Challenges to treatment adherence prior to the social support program.

We asked patients about the challenges to adherence they faced when they received outpatient TB treatment prior to their participation in the social support program. Major challenges were related to required daily visits to health facilities for directly observed treatment.

Most patients reported being too weak to walk and reported side effects from medicine such as nausea, dizziness, pain in joints, lack of memory and sleep disorders that prevented them from being able to visit the HF daily. All patients interviewed relied on public transportation to get to a HF. It was challenging for patients to walk to a bus stop, wait for a bus, ride in a bus or a minivan full of people and then repeat the process going back home. One patient illustrated the challenges related to getting to health facilities using public transportation while having side effects from taking medicine:

From the very beginning of treatment, I started having nausea and I was very sleepy. As I kept taking pills, my condition worsened. … It was a long way to a health facility. I had to wait for the minivan. I felt dizzy from the crowd in the minivan too. I felt weak and almost fainted from these pills… Sometimes I missed my stops when I was riding a minivan. I did not feel well. …. There were a few days when I could not get to health facility because I could not make myself get up and go. This was because of the side effects from pills. These are strong pills.

(male patient, Odesa)

The amount of time required for transportation and waiting in lines at the HF presented challenges for the majority of the patients interviewed. Most patients spent anywhere from two to six hours daily traveling to the health facility, waiting in lines and returning home. As one patient stated, it took at least half of the day for her to do this daily.

If I don’t come in the morning, then I need to wait, maybe the nurse is busy with handing out medicine; it is inconvenient—you wait at the bus stop too, half a day goes by. It is hard.

(female patient, Dnipro)

Those patients who spent two hours daily also felt that it was taking a lot of time they could use for something else. This patient described his challenges for daily visits:

This (visits to HF) takes time. In my case, I have to walk to a tram stop for 15 minutes, then it takes time to get there (to HF), to take pills, to come back. At the end it takes about two hours. Time goes fast. However, there are other things in life that I have to do and places to go. I don’t want to spend so much time for HF visits every day.

(male patient, Odesa)

Patients had to pay transportation expenses to go to the HF and back daily. It was from two to four hryvnia (USD 0.08–0.16) one way but since most patients were unemployed, they could not afford such an expense. One patient illustrated how difficult it was to pay for transportation expenses by saying:

If someone is unemployed and is the only bread winner in the family… how are they supposed to live if there are no money? He can’t spend any money for a van or tram here and there. All he has is 5 hryvnia to buy some bread.

(male patient, Odesa)

Patients reported dissatisfaction with health facility hours of operation. Health facilities administered treatment from 9 am to 5 pm, so those few patients who worked had to be there during working hours. This patient illustrated the inconvenience of the HF working hours:

I can go to the health facility either in the evenings or before 9 am, before work. The health facility opens only at 9 am. And it is not convenient for me to go there during lunch time. It takes one hour to get there and then another hour for the way back.

(male patient, Odesa)

In addition to the time spent waiting in line, long queues in HFs had some patients worried about the possibility of getting infected with another TB strain, leading to a desire for them to limit their visits to the HFs. While some HFs provided masks, others required patients to pay or bring their own, which patients could not afford. One patient expressed her fear of getting infected in a HF by stating:

People are very different. One can’t tell by looking at them. They sometimes cough with blood. It’s horrible. If you have a passive form, you fear that you get infected with another form… This is scary, I have two children.

(female patient, Dnipro)

Stigma was identified as one of the biggest challenges to patient adherence. All interviewed patients reported that they did not want to be seen in a TB health facility by their friends and acquaintances. Patients were hiding their disease from people, sometimes even relatives. Usually, there were only one or two TB facilities in a city. Patients said that sometimes people without TB visit these facilities for diagnosis. When they see a person they know standing in line to get pills or even on the way to or from the facility, they conclude that this person has TB and might spread this information to other people they know. Spreading this news could result in loss of social status and exclude the person from their circle of friends and acquaintances. One of the patients illustrated how stigma prevented him from visiting the health facility:

Odesa is a very big communal apartment. It is like a very big village. … when somebody sees you in the hospital he says: “Why is he going to the tuberculosis dispensary?” Most conclude that probably he has tuberculosis. If you show up in the hospital it becomes clear that something is wrong with you. It goes without saying because you go to the tuberculosis dispensary. In our city this hospital specializes only in tuberculosis. There is one in every city, in every district. So it is important from the psychological point of view and public opinion matters. I really care about it.

(male patient, Odesa)

One provider shed light on how stigma influence patients’ quality of life:

They also worry a lot. They go to TB dispensary and take their pills, but they live in constant fear that they will be seen there by someone. Drug users and alcoholics do not care whether they will be seen or not while normal people always worry.

(provider, Nikopol)

Patients reported that some of the patients they know do not want to get treated, and, therefore, refuse taking pills:

Half of the patients are very asocial. And they are not very interested in treatment. I know many people who do not want to receive any treatment and refuse medical aid whatsoever.

(female patient, Kryvyi Rih)

Benefits of the social support program that helped improve treatment adherence.

Two aspects of the Social Support program were stated as the most important to patients–home visits, since pills are brought to patients daily, and support provided by nurses.

The fact that pills were brought to a patient eliminated multiple adherence barriers related to getting to a HF to take pills such as transportation, time, lines in HF, inability to go to HF due to weakness, forgetting to go to take pills, etc. Thus, daily visits made adherence easier for patients. Patients described how visits made it simple for them to stay on treatment:

Yes, there are no issues related with getting treatment. Everything is so simple that they bring it to you, you take it, and continue on with your activities.

(male patient, Nikopol)

Almost all patients reported they appreciated not having to spend time, efforts and money to get to the HF daily and or waste time waiting in the lines at HFs.

(The nurse) brings the pills to home, so that you don’t have to go there, to be stuck in traffic. Even today you witnessed this (traffic). This is the norm for us. You will definitely not be on time, it is pure stress. This is not treatment, it is only stress.

(male patient, Odesa)

Over half of patients reported that minimizing side effects helped them stay on treatment. Some appreciated the home visit program for the opportunity to take pills and go straight back to bed right afterwards to rest.

After you take these pills, you want to lay down. She leaves, we say goodbye, I close the door and go lay down for a little. And you already feel a little better. Whenever you get nauseous, you want to lay down for a little.

(male patient, Odesa)

Almost all nurses reported they encouraged their patients to take pills after a meal. About a third of patient participants mentioned that side effects were reduced when they took pills with or right after a meal, which was easier to do when patients were at home.

Different effects occur. Meaning one day you take them and everything is ok but another day, you can become nauseous. As a rule, it depends on whether you have eaten. I noticed that if I take pills without food, then I may not feel well.

(male patient, Nikopol)

Most patients stated that it was important for them to have treatment outside of TB facilities to minimize contact with other patients as well as acquaintances and neighbors visiting HFs for testing. This feature of the SS program addressed fears of getting infected with another TB strain while visiting the health facility. It also addressed the concerns related to the stigma and risk of social exclusion if patients were seen by others (friends, acquaintances, neighbors) during their HF visits.

I feel comfortable now, not worrying about anything. When I go to the TB dispensary, which is in the city, I have a feeling that everyone looks at me. But here I am comfortable.

(male patient, Kryvyi Rih)

All patients were happy with the flexibility of nurses in scheduling their meeting times. Patients reported that nurses made it a priority to meet the interests of patients and satisfy patient needs. Thus, they were willing to meet with patients in locations that worked for patients and at times that were convenient for them. In addition, nurses were very flexible in their schedule; they were willing to adjust their schedule depending on patient needs. Thus, if a patient could not meet at the agreed time, nurses found another time during the day that worked for patient’s schedule.

It is more convenient for me to meet with the nurse rather than go to the TB hospital. Everything works for me because it is a convenient time, a convenient location. We are always able to find a good fit. If I am unable to, then she will work around my schedule. I can also work around her schedule. That is what was most fitting for me—that you could always find a solution.

(female patient, Kryvyi Rih)

I believe that what works is satisfying the desired conditions of the patient—however he wants it, it will happen.

(provider, Kryvyi Rih)

All patients appreciated the program for ensuring uninterrupted treatment. About half of patients said it would be more difficult for them to adhere to treatment but they would adhere and half said that they would stop treatment or have interruptions.

Actually, when the nurse started to come I realized that it’s better for me. If I had to go to the dispensary, I would have been going there for one week, but for another–no. And I would have never recovered.

(female patient, Kryvyi Rih)

Patients appreciated that they did not have to remember to take pills, and that a nurse’s daily visit served as a reminder.

If the pills were in my home, then I think I could have forgotten about them. Yesterday I forgot about my vitamins and today, I also forgot to take them.… I know myself in regards to that I would not follow the correct schedule but with a nurse it is simple, it is always on time.

(female patient, Kryvyi Rih)

From the interviews with nurses and patients, we learned that nurses possessed multiple qualities that promoted their work with patient adherence. Patients described nurses as open, sincere, approachable, responsible, flexible in scheduling, open for communication, being “positive”, and having good energy. Nurses had excellent interpersonal communication skills. In particular, they emphasized the importance of active listening. Nurses called themselves “psychologists” since they had skills to earn patient trust and build rapport. All nurses emphasized that gaining a patient’s trust was a door opener in their work with patients and patients also reported that they trusted their nurses. Nurses also stated the importance of treating patients as any other society member, as someone equal to them. They reported they accepted patients, understood their problems, challenges and needs. Patients valued and appreciated these attitudes toward them.

Nurses provided emotional, informational, instrumental (i.e. providing tangible assistance, offering a helping hand) and motivational support for their patients. All patients felt that nurses cared about them.

Furthermore, she keeps calling me, never forgetting about doing medical tests: “Go to do X ray, go.”…. I know that there is someone caring for me, who monitors my health and medical tests… I just really liked that she cares about me.

(male patient, Dnipro)

They reported that nurses provided hope and a listening ear, and they showed respect and empathy.

She (nurse) always asked “Name (omitted), how do you feel? How are you doing? Are you feeling well?” I say, “Yes, I am already getting better.” She constantly asked “Do you take vitamins? Do you eat well?” I am not able to say that we are friends, but I can say that I felt a lot of support from her. When she came, I was not doing well. We spoke a lot. … She always told me: “You will get treated and everything will be alright, you’ll find a job and everything will be normal.” She supported me.

(female patient, Odesa)

Patients reported they could trust nurses and could discuss any topic with them, including very personal issues:

I was able to talk to her about anything. I could talk even about those things that I wouldn’t have been able to talk about if I were standing in line.

(male patient, Odesa)

Half of the interviewed patients reported feeling isolated from society. For these patients, their nurse was the only other person they could talk to.

Tuberculosis is not a flu, but a sickness with which you need support. See, with another disease, you can talk to somebody, can share. With this disease, I cannot just talk to someone and pour my heart out. I was able to talk with the nurse, she knows.

(female patient, Nikopol)

All interviewed patients reported that nurses continuously provided them and their family members with a lot of information such as facts about TB, side effects, importance of staying on treatment to prevent drug resistance, healthy nutrition, recipes, importance of exercise, walks, and personal hygiene. An example from a patient about the topics discussed:

She explains as another human, shares such interesting things … For example, without her, the doctor said: “Take all your tablets, that is it.” She explained it completely differently—she explained the necessity for taking pills. She explained that you do not die from TB.

(female patient, Dnipro)

In addition to providing information verbally, nurses gave each patient a diary that contained information about tuberculosis, diet, and exercise. Patients were encouraged to fill it out with any information about how they felt, record side effects, if any, record daily temperature, questions to ask a nurse, etc. Patients appreciated having this source of information, valued its content and simplicity and liked that it was easily accessible.

Patients reported that their nurses reminded them about upcoming doctor appointments or lab work, brought referrals for lab work and informed patients about lab results or a need to repeat lab work. Some nurses gave advice on the best time of the day to visit the facility to avoid lines. Some brought tickets/passes to patients for lab work for a specific day and time to minimize waiting time in a facility.

She calls me and says: “You should visit the dispensary today. If you have time, you can go today, if no–you can go and get tested tomorrow. Skip the queue, say that you are referred by the nurse”. That’s why I always skip the queues. I enter the cabinet, doctor gives me the referral, I get tested and that’s all.

(female patient, Kryvyi Rih)

Nurses confirmed they brought referrals to patients for lab work and reminded patients about medical appointments. According to both patients and nurses, nurses were in continuous communication with patients’ doctors. When patients had severe side effects, nurses communicated with a doctor and the doctor substituted treatment with other pills or prescribed medication to minimize side effects. Several nurses said that they even accompanied their patients to health facilities.

While home visits in the USAID-supported social support program did not have any incentives such as food or clothing, all nurses provided such support to patients using URCS resources or their own. Most program recipients did not work, or worked part time; as a result, they did not have means to buy food. Nurses reported that they felt that they had to support patients as much as they could. Thus, when food was available at URCS from sponsors and donors, nurses brought patients bread, dairy products, watermelons, and fruit. When clothes were available, nurses brought patients clothing from URCS or invited patients to URCS to try on and choose what they liked.

(my nurse brought) a big can of beef. Based on my disease, as I understand, there are no food parcels. Of course, I also asked about receiving clothing. I have nothing to wear in the summer, no shoes, and no money to buy anything with. They looked, there is nothing available right now. If anything appears, then they will help me. They try to help me as much as they can.

(male patient, Nikopol)

If food was not available at URCS, nurses bought bread and milk out of pocket to support their patients.

From time to time, I buy some of my patients bread and milk. Simply I see the living conditions in which they live and try to help them in any way I can. They try to earn money wherever there is an opportunity… Sometimes I simply bring them a bottle of jam. I do not give them money because they can spend it on something else. In contrast, whenever I bring them food, I know that they will eat it and no longer be hungry.

(provider, Kryvyi Rih)

There were a few instances when nurses loaned money to patients so they could buy food. Often nurses gave patients money for transportation expenses to get to the HF for lab work or a doctor’s appointment.

You know, they do not go to the medical facility. They came once or twice but then no longer had money. They do not come anymore … For this reason, I take her myself and accompany her. She doesn’t have money to come on her own. Even if she did, she would not go on her own. I go with her there and support her, do you understand?

(provider, Odesa)

In other instances, nurses reported bringing cleaning detergents to low income patients so they could keep their apartments clean.

Nurses encouraged patients to stay on treatment, motivated them and reassured patients that they had qualities to stay on treatment and complete it successfully.

She only encourages me and says: “You are normal, you look fine, the results of the analyses are good. Soon this period of medicines intake will be over and you will be able to get official employment.”

(male patient, Kryvyi Rih)