he got about two other women whom he was moving out with. He said these were just one night stand women and he was not with them for a long time. Just two weeks or one and they would go. He said that they are still alive. Story of illness After a short while when the woman from Masaka left, the participant said that he got a boil on the right hand breast. It was very small but painful. When he pressed it, it started spreading to the other side of the body. It is here that he decided to go to Kigungu Health center for treatment. He said that he was very lucky because the health workers at Kigungu are all his friends. When he reached there, the in-charge looked at him and asked him to go and take an HIV test. He started thinking whether there was a link between the small boil and HIV. However, since it was a directive from a doctor, he had to go for the test. He told me that he was taken into a room and was counseled and later the health worker took off his blood. He continued to say that it did not take long and the doctor called him in his room. When he entered, the doctor told him that the HIV test had turned positive. He said that when he was told this, he did not feel anything in particular. He did not get scared nor think about anything. So the doctor there and then gave him septrin tablets start swallowing immediately. He however said that the problem came when he was going home. He started thinking how he was about to die. When I asked him why he thought he was about to die, he told me that he knew that when one would get HIV, he/she would die in a space of six months. So he further told me that whenever he met his friends, he would feel like saying to them; “Bye bye my friends, I am going to die soon”. But he could not say it because he did not want anyone to know it. He further said; “When I reached home, I was bed ridden for two weeks thinking I was going to die soon. I could not believe that I would be dead in a few months. He continued to say that it was a common saying that when one is diagnosed with HIV, there is no way one would survive. The result would be dying as soon as six months elapse. I was a worried man until I went back to Kigungu to talk to the doctor who is my best friend”. One of his friends was looking for him and he would come to his home and find him in bed and then he asked Mr. EK why he was spending every day in bed. EK told him that he was not feeling well. His friend asked him whether he had seen the doctor and his response was no. His friend told him to wake up and he escorts him to the health center. He said that he could not refuse because he knew that if he refused, his friend would suspect something. So he woke up at once and went to the health center. When they reached there, he went to see a doctor without saying anything to his friend. The doctor was very happy to see him and he started asking the participant how he was faring. The participant told him all his fears of how he thought he was going to die in a few months. The doctor comforted him by telling him that he would live for as many years as possible because he was going to be introduced to the drugs that help in reducing the morbidity caused by HIV. When he heard this, he said that he partly became excited and later thought that the doctor was preparing him to die anyway. However he was very happy when he made six months but on the last day of the fifth month, he said there was panic because he was not sure that he would make it much as he had been encouraged by the doctor and other people who were living with HIV. When it came to disclosure, he said that he cannot tell anyone because people talk a lot. If he happens to tell anyone, the person will start telling everyone how he is infected and in a short time, it will be the talk of the place. Besides, he said that his doctor told him to keep it a secret. The doctor told him to keep it to himself and the doctor. He however said that one friend could be knowing his status because when he was going to start on ART treatment, he was told to bring a friend who would keep reminding him to take drugs. And also remind him to refill his drugs once they are finished but he did not mention to him that he was sick. Talking about support, the respondent said that his boss supports him financially because every time he comes by to check on his land, he gives him some money. He said that this is the only form of support he gets from another person. However, he said that he supports himself most of the time. This is from the work he does like selling sugar cane and coffee when it is the season. When asked whether his friends help him with anything, he said that other than giving him company in form of conversations, there is no other form of support he gets. It is here that he said that his doctor at the health centre has helped him so much with counseling and giving him information on HIV/AIDS and how to conduct himself to keep healthy. He continued to tell me that his doctor has also helped him a great deal to come to terms with his situation now. This is because the doctor has been there for him every time he needs to talk to someone, he goes to the health center and they chat. It is at this point that I asked him about acceptance and he said that he has indeed accepted his situation because he takes his drugs on time and he is hopeful that he can live a long life. When I asked him what acceptance meant to him, he told me that it is acknowledging that someone is in a certain state and he works upon getting out of the problem or even working hard to reduce the effects of the situation that he is in. He said that he owes a lot to his doctor because without him, the participant would be dead by now. [When he told me this, I realized that the doctor has really done a great job to help Mr. EK. I also noted that when he started talking about HIV, he would not make three sentences without mentioning his doctor at Kigungu Health center]. Accessing ARVs The participant said that after two weeks on septrin, he went back to Kigungu health center and asked the doctor when he would start on ARVs. The doctor told him that he had to go to Grade A to test his CD4 count. He went to grade A and his CD4 count was taken and he was told that he was still strong. I asked him how many CD4’s he had and he said that he did not know how many. The doctor just told him verbally that he was okay. After this, he was told to go back after three months. On his next visit to grade A, he started learning about ARVs. This is because, before any one is started on ARVs, he has to first undergo some form of training on what he is about to start, he said this kind of sensitization went on for about a month. At this time, they think that a person is ready to start taking the drugs. I asked him about what the training covers and he said that it is basically counseling and familiarizing someone with what to expect when they start on ARVs as well as the effects of ARVs in a human body. He said that the health workers tell them that ARVs work differently for people because some may experience bad dreams, skin irritation, loss of appetite and nausea. On 5th June 2009, he started taking ARVs from Grade A after a month of learning about ARVs. He said that; “When I started on ART, my skin and nails darkened, I got nausea and lost appetite. I even used to fear taking tablets. So this was a big challenge to me because of adjusting to taking tablets every day for the rest of my life. However, I had no option but to take them anyway if I had to remain healthy”. He told me that when he realized that his skin was changing, he became very scared and he confirmed that he was going to die soon. He continued to say that he thought that the ARVs were meant to make people die very fast. When I asked him why he thought like this, he said that he initially thought that if someone gets infected, he dies after six months. So when he was told that he would live longer on ARVs, he was very happy but when he started on the drugs and they started affecting his skin like that, he thought that the drugs made people die quickly. So he went to his doctor in Kigungu and told him about what he was experiencing. The doctor told him like the other health workers at Grade A had told him that he would experience some changes on his body. His doctor also told him that his body’s reaction to the drug was minor and that it would clear very fast. He continued to say that he started taking milk which he had failed to take from childhood. He said that when he started taking ARVs, he would feel like taking a cup of milk every minute. He also said that up to now, he takes milk without water. He could not take the drugs without eating at the beginning but now he can take it without eating and nothing will happen to him. The participant said that every time he takes the drugs, he feels like going to sleep. This has stopped him from moving in the evenings to chat with friends. He also stopped drinking alcohol when he started taking ARVs. This made people start questioning him why he had stopped drinking. He told them that; “Nakoowa kukolera abaggaga” in this context, he meant that he got tired of giving money to rich people because the bar owners are rich and he still gives them his little money. He said that the time he spent getting drugs from Grade A was a tough one. He would walk from Kigungu to Grade A sometimes very hungry and he would be made to pay 500/= of which he did not know what it was for. He said that it was a stressful moment. After three months of receiving treatment from Grade A, he went and told the in charge at Kigungu that he wanted to be transferred to Kigungu because it was closer. The doctor gave him a letter to take to Grade A and he was given another letter to take to Kigingu and that’s how he started getting treatment from Kigungu. He said that he was among the first people to get treatment from Kigungu The participant said that; “I attended a workshop that was focusing on client counseling. It was organized in that one person came from each center that provides ART and I was the one chosen to represent Kigungu. We met at Lake Victoria hotel for a training that lasted two days”. At Kigungu Health Center, people who have been on ART for a long time are the ones who provide counseling to new clients. As he said this, he called himself a senior person on the issues of HIV/AIDS at Kigungu health center. This is because he was among the first people to start accessing ART from there. He also feels that ARVs have strengthened him and therefore given him a second chance to live. This is because he feels strong and he is able to do his work without any challenge. He continued to say that ARVs are like a car and a patient as a driver. When I asked him what he meant by this, he said that if a person uses the drugs as instructed by the health workers, then he never gets a problem which is the same as a car. If a driver drives recklessly, then the car is likely to kill him It is here that I asked him how many tablets he takes a day and he said that he takes four tablets a day. That is two ARVs (one in the morning and the other in the evening) in addition to two septrin tablets also taken; one in the evening and the other in the morning. He said that he takes these tablets without forgetting because he knows they are part of his life and he cannot do without them. Coping The participant said that at first, he had failed to adjust and come to terms with the situation he was in. However, when he came to Grade A for ART and found that there were many people on drugs, he realized that he was not the only person who was sick but there were many others. As he was telling me this, a group of women from the garden were passing by. [when he saw them, he pulled his spectacles very fast and put them on in a disguised manner. I made a joke saying that it is good to put on spectacles to shield the blazing sun just to hear what he would say]. He said that; “One of the women knows me very well. I pray with her at this church. I do not want her to recognize me because she will ask me many questions the next time we meet”. He continued to say that people in Kigungu a rumormongers that is why he did not want them to identify him. [This made me think that this participant is stigmatized and does not want anyone to link him with it]. He also said that his doctor at Kigungu has helped him to cope because he has counseled him and told him what to do and he is following the instructions of his doctor. He is also hopeful that one day, the drug that cures HIV will finally be discovered and it will cease to be a threat to mankind. This also consoles him The participant also said that he plans to get married one day. This is because he feels dying alone is not a good thing. However, he hopes to meet a woman who is also infected so as they can live together. When asked why he particularly needed an infected person, he said that to him as a Christian, it is not fair to get a person who is not infected because she can end up getting infected also. He said that he thinks about this all the time because when he is from the garden and finds nothing home to eat, he wishes that if he had a wife, he would have at least found something home to eat. He said that he currently stays with another man whom he got from the village to help him with farm work. It is here that I asked him about the woman he left in Kiganda-Mityana and he said that he is still in touch with her because of his two children she has. He said he still goes to Mityana to check on them but he never sleeps there. He goes for a few minutes and comes back. He said that he has two boys with her. The one she gave birth to when he was still in Mityana and the other she gave birth to another baby boy a few months he left the place. He said that; “I have been thinking about my children and I wanted to work hard to buy for them a piece of land but now, I have no energy to work hard. Besides, during the counseling sessions, I was advised not to work a lot because my body will be weakened further. I am not sure whether he will achieve this”. At this point, the interview ended and I handed him a bar of soap in appreciation of his time and information he had volunteered. He also assured me to call him whenever I wanted something from him as he would be readily available. Throughout the interview, planes were landing and taking off. They produced a lot of noise as the church where we were is adjacent to the airport. However, this did not stop us from holding our interview much as we would pause every time a plane would be landing or taking off. ***End*** Interview 1(b) Date: 19-04-2011 RM: Davis Interviewer: RM Duration: 10:30– 12:30 hours Location: Kigungu COU Observations On this day, EK was wearing a white T-shirt, a brown jacket and a brown pair of trousers commonly known as “Khaki”. He was wearing the same black sandals he had during the first interview. I called EK before setting off from the office to Kigungu and he told me that he was at Kigungu health center and it is where I would find him. We were scheduled to meet the previous week on the 26th of April 2010 but it was impossible because it rained so much and when I called him there after, he informed me that he was not around and we scheduled our interview for 3rd May 2010. As I approached the Health center, I called him again just to confirm whether he was still around. He told me to wait for him outside the health center. In a few seconds, he came out of the health center gate on a bicycle. He told me that he had a chest infection and had come to seek treatment from the doctor. However, the queue was long and he was about the eighth person to be served. He requested me to wait a bit so that he can first see the doctor. This gave me an opportunity to ride to Kigungu landing site. When I reached the landing site, there was no much activity as the fishermen were spreading their nets to dry while other people were seated around the Catholic Church. As I stood along the shores, there was a boat and two men were offloading firewood. I greeted them and we started conversing. My aim was to ask them where Bussi Island was. I asked them jokingly, where is bussi from where we were. One of them pointed across the lake to a big mass of land and he said it was the Bussi I was looking for. He told me it was about two hours ride from Kigungu though it looked nearer. He said that there is only one boat that goes there. It leaves at about 1600hours in the evening and comes the following day very early in the morning. As I was still conversing with these guys, EK called me that he had finished his business at the health center. I jumped on the motorcycle very fast and went to the Health center where I found him outside on his bicycle waiting for me. It is here that we preceded to Kigungu Church of Uganda our venue for the interview. This interview was conducted in Runyankole and some little Luganda. Narrative When we reached at the church, he started narrating to me how he was not feeling well as he had developed some cough and his chest was hurting. I asked him whether he had been given medication since he was coming from the health center and he told me that the doctor had told him to go back the following day as the drugs he was to be given were out of stock. He continued to ask me; “Don’t you think we are going to die? Because I heard rumors that ARVs were out of stock at the health center. If they are indeed out of stock, then our end has come. Is it true that they are out of stock?” he asked and I told him that [I have heard about it but it was a temporary situation that would be rectified as soon as possible. This gave me an impression that the participant clearly knows the importance of ARVs in his life]. At this point, I asked him to tell me more about his siblings and he said that he last saw them three months back. There are two girls and all are married. One is married in Masaka and the other one is in Mbarara. He said that visiting them is easy because he passes through Masaka and then proceeds to see the other one in Mbarara. However, he said that there is no significant support they give him because they live very far and the best they can do is to talk on phone. He continued to say that when he goes to visit them, they think he has a lot of money since he stays in Entebbe yet “Ninyeyaguza orugusyo” this means that he is also a poor guy. In fact, they expect him to support them financially. He continued to say that he has spent about six months without seeing his grandparents who raised him. I asked him whether he has plans of going to stay at his grandparents place. He said that his grandparents are good people and they can give him land to build on but he said that; “Tindikutekyereza kuza kutura omukyaro ahatariyo mubazi gwa sirimu”. Meaning that he cannot think of going to live in the village where there are no ARVs. I asked him about his plans if his boss asked him to stop working and he told me that for the 22 years he has worked for him, he has turned into his child and he does not think that he can tell him to leave the place. He also said that he can even ask for transport to go anywhere and he gives him. He told me that his boss is about 55 years and he is a permanent secretary in one of the ministries in Uganda. So his boss treats him like his own child. Financially, he said that his income is not very steady because he is a peasant. He said that he relies on seasons and that is he earns twice a year. His major income is from coffee and sugar cane. He continued to say that he earns approximately 6000/= per week. He said that after about 6 months, he earns 40,000/= but this is not constant as it keeps fluctuating. The other problem is that the price of coffee also fluctuates a lot. A kilogram of coffee can go for 500 or 600 shillings. He told me that he used to plant maize but the land became small and can only accommodate coffee and sugar cane besides food crops. When I inquired more about the support from his boss, he said that his boss can even spend almost a year without checking on him. They talk on phone but when he is in serious need of money, he sends him some money about 100,000/= to use. I also asked him how is managing alone without any female partner and he told me that these days, he does not think about women. This is the reason why he has spent a long time without seeing women and he feels moving about is not a good idea. I asked him what he meant by it is not a good idea and he said that he was told that when someone is infected with HIV and involves himself with women, he becomes very weak and can even die very fast. Also, during counseling, he was advised by his doctor not to move out with women or be faithful to his wife. So since he was not in any intimate relationship, he decided to keep away from women. He however said that women are there and interested in being with him but the problem is that he has no money for feeding them. He continued to tell me that women sometimes tease him by asking; “Naye gwe wabaki”? meaning that women ask what happened to him and he tells them that; “Nze Nalokoka” which means that he got saved but they continue saying that if he is saved; he can go ahead and look for the saved one and then marry. I probed about whether he was using any form of protection with the women he was moving out with and he said that he used to use condoms but after getting used to each other, they would stop. It is here that he told me about the woman he suspected to have infected him and he said that for that particular woman, she had lost her husband but he learnt about it when it was too late. He told me that he is planning to get married in future. He said that he is going to first get treatment for the chest infection when he is completely healed, he will seriously look for a woman to marry. The participant continued to tell me that when people are talking about people living with HIV, EK feels so bad and if he is part of the group, he tells them that the disease is everywhere and quickly withdraws from the group and goes way. However, he said that he cannot tell other people that he is sick because one can get drunk and even start abusing him and telling everybody that you are sick. That is why he withdraws and moves around by the time he comes back, such stories have stopped. People talk a lot and if they get to know, by the end of the day, everyone in the village knows that you are infected. That is why he keeps this to himself. People say that “Mwali mutambula nga temulaba”? This means that they were moving out with men or women without thinking of the outcome. The people in Kigungu think that everyone is sick. It is here that I ask him why people think that way and he said that it is because of many fishermen and many prostitutes. Majority of the people move out with these women and the general perception is that people who live along the lake shores are infected. He continued to say that this has been a very misleading factor and this has contributed to the recklessness of people in managing their lives. When I asked him about his view, he said that it is true majority of the people in Kigungu are infected. He said that on reaching the health centre, people sit according to the order in which they came in. The health workers then read names and whoever is called enters the doctor’s room. When one enters the doctor’s room, they are asked how they are feeling while the doctor is writing down everything. They are then provided with treatment for extra diseases and given ARVs dates for refill. He continued to tell me that the Doctors are very good. They are professional because they do not abuse any one. Other than this, people on ART at Kigungu Health Center are few and health workers know each patient by name and face. He also compared Kigungu and Grade A saying that there were many clients at Grade A and someone would take a long time to see the doctor. He said that when he was transferred to Kigungu, he was relieved of many things including transport costs, the 500 shillings he was required to pay at Grade A before he could be given drugs, long distance and also the many people. While at Grade A, he would need almost the whole day but at Kigungu, he takes an hour or less and he is done. At this point, EK told me that he takes the ARVs on time. When it clocks 8:00 Am in the morning, he takes for the morning and 8:00 pm for the evening; it is usually like eating bananas. He cannot forget to take the drugs. Every time he is going somewhere, he carries his drugs. (I gave him a scenario just to see whether what he was telling me was right. I asked him what he would do if his boss called him to find him in Kitooro and on reaching, his boss tells him that he would like to go with him to Kampala for two days and he is in a hurry). He said that “Tikikabaho. Konka nabye kyabaho, nintekwa kubanza nagaruka omuka narireta. Nyowe tinkaza ahantu ndikumanya ngu ninza kurarayo, nkagyenda nteine mubazi gwangye”. This means that it cannot happen. But if it happens, he can first rush home and bring his drugs with him. He told me that he can never go anywhere when he knows that he will spend a night there and fails to take his drugs. Disclosure I also asked him whether he hopes to disclose to other people especially his family and his boss. He said that; “Eki nekihama kyangye nkakyebonera ndafa nakyo. Omushaho wangye niwe arikukimanya. Hatishi abandi bantu, nimbanombagambira ngu bampeki”? Meaning that this is his secret and he will never tell any other person about it. His doctor is the one who knows he is HIV positive. Besides, why would he tell anyone about it? He sees no reason in disclosing to anyone. He continued to say that some people ask him why he never walks in the evening and he tells them that he is always tired from the day’s work and rests in the evening. I asked him why they ask him this and he said that before he was diagnosed with HIV, he used to move around the village in the evening but ever since he got to know his status, he rarely moves in the evening because every time he takes his drugs, he feels like resting. He continued to say that “Every Wednesday and Sunday, I go to thank God for having helped me stop drinking alcohol. I realized that alcohol would make me forget taking drugs and it also contains acids which might not go well with the drugs I am taking. I used to drink all types of alcohol from beers to local brew. I sometimes feel like taking “Malwa” (local brew made of millet and it is linked to People in Eastern Uganda) because it was his second favorite he continued to say that, if I get “omulamba” (local brew made out of sorghum commonly taken in South Western Uganda) I take it because it is light and very delicious. For the days he has seen me through, even the soap you gave me, I came and thanked God for it. I thank the lord that has seen me through all this”. The participant also said that he used to drink alcohol over the weekends and at night when he was still drinking regularly. He said that he did not want people to see him drinking because he respected himself so much that he did not want to involve himself with people drinking in the early hours of the day. When it came to his daily routine, the participant said that he wakes up at 7:00am and thinks about what to do. He prepares tea and at 8:00 takes his drugs and takes tea as well. He then goes to the garden to do some cultivation and by mid day, he comes back from the garden to prepare lunch. After lunch, he rests in his house or goes to his friends. He however said that he does not usually move a lot. He is at home most of the time. When I asked him whether he still supports his children, he said that he earns very little. He is not in position to extend support to them. Besides this, he takes long to go to Mityana to check on them. He told me that he can take a year without seeing them. He continued to say that what consoles him is that at the mother’s place, they are very rich and can take care of the children. Other than this, the children are old and can take care of themselves. He however hopes to get money to buy land and build. He will then think of living with them. The participant said that he realized that the doctor at Kigungu was the person who would help him live longer. This is because he is the one who took him through counseling and told him about the effect of the drugs like dizziness, nausea, loss of appetite among others and how to deal with them. Besides, the doctor is a very caring person. When he meets him, he asks him about everything and also advises him on how to go about a few challenges especially to do with health. About his diet, he said that he loves eating bananas and fish. He told me that he cannot spend a week without eating these. He also eats meat, sweet potatoes and posho. He however said that his diet is affected by lack of enough money to sustain it. Sometimes he has no money to buy sauce. He mentioned something that when the people in the community see someone looking healthy, they start saying that he is on ARVs because they have grown fat. People have a mentality that when someone starts on ARVs, they become fat. At about 1300hours, our interview ended. I handed him a bar of soap and he was very happy. He thanked me again for the soap and he told me that when the first interview was finished, people started asking him what he was telling a police man. They had mistaken me for a police man because of the riding suit I was wearing. He told me that this made him happy that people could not figure out what we were talking about. Interview 2 RM: Davis Date: 20 – 10 – 2011 Interviewer: RM Duration: 1 and 21 hours Location: Home Introduction When I met Davis for interview 2, I found him at his home though during the first interview, he did not allow me to go there, I had promised him that we shall keep in touch and when I called him for this particular exercise, he was coming from the health center as he had gone to check on his friend. On that day, he told me that it would not be possible but he took me to his home. I did not really reach his house as he just pointed at from a distance and he told me to back on this particular day. Before I set off from the office at about 9:30 in the morning, I called him to confirm that he was at his place and he told me that he was around and that is when I rode to his place. When I reached there at about 9:50, I found him in the house but when he heard the motorcycle, he came out of the house with a radio. In front of the house is a big log under a jack fruit tree where he led me to sit. He lives in a rather old house with rusted iron sheets that used to be for the rich people in the 80’s. It is surrounded by mango and jack fruit and avocado trees and there is a small garden of sugar can on the other side of the house. It stands on approximately half an acre and the rest of the land has bananas, coffee and yams. On the other side of the house is a small garden of vegetables commonly known as dodo. The compound was well kept and neat, He was dressed in a grey trouser, a checked shirt and black sandals. When we settled down, I read for him the information sheet and he told me that it was similar to the first one I had given him but what had changed was the recording. He signed the consent form and we set off to begin the interview. He speaks both Runyankole and Luganda. At this point, I asked him which language he preferred using and he said Luganda because no one would be able to recognize his voice. However, he told me to hide the recorder because many people come to his place. Indeed when we were in the middle of the interview, three women came at different times, one came and wanted to buy banana leaves and the other came with a knife and went directly to pick banana leaves. The third one had come to ask Davis to assist him with the boy who usually helps him to work around. These people kept distracting our interview and he would see them from a distance and he would then tell me to pause as they were coming to his place. Whenever one of them would go, he would tell me to be fast because many other people usually come to his house at lunch time. However, the interview was successful and we were able to complete it before the many people could come. Int: I am very grateful for giving the permission to record your voice as we discuss what you have gone through ever since you got know that you have the HIV virus and the changes in your life since then. Even other thing you hope to do in future. That is what we are going to go through today because the other time, we were looking at what you went through after knowing your status but now we are going to focus on the changes that you have experienced. I request you to be audible enough because I want our recorder here to get what you will be saying properly. Isn’t it? I thank you once again. Res: I have understood that. YOUR JOURNEY OF ADJUSTING Q1_Int: How much time has passed since your diagnosis? Res: About three years. Int: Which year did you test? Res: It is now about three years because I spent a whole year taking septrin. So I have spent two years on ARVs and in the year I tested, is where you should begin counting. Int: Counting back words, three years is like 2008? Res: Yes it was in November. Int: Did you believe/accept the results you were given after diagnosis? Res: I accepted the results immediately because I did not get worried and I had seen my friends who encouraged me but I spent two months because I was tested in November towards the end but I started on the treatment in January 20th to say that I am really sick. I first got rid of the fear I had and I went on the 20th; I was registered and sent to Grade A. Q2_Int: Which factors (things, events, people; circumstances) have changed the most since then? Res: The way of life; malaria used to disturb me so much, headaches also used to disturb me and life was not good. Int: Before getting to know your status, headache used to disturb you so much? Res: Headache used to disturb me and malaria. Int: Is there anyway your relationship with other people changed? Resp: It has never changed because I have never told them my secret. Int: You still relate the way you used to relate? Resp: I used to take some alcohol when I had just known and used to have a strong headache and malaria, I stopped taking alcohol before I even tested because when I used to take some alcohol, I would get a headache and I said to myself long time back, I used not to get a headache. What is the problem now? At this time, I stopped drinking alcohol for about one month and went to have an HIV test. Int: You even stopped taking alcohol? Res: I no longer drink alcohol completely even sodas because things that contain acid, I have reduced their consumption. I drink mostly water. Q3_Int: Which things have most encouraged / promoted your adjustment to living with HIV? Res: When we went for a seminar, we learned and after learning, and all of us were in the seminar, I became firm like a hero who has joined a war because this is like war, you cannot retreat. When I got to know that I am infected, I had nothing to do and I said to myself be strong so that I see to it that the government takes care of me and I get medication. I became strong and now I do my work. Int: You talked about a seminar; what was the seminar about? Res: The seminar was focusing on telling people who are infected to live positively like to stop worrying, stop taking alcohol, stop taking cigarettes, stop moving out with women and if you have a partner, be faithful and use condoms always. Int: Is there any other thing that has encouraged you? Res: What encourages me is reducing on my thoughts and doing my work because that is what I remained with. I do my work as you can see my place, I am at work; I cultivate my gardens, I get some food and eat rather than looking for work to do for money and then buy food. Q4_Int: Now, what is the most important thing / factor / circumstance that helps you to cope? Res: Coping with the situation is stopping taking alcohol because when I stopped taking alcohol, I felt strong because if I had remained taking it, it would affect me badly. You know alcohol can make you things that you would have not done. When you take some alcohol, you think about many things and when you come across a prostitute, you are like look at that woman. So all that we stopped and we are there by God’s grace and our country. God is the one who takes care of us and those who treat us have helped us with medication is accessed very well. Q7_Int: Now, which factors have made your adjustment most difficult? Res: What has been most difficult first of all, ARVs affected me very much and my skin darkened and I looked like a log but later I sought medical advice and the doctor told me that that is how the medicine reacts, you will get used after about two months. I got fine and even swallowing it was a problem it was as if I was going to fight someone but now when time for swallowing comes, I swallow with my cup of tea ready and my food or an egg as well. Int: Other than the drugs, is there any other thing that has made your adjustment difficult? Res: Maybe in my financial situation; I no longer have money because I no longer move around like I used to do the other time. The other time, I used to move looking for some money but now I do not. I stay home and have no money that makes it difficult and no other thing. If I had something that helps me with buying like soap, sugar and little money for up keep that would be okay. In future, I have thoughts of try and look for money so that I can build for my children a house because I have my children but you can die and leave them in the air and this also makes me feel bad. This actually makes me very worried yet I have to buy a plot and build for them a house. Q8_Int: How could this problem be overcome, is there anything that you could do to overcome this problem? Res: There is nothing I hope for in future except trying because I do not I do not have permanent job that I can do because I did not go to school that I will get an office job yet you see those that have degrees are also unemployed. For me with little education that helps me to know where I am going and where I am and also reading my Bible. I know how to read the bible and I read it so much and it has been an important factor in encouraging me with my radio. Int: How do you think this problem can be solved? Res: It is God who knows that because I have no way I can explain it to you because I am not in God’s plan. God can decide and I die today and at the same time, he can decide and I live longer so I do not know God’s plans. So I cannot explain God’s plans for me. Q5_Int: Are there things you do to keep yourself healthy / improve your health? Res: What keeps me healthy is moving around and when time for swallowing my drugs, I get and swallow and rest a bit for it to settle and when you swallow the following day in the morning, you go and do your work. The other thing is that when you swallow this drug, it does not need that you sit in one place because you can be lame. You have to keep moving around. For me I have my bicycle and I ride it around and go to town and come back. By the way, I was there yesterday. This is to make sure that blood flows properly in the body and so is the medicine. The other thing is drinking a lot of water because we are advised that water transports the medicine to all parts of the body. Eating well is another thing though it is not easy these days because of the high prices of commodities like milk and sugar. However, to me sugar would not have been a problem but if I get milk as you know for us we are used to taking milk, I can take it without sugar. Int: Do you try to feed well – I see you have vegetables? Res: Yes I try; I eat greens, pumpkins if I get them, matooke as you see in my garden, yellow bananas like that. And when I get cassava, potatoes I eat because what I do not like is only one type of food. Even if I go to a hotel and I find they only have one type of food, I do not eat. I always want some matooke, cassava, a potato, greens and posho. For sauce, I do not eat meat because it does not go down well with me. Int: What kind of vegetables do you use? Res: I mostly use ground nuts, beans and fish. I also like chicken but for beef, even when I had not fallen sick I used not to eat it well except the roasted one. Q6_Int: Do you think you have any direct influence / control over your illness? Res: I know that I have the illness but I try to control it by reducing on my thoughts without putting too much thought on the illness and I will go forward. If I have the illness, I have to eat well, do my work and I decided to put everything behind me and move on with the world. If God can help us and our colleagues in research get the medicine that cures AIDS since the whites are known for inventing new things, let them help us so that they do not come and tell us that come for sensitization but they should tell us to be hopeful for the future because when you are teaching us and you are not encouraging us, we become hopeless. Int: Now you tell them to be…….. Res: Yes, yes we are hopeful like Jesus Christ said believe that resurrection will come. Int: We are also hopeful that the drug will finally come Res: Amen Int: You have decided not to get worried? Res: There is nothing am thing about except what I have told you like dying without building for my children a house or without buying for them a plot of land. At least building for them a small house of about ten iron sheets is the only thing I think about. There is no other thing I am looking for in the world because I am not looking for treasures (riches) but when you die, and you leave your children somewhere at least they say that our dad died and this is where we buried him. So this is the only challenge I have. Q9_Int: Has the type of work you do (income generating activity) changed since you were diagnosed? Res: Yes my work changed like I told you that I no longer work very well like I used to do because the other time, I used to move here and there looking for money but now I cannot do this as I no longer move a lot for business. Int: What were you doing whenever you would move? Res: We were dealing in petty business like selling matooke, delivering milk and it is where I got problems and we were robbed and I had to quit the business and I came and got a friend and we started dealing in cows. I have been through very many problems of money much as I got this illness. Int: Now work changed? Res: I decided to sit home now because I do not have anything to do. Int: So do you do some digging? Res: I dig because If I do not, what will eat? And I have energy now! I dig and when I get a hoe, I dig and come back at around 2:00 pm and you cannot know that I am sick. Int: That is good, can we say that you work so much? Res: I have to work to make sure that I get what to eat but when I do not have enough energy, I do go to dig. I just remain home doing household chores but when I am strong I go for it. Int: Now, how has this affected your finances? Res: It has affected so much my finances. Before I used to get some money like I explained to you that I used to move and would earn monthly which is not the case today. I earn something seasonally but now the crops did not do well because the soil is exhausted and it has been a hot season. There is nothing else but before, I was a business man and would move here and there and get some money that would help me. I was still preparing for my things and I got a strong headache and I decided to go for a test. When I tested, I found that I was HIV positive and it is here that I decided not to infect any other people by moving here and there. I therefore decided to remain home. Q10_Int: Has your motivation for / attitude toward your work changed since your diagnosis? Res: I have already explained to you that my motivation for work changed a bit because the way I was working getting money is no longer the way I work. Imagine a person who has been earning monthly and time comes and you cannot earn something, do not you think that the situation changes? The incomes have gone down like the dollar am down so am I and I live by God’s grace. I get some little money for subsistence like twenty or thirty thousand shillings. Int: That has not stopped from working? Resp: Yes I work because if I sleep, what will I eat? If God bless me like the Muslims usually say and I feel I have some energy, I wake up and work hard and I also work because we are advised that it is not good to be in bed all the time because you can develop high blood pressure. Q11_ Int: Do you have a support network? Res: Okay, when I get some money, there is a man who helped me to do work that I cannot manage to do and I give him some money to make sure that my place is kept tidy. Int: Are there people who help you financially? Res: I do not have. Int: The other time you told me that your boss used to give you some money. Does he still give you? Res: These days, he is not in the country. Ever since you were here, he went for studies. Int: So you do not have people who help you in that way? Res: I do not have. Int: How do you cope with having no support network? Res: Like I have explained to you, in this world, you have to be creative; I wake up and look around and decide on what to do so as to earn something like thirty thousand and I have to give someone to help me around ten or twenty thousand shillings and the remaining ten thousand, I buy source like that. Like I told you that in this world you have to be creative because if you sit, you will not earn anything for example those who say walk to work, people are talking for nothing to stop work working; just work. Q12_ Int: Do you think you will require more help in time to come? Res: I need so much support if God grants it because the situation is not all that good. Int: What kind of support do you require? Res: Support like I have told you, whom I will turn to for support. I would like to buy a plot where I can build for my children. Now whom can I turn to for this kind of support apart from the Almighty God, I do not know whether our friends the whites can help us so that we can have where to leave our children. Q13_ Int: Let go on. Conversely: Have you perhaps taken on any roles in supporting others through their journey? Res: Yes, we teach our colleagues by visiting them and consoling ourselves by asking how they swallowed their drugs. Asking the time they take their drugs, if they drink alcohol to stop because it can cause some problems and they say I swallow at such and such a time or I have forgotten and you tell them that you see, if you had not taken alcohol, you would not have forgotten and the other thing is that if you take alcohol, you have to eat very well because it brings hangover. Why don’t you stop taking alcohol? This is how we advise majority of the people our situation and they also tell us about theirs and by the time we meet again, they say that you advised and now I reduced on taking alcohol and I continue to tell them that do not just reduce but stop drinking completely because if you know that your car knocked and it is in the garage being worked on, you want to knock again? Because you know that the car is still being worked on. (He was relating this to his body). Int: What motivated you to do that? Res: I have many friends and I like people so much. We engage in a conversation and it through such a conversation that we learn from each other. Q14_ Int: Have you met new people through the clinic? Res: They are there but as you know people from this place are mobile; you see someone comes from the islands and when you meet them, you ask them when they started taking ART and they say that they started this month and how did the drug affect you and you encourage them that I was also affected like that but now you can see how I am. Int: Have you joined any support groups? Res: I have totally nothing. Int: lwaki? Res: I have never come across one. Int: There totally no self help group at the clinic? Res: For us, we have not got one but if I was still accessing from Grade A, I would have joined one because the friends I left there, some have but for me, I stopped going there when I was changed and I remained there like that. When I meet those friends, they tell me that they are like this and that. The problem we have though is CD4 to the extent that I have spent a year without testing for CD4 count. I do not know my strength now apart from taking weight measurements, diagnosing other illnesses like blood pressure but CD4 count is not doing us a service because we were told that the contract for the people taking it had expired. He asked how the situation is at Virus clinic. Int: I think going to virus, you have to first go to Grade A and they advise you on where to go. Res: We were told at Grade A they are there but it is for a lot of money that we do not have. Attitudes in your wider community Disclosure Q15_ Int: How does the community as a whole “think & talk” about HIV? Res: This place, the way you see it, majority of the people are infected; this I cannot tell lies and everyone is their own. They are sick and you cannot know and you just find them at the health center or you see them coming from there and you say that so and so is also sick who has been talking ill of the infected people. So we live like that; everyone on his/her own. Int: What are those strong hurting words that they say? Res: People are always saying that so and so is sick. That person you are seeing is about to collapse but tomorrow, you find them the other side picking drugs and you ask yourself why the person was talking ill of others. You will laugh at a person yet it is not good to do so if you are not sick but you should know that your child or your relative will fall sick and go to the clinic. These days are not the best because you cannot find ten families without someone infected and if it is not in your family, at least among your relatives, the illness is there. Q 16_ Int: Do you think that acceptance levels in the community are rising? Res: People have accepted but this is individually because they go to have an HIV test. Someone walks to the hospital to seek treatment. So in the villages, there are sensitization meetings that there are rumors in the villages so everyone is suspicious of the other that if they can talk about me before they see me go to get drugs, what will happen when they see me. Everyone is counseled and they come back and live well, people see someone who has been looking badly starting to look healthy and they say that so and so started counseling because he is on ARVs so you also go and they test you and start on the drugs and if you are not infected, God will help you from there. Int: Does this mean that if someone is known to be infected with HIV, the community discriminates them? Res: It is impossible to discriminate others yet they are also sick. They do not discriminate any person apart from rumor mongering which is expected in the village. You find people gathered there and when you pass, they start saying that that one is almost dying yet they are also infected are the only problems with black people of this place. So they should finish their problems if someone is infected, they get to know and he/she stops talking about other people and resort to doing their work as well as getting their drugs and when they become okay and stop none business. If I had authority like a politician, I would have arrested all the people that back bite their colleagues. Because they are the ones who bring bad thoughts to their colleagues because of frequent back biting and people hate themselves. There are people who are bad hearted; don’t you hear the people who commit suicide because they hate themselves but if you decide to get rid of the negative thoughts, you live well. If someone talks about you, you just ignore it and you leave them because it is God who knows but it is surprising because when it has not happened to you, it happens to him. You here that so and son’s child is dead yet he has been laughing at you. Q17_Int: Is stigma still an issue? Res: Stigma in tribes or illness? Int: This is as far as the illness is concerned. Res: That is no longer an issue maybe it is there in the village far away. I do not know but in our village here, it is no longer an issue. Int: Why? Res: This is because everyone knows that the illness came and it came and everybody is committed to seeking treatment because some used to fear the drugs so much but now, they go and test and start on ARVs. However, for me, I encourage them to reduce on moving out with women and stop drinking alcohol because you can be infected with malaria and when you involve yourself with women, you get another virus for headache so when these combine, you are grossly affected. So it is good to stay with only your virus alone and when you get a partner because nature cannot be frustrated and you use condoms. Q 18_ Int: Does this influence how you perceive yourself? Res: That is still very good because we are no longer discriminated like you were thinking that so and so, I will not drink on his cup nor eat on his plate so that is why you see that we behave the same and we are equal we no longer have problems. The problems we still have are those of swallowing drugs and taking care of ourselves with the help of the government availing us drugs as we take care of ourselves because if you forget the drugs, you know that your energy reduces. Q20_Int: Initially, perhaps you disclosed to some people but not to others. Has that changed since then? Res: There are many and I cannot say anything, I have told you that there is a lot of rumor mongering. Now I tell them that they will treat me? It is my doctor who knows my secret. He is the one who knows my problem so I do not see any reason why because, I got into this situation alone and why should I spread it among other people that I got this and that? It will remain with my doctor because he is the one who knows my problem. When I fall sick, he is the one who treats me. Maybe also my treatment supporter is the one who knows. Int: Does that mean that they are the only ones you told and nobody else? Res: Apart from those I meet at the clinic are the ones that know my status but in this village, aaa! I cannot tell them I remain there like a king and I do not spend time sympathizing with myself that everywhere I pass, I am sick and I am going to die. Who sent you for the illness? Int: Why didn’t you tell others? Res: What stops me from telling other people is the rumor mongering; one person knows and the second knows and when it reaches to the third person, the whole village knows and you find that even those who are sick and at home they are taking about your secret. So when you go to one corner and you find they are talking about you, you start getting worried and you lose weight and you start developing high blood pressure but if you know that you kept your secret well and it is your doctor and your treatment supporter who know your status, no one else should know. Emotions: Diagnosis to Now Changes and Adjustment Q21 _ Int: Overall, then, what would you say has changed between how you felt / thought then and how you feel/ think now? Res: What has changed in the way I was feeling is because the other time I was worried but now, I am no longer worried. This has been an important thing in strengthening me because worrying is a dangerous thing and it is the one that has killed many people when they are told that they are infected with HIV. When you get the virus and start thinking and worrying, and refuse eating food and bringing other people closer to you because you think that you are going to die and you detach yourself from everything and go as the world dictates, and you look at yourself as okay. Now for me, I walk around and see my colleagues and say aaaah! This one is too sick and for me I am okay because I have strength and I am on my thing (ARVs). Int: Does this mean you feel good now? Res: I feel very well now. Int: What has brought about that feeling? Res: Not worrying like I have told you is the most important factor because we get our drugs and treatment. If I get treatment and I see that I am responding well, I do not get worried because I know that the drugs are there, food is there apart from the word finances is the one that worries me a bit nothing else. Maybe my children also give me sleepless nights. I sometimes think about them there is nothing I have left them with, I have not built for them a house so this hurts me but if I can get some money and buy a plot and build for my children a house, I will be done. All my worries will be settled and even if I die, the government will bury me but when I have left my children with something but to leave them wondering around will be a problem and this gives me sleepless nights and say that if I had not contracted this illness, I would have done many things for my children. Int: But you will still fulfill all your goals because life is still abundant Res: Continue praying for me as you work tirelessly to help us as all our hope is in you (Researchers) Q 24 _ Int: What do you do when you feel down/sad/depressed/scared/angry? Res: Feeling discouraged is what I have told you concerning getting scared, stop having bad thoughts and being hopeless. If you have bad thoughts, do not be discouraged, do not fear but remain strong like a trained soldier going for a war and bullets are allover but he cannot retreat. So that is how we should be at least I for one because I do not know how my colleagues think but for me on my own I move forward with life. Int: Everything is moving on well? Res: Thing are moving on well and I think if god helps me, I want to pray to God and get some money and buy a plot of land for my children and that is all. Int: But don’t you sometimes feel sad? Res: I do not have self-pity because no one sent me for the illness. It is God who decides and for that matter, I cannot pity myself and even if I did so, I am already in this situation – nothing to save. Q 25 _Int: What motivates you to keep going forward? Res: Trying to do something; when I finish taking my thing you have understood, I rest for about ten minutes and start doing my work when it has settled in the stomach and also after doing the extras like taking tea, I go and do my work and at this time, do you see that I am sick? Do you see any scar on me? Int: No sir Res: My skin is very fine. Okay what are you looking for now? Can anyone say that I am sick, how do you say that when you find me clad in suits on the road, you might think that I have just returned from America because I do not show anything like an illness on me? I show that every time, I am very fine and for me, I pity the people I see drunk yet you know that they are on ARVs. I sometimes feel like beating them but you do not even have where to beat and simply say that look at this person who will tomorrow tell lies that the government has not helped them with treatment. They know what they are going through but even the little money that would have helped them, they spend it on alcohol instead of buying say a cup of milk or tea, eat good sauce but spend it on acid – alcohol yet alcohol does not do well with ARVs this no one should ever lie to you. Even the people who drink alcohol do it illegally but if they would know and stop taking it, they can be relieved of health problems. I want to inform you that in all places I have gone to, when you see a person who is skinny, that person is okay but when you see a fat person all looking healthy, that one is on ARVs and is infected. Int: Why? Res: When you swallow ARVs correctly, you become healthy and look like someone that has never fallen sick. Int: I did not know that… Res: If you did not know it, go to town and see women who are looking healthy and with big hips, those are sick and when you say that that one is healthy, I laugh at you. You got down to TASO and see people coming out with their bags. You cannot say that they are sick. Apart from that one who has just started taking the drugs or someone in a wheel chair is the one that is sick. Int: Now, what brings about that? Res: Drugs (ARVs) and counseling because when you are tested positive, you start on counseling to stop worrying, you will do like this and also remembering the time for taking ARVs and you live normally. Q26_ Int: What is your religion? Res: I am a Protestant. Int: Do you go to church? Res: I go to church most of the time especially when I finish my work. There is a time when I had a problem with my eyes as I was not seeing well, I sacrificed some money and bought spectacles and they were stolen and these days, I got a friend I sent to Nsambya hospital and brought me others but I make sure that I read the Bible and I have it. There are very many thieves in this area. They come and even steal my religion books in my house. I lost them but I said that the person who stole them is the one who knows. I pray so much and at the church, I am well known and when I spend about two weeks without going to church, the church leader has to ask where I am as he no longer sees me. I am I sick and I say that I had travelled. I was in Kampala or I have not been feeling well and I explain to him why without telling lies because God is never deceived. Int: Has your faith become stronger or gone down? Res: In religion? Int: In faith/religion Res: My faith has increased because if you do not believe that God is there, I would not be there because he is the one who talked to me to go and seek treatment, test and get drugs and I see that I am still alive and my friends who refused, we buried them long time ago. The ones I know we used to move together and majority of them are also on treatment. So why should I not thank God and when I get 100 shillings, I take off 50 shillings and take it to church to thank the Lord for the life he has given me. Int: But now, has this increased because you are sick? Res: Even before, I was religious and I did not back slide after knowing but I moved forward. Ever since I was baptized, I was 12 years old; I went through catechism and was confirmed. I have never changed and what stopped me from marrying is one thing that I have never gotten a woman of my religion because I do not want disagreements in the house. I wanted to get a woman of my faith but everyone I would meet would be a Muslim or Catholic yet I am a protestant and want someone we believe the same so that when I say get the Bible and we go or read for me this verse and I also read the other. That is what I want in our house. Int: Have you received support from your church? Res: There is no support from the church because I have never reported that I am sick. I told you that I know myself alone and my doctor and at the church, I go like any other healthy person. However, many are there and when you reach at the church, you see those that you meet at the health center but those remain at the clinic. Int: Now, how has your faith influenced the way you think about your illness? Res: It has changed! Int: How? Res: It has changed that every time you read a verse in the Bible or when I pray a lot, I feel some change and feel strong. I also have my songs that are played over the radio those of Judith Babirye (Renown Gospel artist) for gospel also strengthen me and I like them so much. Religion is a very important thing because it has a way it helps you to live, gives you strength so I pity someone who is not religious. That is why you see people who are not religious, use intoxicants and do all sorts of evil things. Can I find you on the way and I abuse you when I have faith? Int: How has your illness influenced your faith? Res: Changing how? That I have faith, I still have faith like I started because there is someone who can say that you see I am sick so God is not there. There is nothing that happens that God does not know even if you are there, what God planned for you, that is it and I want to let you know that this illness, God prepared for everyone because I see them at the clinic, a couple is living together, they have had children but the wife is infected and on testing the husband, he is not infected. What brings about this? It is God that plans. If God decides, I cannot deny him. It like now you hear that Gadhafi said he would die from his country and it is where he died from. If he had run away, he would have died from another country but he lived what had said and I also say I will sick treatment until God will take me from this world. Q 27_Int: In which way would you say your illness has changed you, your outlook on life? Res: I see life now and when I had just started taking ARVs, I had almost given up because I was seeing life going. I had all changed and my nails had all darkened, my feet turned black and I wondered what was going on and I went to my doctor and explained to him what was happening to me and he told me not to fear because that is how the drug behaves in the body. It first turns the skin as it is getting used in the blood. So after it is used, you will become fine and that is what happened to me and I became fine. Int: Now, how do you take life? Res: I see that I have life and it is going forward. Int: You see it as good. Res: Yes Q28_ Int: Have your personal relationships changed since you were diagnosed? Res: I did not change because we still relate like we used to do. Int: You have not even told people at home? Res: Those in our village? There is only one who knows but also keeps it a secret. It is my sister and she is the one who advised me to seek treatment when I told her but I told her not to tell mzee (old man) because the old people sometimes have high blood pressure and worry so much. Int: But, what about your relationship with friends? Res: I have many friends and all you see, we are not related but everyone comes here and as we talk, many people are about to come here. They know that I have pumpkins you find many people here. Q29_ Int: What advice would you give to someone who has just been diagnosed with HIV? Res: I would advise them to go and start on the drugs and counseling. They should be counseled and start on the drugs and if they diagnose him/her that they should start with septrin because there is nothing else to do. Int: That is it. Is that the only advice you can give? Res: That is the advice I can give them so that they take care of their life because majority of the people my brother who are infected go to the offices but they look fine and also the doctors who treat us, there are some who are infected but you see them explaining that most of the doctors are also infected but we do government work normally and we treat you and we also treat ourselves and keep ourselves healthy. Q30_Int: Do you think that individuals should disclose their HIV status before entering a new relationship? Res: You can say it and explain to your friend your status that I am like this and if he/she accepts you, you go but when they refuse it is okay because you can also see how you usually behave. Int: What does this help? Res: It is helpful because it is said that what you know, saves a lot. It helps someone to come when they are aware of everything other than coming ignorant of what is going on. Time will come and you start regretting saying that I wish you had told me; I wish I had known. I do not want to know. I want someone to come when they are fully aware of what is going on. Q31 _ Int: Do you think the younger generation should be taught about how to avoid becoming HIV positive? Res: It requires counseling them. Int: Is there anything else rather than counseling? Res: And also encouraging them because for us when we meet them, we advise them that if you involve yourself with women or men you the youth today are disrespectful. When you tell them, they despise you and start calling you a liar saying that how come for you do not fall sick yet you have been a socialite yet they do not know what I am going through. So for me, I do not advise the youth because they are disrespectful. Int: Who should teach them? Res: They require sensitization from the government and also in schools for the school going children, the government should bring sensitization campaigns but like for you when you go to the village and say something, people start questioning where you studied from. Where did he get what he is telling us? So it requires people who are educated. Int: What about at home? Res: Children should also be taught from home but majority of the people fear telling their children about this subject because they see it as not appropriate but for me, I see it as appropriate. Q32_Int: Do you think that your experience of life has an impact on how well you cope now? Res: They have helped me. Int: How? Res: I have already told you that not to get worried, eating well, swallowing my tablets and I get used to the situation and forget about the worldly things. Int: All this stems from the way you were brought up? Res: How I was raised and what I went through coupled with discipline have helped me because if you are not disciplined, there is no one who will advise you. Now who will offer advice to you when you are ill mannered and the things they tell you to counsel people with discipline but when you go and start abusing the health workers, even if you are educated, you are nothing without discipline. Q33_Int: What would you say are the major achievements on your journey of adjusting to living with HIV? Res: Swallowing well the drugs is the achievement I see and trusting and believing in the Lord and forgetting about worries, I have already told you this because if you do not do way with bad thoughts, you are gone. Int: What would you say are the disappointments on your journey of adjusting to living with HIV? Res: Things to do with finances because this had gone down as compared to how I used to do things, I sometimes do not do a lot, that is my journey I have told you that I used to be on move getting some money, I no longer move I remain near home. Q34_Int: What would increase your quality of life the most? Res: Finances; if I have got something, you know that when you have some money, you have built your house, even you live longer. If I have this, I can live longer because I become strong; firstly, I have a house, secondly, I have drugs the government has given me. If the drugs are still available, I will be strong without any worry. That is what I have said; not getting worried is what calms down this illness. SERVICES Q35 _ Int: Since when have you been taking medication? Res: If you add septrin, I have spent about three years on drugs. Int: When did you begin taking septrin? Res: I started taking septrin in November 2008. Int: What about ARVs? Res: nazitandiika ogwo oguwedde Int: m 2010 oba 2009? Res: ee 2009 Q36_ Int: What is the process / procedure of accessing medication? Res: Knowing my appointment date and I have my form and when I go to the clinic, they put the date on the form and every day when you are swallowing your drugs, I have to tick on the form and ahead, there is a date and you know that that is when I should be going back. So I monitor how well I have swallowed the drugs and reached the next date, I go and get my drugs and I have to go with the balance I still have and the health workers count them and they know what I have swallowed and what is remaining and later they give me a letter telling me how to swallow and then the next refill date depending on the tablets you have and what you will have got. Int: Now, when you reach the health center, what procedures do you go through until you get your drugs? Res: At our health center, it is not hard. Our ART day is well known and the doctors come knowing that those who have come for ARVs are here. So when you reach, there is a weighing scale where you go and weigh yourself and if you cannot see well, your colleagues help you or the doctor comes and weighs you and you know your weight. After this, you sit on the bench and start entering in the doctor’s room according to the order you came in. if you go there early, you leave early and vice versa. There is order and discipline. One cannot just come that he is late going to work and he passes those he find there. This cannot happen. If you want to go very fast, you have to come early but if you call the health workers and tell them to keep for you your drugs for, you will come at such and such time, they can keep for you. Int: When you make a phone call? Res: Yes the doctors have our telephone contacts. Where did you get my contact from? Q 37_Int: Are the procedures good or bad? Res: The system of first come first serve is very good and we are happy with it. You cannot come in a car and just bypass me because I came on foot because we are all sick. Is there a sick person who is better than the other? He asked. It is like a dead person cannot be better than another one because they are all dead. Q 38_Int: Are there any specific requirements for receiving medication? Res: Going to the clinic? May be transport. Int: There is no requirement when you reach? Res: Maybe buying a book only and only. Q39_Int: What do you think about the cost of accessing care? Res: Okay for me spending, it is God who knows because for me, I do not have money. Int: But do you require money to go there? Res: It is required. Int: What is it for? Res: Sometimes you reach there like when we were still going to Entebbe and you would join a queue and get a cup of tea and a bun (form of bread) and eat but you can leave this place and find people yawning or walk to come here (clinic) and transport is about 1000 shilling to and fro. Int: Can you afford the cost of accessing care? Res: I do not pay for anything. Int: What about paying for CD4? Res: I do not have, that is why I stopped because I do not have money to test for CD4 id if I had, I would have gone already and I sent the doctor to inquire for me and he told me that it was 30,000 shilling s required but I do not have it. Int: What about septrin, do you buy it? Res: We get that free of charge. Q 40+41 _ Int: How important is your CD4 count to you? Res: It is very important to me to know how I am fairing in life because this is what brings bad thoughts. I can illustrate this with flu; if you get flue and nothing is coming, you know it is really bad but if something is coming out, you know you are getting better so even CD4 if you know that your CD4 count is this much, you know that you are improving because I started with 40 but now I am 45 and another time you have 50, you get to know that the drugs are now working well because if CD4 count is increasing, life is also improving. Int: What was your CD4 count initially? Res: I do not still remember how many because it is now three years but they are in the books of the government. Q42 _ Int: How do you ensure you won’t forget to take the drugs mornings & evenings? Res: What I do is that I have my watch and a radio. I swallow at 8 in the morning and 8 in the evening respectively. That is why you see that I do not rioter around and when I have travelled, I move with my drugs and where the time finds me, I buy a bottle of water and something to eat and I swallow my drugs. Int: So you cannot forget? Res: I can nto forget. Int: What do you do if you forget to take them? Res: For my case, I have never forgotten I cannot lie about this that I have ever missed because how do I miss? I have told you that I do not drink alcohol, secondly I do not frequently move away so how do I forget. I cannot forget and this has never happened. Q 43 _ Int: Do you always have enough food to take with the medication? Res: I make sure that I first eat something and then swallow the drugs. In the morning, a cup of tea and food is there, I cook my lunch and eat well and 8 in the evening comes when supper is ready and I first eat to swallow the drugs even after taking a bath and then sleep. Int: You always have food? Res: It is available and even if it is not there, I make sure that I try all means and see that I get it. Q45 _ Int: How do you feel about having to take medicine every day for the rest of your life? Res: I got used now; I know that I will die when I am still taking them may be if God decides and our researchers get the drug that will cure the disease completely but now I got used and know that I will die while swallowing because I do not hope to stop in future unless you people who promise us and encourage us but for me, they teach us that we have to swallow the drugs until we leave this world. Int: And you also have to do that? Res: What I have to do is I cannot say that in such and such a month, I will stop taking the medication I do not have that authority yet. Counselling Q46_ Int: Do you get counselling at the clinic/health centre? Res: Yes we are counselled every month. Int: Every month once? Res: Once every month; Every time you go there, the doctor counsels you and explains to you and asks you how you are faring, how you are swallowing the drugs and if there is any problem with the drugs. Asks you whether you are eating well and he diagnoses you of every illness. Q 47_Int: Is your counselling need related to matters medical, emotional, behavioural, or any other area? Res: It is about treatment seeking and having good thoughts all combined. Q 48 _ Int: Is this counselling useful? Res: Counselling is every important to me because if I had not been taken counselling, I would not have gone for treatment and I would not have kept myself safe. It is like a child waking up and going to school and they teach you something and you get it so what they told me at first, I still remember them and every time I go there, they tell me another one basing on what they told me at first but now I am like a professor for the three years they have been counselling me, if I was studying a degree, I would be having two so now I can also teach counselling a doctor who has just joined the profession. Int: Now, do you understand it very well? Res: I understand it very well. Int: What are you told during counselling? Res: They encourage us to be faithful, to swallow our drugs well and reducing on alcohol intake. Q 49_Int: Which other type of support / service do you think would be useful to you? Res: The other form of support would be financial but I do not expect this. I only expect support in monetary terms and nothing else because when I get money, it will be a big boost it will give me courage to work is what I want and see my life moving forward and I also get hope that I will be cured. Q 50 _ Int: What are the benefits of the current service provision? Res: I benefit from this service delivery. Int: How? Res: Basing on the mode of delivery and the way they have taught me, and the period I have spent ever since I went there, I am no longer the same, I have moved from that step I am on another step and alive. This is because the virus does not die because if it was dying, mine would have died already but I accepted that it came and indeed it came. Int: Do you appreciate the service? Res: I appreciate the way I am served at the clinic. Int: What are the good things that you have experienced at the health center? Res: I have never received anything Int: Something good? Res: It is the drugs maybe but nothing else. Int: What is it that needs to be improved at the clinic? Res: There is nothing else I can say because we are served very well here but other places, I do not know but for my case, the service is good. Int: You appreciate whatever is done there? Res: Meaning yes Q 51 _ Int: Is there anything that you would like to add….that we missed, that we didn’t ask about, but that is important to you? Res: Important to me; may be helping us to tell our leaders to help us with another form of treatment beyond ARVs is what I can ask you. Int: You mean more specialized treatment or what? Res: I mean the medication that cures the virus and other things like helping us. Sometimes you can be having a problem and the doctors come and help you but here at our clinic, there is nothing they give us. Int: How do they help you? Res: Now like at TASO there is a way they help; okay the organization has a way it helps with things like you know how it was before, they used to give patients some envelopes (money) to help them with buying essentials like milk like that. Int: Thank you very much sir for your time and the good information you have given me as usual. Like the way we do our things, I have come with a kilo of soap have it. We are very grateful. Res: Thank you so much for the soap. It is very expensive now it about 4000 shillings. Thank the management of the organization for me. Int: Stay well also and we shall keep in touch. Res: Okay please.