Table 4.

Representative participant comments

Transportation assistance

I am receiving 50 pesos per day allowance from the center, but it is not enough and sometimes delayed. I am spending 100 pesos every day for my tricycle fare, so I always fill in the balance of 50 pesos. Sometimes there is a delay in depositing the money. That is why sometimes I borrow from my neighbors. If they let me borrow, I go to the center. If not, I just stay home. (Male, 47 years old, LTFU)

Another big help for me is transportation assistance. Though I am already receiving it, still it does not help a lot because it is less than my actual transportation fare. Maybe it would help if they adjust the amount to the actual fare. If this is so, I will not have any more reason not to go to the center and take my medication. (Female, 52 years old, undergoing treatment at time of interview)

Food assistance

It would be good if there is food in the center because sometimes we don’t have food at home. It will be a big help, not only for me, but for other patients as well. With this, I don’t need to worry about what to eat, or if there is something to eat. Sometimes also, I felt less side effects when my stomach is not empty. This is also the one thing to encourage the patients to go to the center. Besides, we don’t have to spend the transportation allowance to buy food. (Female, 18 years old, undergoing treatment at time of interview)

I would like to receive, if it is not too much to ask, food so that it will not be too difficult to take medication. Besides, it will lessen the adverse effects, especially stomach upset. Also, if there is food daily, I am assured that I have something to eat before or after taking my medication. (Male, 23 years old, LTFU)

Medication factors/treatment duration

Though I know that the minimum duration of treatment is 18 months, I still wish that it can be shortened. I am so eager to work so that my family may have something to eat, but I cannot do it if I am still on treatment. I cannot afford to work [and] at the same time, take medications because of so many side effects. So I have to choose treatment over work because I am sick. But it troubles me a lot to see my mother doing everything for us to survive the day. I wish that I am already done with my treatment so that I could help her. (Male, 35 years old, undergoing treatment at time of interview)

Treatment of MDR-TB is very complicated. The medications are also complicated. It has to be a combination of drugs and injections and there is nothing I can do but take them. But if I have a choice, I choose not to drink PASER (para-aminosalicylic acid). The mere sight of PASER made me vomit. There were times that I was walking and I thought of not going to the center instead. I would have my body ran [over] by a bus. I wanted to commit suicide. I just thought of my family. That’s why I did not do it. (Male, 57 years old, undergoing treatment at time of interview)

Housing

Another thing that would help is the provision of halfway house. I have already availed this benefit and I can testify that this is a big factor why I am able to finish my intensive phase…. If I were not in-housed, I might not be able to finish my treatment. There are many side effects that I had experienced. There was a time when I was not able to get up and walk due to joint pain. The people there helped me get through and I was thankful that I didn’t need to travel. Being in-housed was great, but the only thing that I want to suggest is provide food, enough food for the patient. (Male, 29 years old, undergoing treatment at time of interview)

Another thing that would help is provide a halfway house near the treatment center. This will be more convenient for us who live far from the center … and I can take my medication even if it’s raining. When it rains it floods in our community because the area is very low, and this caused me to be absent. (Female, 29 years old, undergoing treatment at time of interview)

If the government will open half-way home for the patient. This will protect the family of the patient to be infected. Then, if the patient [is sputum smear] negative, he has to leave the shelter so that new patients can live there also. (Male, 44 years old, undergoing treatment at time of interview)

Treatment centers closer to home

I had difficulty going to the center every day because of lack of money for transportation. Also, I need to wake up earlier because I have to travel 1 to 1½ hours to get there. I started having absences and eventually stopped. If there is a treatment center near my house, there will be no problem going there. I should have finished my treatment if there [was] one near my place. (Male, 25 years old, LTFU)

I would like to have a treatment center near my house. There are so many patients who need treatment but there is no treatment facility in the area. If the center is near my house, I don’t have to travel far. I am so weak and can’t travel anymore. I know that there [are] lots of patients out there like me. Another benefit is that aside from the short distance, I don’t need to spend a lot for transportation. (Male, 31 years old, LTFU)

Direct observed therapy at home

Though there is a health center near my house, I still want my medication to be taken at home. If ever there are adverse events, especially vomiting, I can easily go to my room and vomit there. At least I’m already at the comfort of my home and avoid embarrassment. (Male, 44 years old, undergoing treatment at time of interview)

I can’t see anymore. I need to have a companion to be able to go to the center and I can’t rely on my children to go with me because they have jobs … It would be best if somebody will bring my medication to my house. I won’t have to go out and bother my children or my son-in-law bringing and fetching me to and from the treatment center. (Female, 60 years old, LTFU)

Patient/community education

My number one [suggestion] is health education because I think it is what every individual should receive. It is very important that I know my sickness, what should I do to be cured, who should I talk to, and where can I go to get the right treatment. (Male, 30 years old, undergoing treatment at time of interview)

Psychological or spiritual counseling

Psychological counseling is very important because we, patients, are experiencing dilemma and anxiety. We are torn between the treatment and coping with the side effects of the medication, besides, facing the future with uncertainty. For me, I would always ask myself, what happens next? … Sometimes, I would think of quitting, especially when I experienced the pain due to uric acid elevation. I could no longer walk. But then again, I would think of my disease and my family. Talking to a counselor is a great help because I am able to release my unexpressed thoughts and get enlightenment. (Male, 28 years old, undergoing treatment at time of interview)

Losing a husband while I am sick is very devastating. I started experiencing depression and self-pity which made me feel more ill. This is the main reason why I quit treatment, because I felt that my life is already worthless so I wanted to die also. But as the days pass by, I realized I should not be selfish. I should consider my children, though they are already married, and my grandchildren whom I am really fond of. I wanted to become strong for them, but how? That is why I really need to talk to a professional counselor, because I know that he could help me through my depression. (Female, 48 years old, LTFU)

Free hospitalization or access to specialists for adverse drug reactions

Another thing that would help is the provision of free hospitalization and surgery. Sometimes, I don’t tell [the doctors and nurses] what I really feel because I am afraid that I will be hospitalized. It is very expensive and I don’t have money for it. But if it is provided, I will not need to hide what I really feel [medication side effects] because I know that I won’t have to pay for the hospitalization should there be a need. (Male, 24 years old, undergoing treatment at time of interview)

There are government hospitals which accommodate indigent patient[s]. The problem is they do not have medicines. They just give us prescriptions so that we may buy them [prescribed medications] from the outside. (Female, 52 years old, undergoing treatment at time of interview)

Improved staff relationships, communications, or rapport with patients

Train health staff more when it comes to knowledge, especially psychologically. Some staff are not accommodating and not approachable. (Male, 47 years old, undergoing treatment at time of interview)

Make sure that staff will be trained so that they will not despise patients. Patients might get fed up if this continues. (Male, 46 years old, undergoing treatment at time of interview)

Treating patients better will alleviate patients feeling of depression. (Female, 19 years old, undergoing treatment at time of interview)

The nurses are not accommodating. They scold the patients and hurt our feelings. (Female, 39 years old, LTFU)

LTFU = lost to follow-up; MDR-TB = multidrug-resistant tuberculosis.