Nakiyemba ppt parallel 2 1

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Factors facilitating or constraining Adherence to Antiretroviral Therapy Among adults in Uganda: a pre-intervention study   Alice Nakiyemba, Dorothy Akurut, Richard Kwasa, Thomas Oyabba Busoga University-Uganda Department of Humanities A presentation to the eighth Annual Global Development Conference January 12-19, 2007 Beijing, China

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Background to study PRDUC training programme (WHO + ASSR)

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Patients' waiting area at Jinja Hospital.

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The pharmacy window and waiting area, One of the three consulting rooms for doctors at the Nile Treatment Centre. Nile Treatment Centre.

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The general objective To identify factors that facilitate or constrain adherence to ART among adults in Uganda and possible interventions at one public facility and one private facility Specific objectives Determine patients’ knowledge, attitudes and perceptions on the use of ARVs. Establish patients’ information sources and the communication channels more acceptable to them. Determine beliefs and practices that affect adherence to ARVs. Establish the type of services delivered to patients receiving ARVs in selected sites in Uganda. Establish the kinds of social support given to patients taking ARVs. Gather information from ARV users, support groups and health workers on improving ARV adherence which can be useful for planning an intervention.

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Setting Public facility: Jinja Regional Referral Hospital (public facility) Private facility: Nile Treatment Centre Selection criteria One public and one private facility providing HAART Relatively research naïve sites Study period May and June 2005.

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Study population Patients 18 years or older receiving ART Health workers Community members

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Sampling strategy Systematic sample of every third patient attending facility on day of field work When a patient did not want to participate, the next patient was selected

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Data collection methods Quantitative Pharmacy records review Qualitative focus group discussions, ethnographic observation, key informant interviews, semi-structured interviews, exit interviews

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Results The result of the study came up with the following as emerging themes; cost in terms of user fees, transport and other overhead costs had a very large impact on adherence and is likely to affect adherence even for those who try to do so. Although all the respondents were receiving medicines free of charge, additional costs incurred through travel to the facilities and user charges at the private facility have implications for adherence, as indicated in the following quotes: “Sir, I came from very far. Over fifty kilometres from here. Before I come to the hospital I have to plan the money for journey fare to the clinic. In fact my extra drugs got finished yesterday.” (Male ARV user, JRRH) “I have many people in the village. They are dying because they don’t have money to transport themselves to the hospital. You need to have this money monthly. Like me, from the village where I come from, getting up to this place costs Ushs 15 000 (US$8.50). To and fro is Ushs 30 000 (US$17), which is a lot of money…Right now only Lira Referral Hospital gives ARVs, and that is 130 km from our place (Kyoga). Very far!” (ART user)

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“Some people have failed to report to the clinic on time because they failed to get transport to reach the clinic. Some people come from the islands, and they will tell you that they did not get money to cross the waters and they will tell you that is why they did not come on time. And when you are told that, you cannot do much but to hope that when the next visit comes, he can afford to come on time.” (Health worker) “Yes it is a sacrifice. I am considering going to a government hospital which is completely free.” (Male, semi-structured interview, NTC) “I can no longer pay school fees for my children because I am burdened by extra costs of maintaining my health.” (Male ARV user, FGD) “People coming from very far will always have an extra cost especially where barriers are included. For instance, some patients have to cross waters to come to the centre. You cannot keep blaming them for defaulting. It is really hard.” (Doctor, NTC)

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Hunger was pointed out as a threat to future success of ART in Uganda because patients on ART can not afford to feed themselves as their body metabolism improve and demand more food. “Some patients have expressed lack of food as a reason for not wanting to swallow the life-saving drugs. In fact we have one woman who has declined her life-saving drugs because she does not have enough food to feed herself.” (Doctor, NTC) Another said: “I missed on Sunday because I could not find what to eat and yet I had to eat first before taking the tablets.” (Female ARV user, SSI) Daily Monitor October 19, 2005 100 hungry people stop ARV Treatment This drug enhances one’s appetite and many AIDS patients on ARVs don’t have the capacity to get enough food to match their appetite. They have therefore decided to do away with the drugs. Unless the Government and the World Food Programme come in and help, a number of patients on ARV treatment in the district will soon die. (LC5 Chairman Rakai District, Mr Vincent Semakula) “I want to eat all the time and fear the hunger will eat into my stomach since I have ulcers already. Sometimes I have to wake up in the night to eat food. This is a difficult situation for me.” (Male ARV user, JRRH)

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Though stigma and disclosure are not generally a big problem in Uganda, they still exist at local levels and sometimes a problem to PLWHA. “Disclosing status is not easy, especially to those who don’t know you. They talk about you in small groups and when you join them they pretend they don’t mind. Yet they have been discussing you. We are OK disclosing to fellow PLWHIV, who understand our problem.” (PLWHIV, female FGD) “At first I got so scared to tell people because of the stigma but ever since I started on ARVs they have began to wonder what has happened. In fact I hear some say why they don’t inject her and put her to rest otherwise she is going to finish everybody. Because of these I remained alone. So I remained with only a few of my family members who I cooperate with. The counsellor advised us to tell our family members about it. In fact these helped me so much when I told them I became free about my status and up to now I have a lot of courage and strength with the ARVs.” (ARV user, SSI) “I cannot take my drugs when people are seeing. I always go and hide and take them. Otherwise, people start whispering about you all the time.” (ARV user, female FGD) “My wife abandoned me the moment I disclosed my status to her. She left me with the children. And to make it worse, my own family said I deserved harsh treatment because I infected my wife with the deadly virus.” (Male, semi-structured interview)

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Participants in this study where worried about the dependency on drugs and treatment fatigue that they had to adopt in trying to leave longer. “I don’t think it is realistic to take drugs or treat a disease until you die. Treatment should be for a limited time and the disease is treated and you don’t have it any more. So, now we have nothing to do. It is like a failure.” (ARV user, female FGD) ARV users also questioned whether they were actually receiving the best treatment currently available: “We hear rumours that there are some drugs which came out and cure. But they are still in America. So I just request the Government if it can at least bring those drugs so that we are helped and get cured.” (ARV user, female FGD) During the study some participants also worried about treatment fatigue and some were found to be giving themselves a drug holidays when they felt like. This would definitely affect adherence and viral suppression as more patients become resistant to the first line drugs leading to switching regimens. Ideally it would become impossible to scale up ART on second line regimen.

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Social support was seen as a good motivator, which can boost adherence but can turn out to be a negative impact where it is not adequately given. Participants in the FGDs stressed the importance of their children in providing treatment support: “My children after seeing the state I was in and after getting ARVs, I called them and told them about my state. They got encouraged and as a result they buy me passion fruits and sugar because they know the drugs I am taking are so strong. I even wrote my file number in TASO on the wall and told them that just in case I am badly off they can go to TASO and get me help. My children know very well that my drug needs to drink enough and to eat on time. One thing that motivated me to tell them is because I thought I could be so weak to collect my refill of the drugs (ARVs). They even know the name of my counsellor.” (ARV user, mother of five). However, not all children are equally supportive, as shown in the following complaint: “It is only my young children who give help. They cook for me and bring me whatever I send them. But my elder children abandoned me yet I told them about my status.” (Female ARV user, SSI) Children are not the only source of support. ARV users also feel greatly supported by people from the TASO clinic. Meeting other ARV users who are equally or even worse affected than they are encouraged them to start and continue ART. “One thing that strengthened me was the people I met at the TASO clinic. There were people who were so badly off. So I asked myself: if such people still have the hope of getting better then what about me. I saw those with bad rashes, others almost losing their eyes.” (Male, group discussion)

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Side-effects Some respondents experienced adverse effects that discouraged them from taking the medicines. In particular, people complained about nausea, skin rash and dizziness. Participants also reported having “weird” dreams that made them frightened to take the medicines. “You fear to take the drug because of the weird dreams. You can see dead bodies and you are walking with them. You are in races struggling and many other struggles. It frustrates and soon you get fed up.” (ARV user, female FGD) The physical and social impact of side-effects is also a concern for ARV users and can have an adverse effect on adherence. As one man said: “Feeling a lot of heat in the body, especially after taking the drug, and excess sweating makes one embarrassed in public. So, you feel like postponing the drug to a later time when you are not relating with people.” (Male ARV user, JRRH)

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Sustainability .Moreover, given that medicines have to be taken for life, participants were anxious to know what would happen if the free drugs phase out. They wondered whether the Government would take on providing the drugs. “We are grateful for the government for bringing medicine to the people, but we hear it is only for five years. Whenever I take these drugs, I am wondering whether in the next five years I will still have them free. Actually, I get disturbed by that”. ( PLWHA, male FGD ) Clearly, people are anxious that the medicines will not be available in the long term, which might affect their future adherence.

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Quality of care issues Sixteen of 26 users in the public facility felt the services offered were good, eight of 26 felt it was fair. While only two out of 20 felt services were poor. In contrast all 20 participants interviewed at the private facility felt the services were very good. With the exceptional of two users at the public facility, participants felt they were listened to by the service providers. They trusted the health workers and acknowledged that they had privacy in both facilities except for one person at the public facility who disagreed.

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Regularly waiting time, participants at the public facility waited 5 hours on average compared to 1 hour at the private facility. Long waiting times were a demotivating factor for these already sick patients. It was also realised that at the private facility, services were quite first and every participant had adequate time to discuss with the health providers. At the public facility, people had to queue longer hours and the time with the health worker was very limited. This could be the reason why participants reported inadequate counselling at the public facility.

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The private facility had a very welcoming atmosphere with no long waits and worked six days a week.

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Structural/Health facility issues -The public facility was facing difficulties in that the scaling up of ART came in without an increase in personnel to cater for increasing numbers. Health workers were visibly over worked as they struggled to contain the crowd on a clinic day.

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-There were no adherence counsellors at the public health facility while the private facility had two adherence counsellors. The public facility sometimes lacked enough room to accommodate patients for counselling and to discuss personal issues and therefore nurses took them to any free space available this compromised confidentiality. The private facility was very organized, with comfortable seating, less waiting time and everybody was attended to. Adherence counselling was a must and spot checking from various stations.

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At the private facility all recommended tests for HIV management were done within the centre while the public facility had to send out some of their samples for CD4 and viral load testing. This implied that people who were very sick had to wait at least two weeks before they could be put on therapy. This was another limiting factor at the public facility.

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Conclusions The strength of this study lies in the qualitative data, in which we present views about adherence by reporting statements from the study participants themselves. This qualitative data supports the quantitative findings reported in other studies, such as the Tanzania and Botswana studies.

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We anticipate that as ART is rolled out in Uganda, optimal adherence will be difficult to achieve. The costs involved in terms of transport, waiting time, and other over-head costs are already impeding adherence and some patients are dropping out of treatment as a result.

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Hunger is usually a major concern among those who have just started therapy. One organization reported that 100 patients were threatening to stop taking their ARVs because of increased food needs which they could not meet. This is a serious threat to adherence. Unless programmes are designed to provide food assistance in the first months of ART, optimal adherence is going to be difficult to achieve.

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In this study, it was reported that the level of infrastructure for service provision and the quality of care provided were better at the private ART-providing facility than at the public facility. Structural problems at the public facility included overcrowding at the ART clinic, lack of training for health workers and the inability of the few that are trained to cope with the growing number of people on ART.

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Unless these kind of structural issues are addressed by the Government as ART is rolled out in Uganda, it will be difficult to ensure adherence. Other challenges that will also have to be addressed include the lack of social support, stigma and discrimination, and treatment fatigue.

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Uganda has made a good start in scaling up ART and this is widely appreciated. However Uganda appears to be moving very quickly to scale up access to ARVs without addressing critical issues such as the problem of additional costs, hunger and excessive time spent at the facilities, as well as the need for pill counting, training of adherence counsellors, community sensitization and home-based care services. Efforts to minimize constraints and improve adherence levels will require the efforts of the community, health workers and patients as well as Government commitment to resolve key structural problems.