1) Physical trauma.

1.1. Injections. Injectable during treatment was the most painful experience for patients and guardians, common for those who received second-line injectable (Amikacin, Kanamycin or Capreomycin). Patients and care-givers expressed moments of soreness and bleeding at the injection site when the patients received injectable every day. The experiences with injectable haunted the patients even after their treatment finished.

“The time I received injections was very difficult for me. I could not sit properly those days. There used to be a big swelling at the injection site, my mother had to rub ice on it all night. I could not sleep because of the pain.” (Patient 4; 16 year female).

“Injection was the worst during treatment. I can have multiple medicines. But it used to bleed daily due to injection. I don’t want injections anymore.” (Patient 1; 15 year female).

“When injections were going on, it was very painful; he used to cry a lot. He used to say that now that my cough is better, why do I need injections. It used to bleed sometimes. Twenty eight injections were given to him… that was the most painful moment for me.” (Guardian of 12 year male).

1.2. Pill burden. Patients and caregivers complained about the multiple drugs patients had to take in a day. Healthcare providers described that the drugs given for adverse events during DR-TB treatment increased the pill burden of DR-TB medications, thus patients had to take around 15–20 pills per day. Guardians and DOT providers felt it took a lot of time for patients to take their pills, especially children of younger age group (0–5 years). Pill burden also increased as paediatric formulations were not available for many drugs. The mere sight of multiple drugs made them feel nauseous.

“I had to take 15–20 medicines in one day, 4–5 were for side effects only” (Patient 1; 15 year female).

1.3. Non-palatable pills. Taste and smell of few drugs were unbearable for many patients. Though the nausea and vomiting improved during the course of treatment, but Ethionamide was most difficult to take for the patients.

“The most bitter medicine was given at the end, because often she used to vomit out… that medicine was like a poison.” (Guardian of 3 year female).

“Ethionamide has a strong smell, tablet causes gastritis… kids see the tablet and start vomiting. When you cut the tablet, it gives more nausea and vomiting.” (Healthcare provider 2).

1.4. Adverse events during DR-TB treatment. Patients and caregivers complained about physical complaints (adverse events) during DR-TB treatment. Difficulty in hearing was mentioned due to injectable while other adverse events mentioned due to DR-TB medications were difficulty in vision, pain in legs, skin colour darkening, nausea and vomiting during treatment.

“The injections that I received, I have buzz in my ears. My hearing power has decreased.” (Patient 1; 15 year female).

“She used to get PAS, whenever she used to have that medicine she used to vomit it out. So I had to mix it with something and make her eat.” (Guardian of 15 year female).

1.5. Drug compounding. Caregivers of children and healthcare providers felt drug compounding was a tedious and complicated process for caregivers. Though training was provided to the caregivers, healthcare providers acknowledged the challenges faced by caregivers in process of preparing accurate dose for children each time.

“It was difficult… I had to clean hands, wear gloves, then take the medicines… to prepare her medicines, one of them, I had to break into two, one part I used to give and other had to be thrown away.” (Guardian of 3 year old female).

“Drug compounding is a challenge because we do not have paediatric formulations. It’s too much for the mother to prepare each dose.” (Healthcare provider 6).

2) Emotional trauma.

2.1. Long treatment. The participants felt that the two-year treatment duration for DR-TB was too long. Six children and adolescents had previous TB treatment episodes and now reported treatment fatigue.

“I spent 4 years with TB. I wanted to study more, become a teacher. This disease has taken important years of my life.” (Patient 1, 15 year female).

2.2. Adverse event. Skin darkening. Skin colour discoloration due to Clofazamine was mentioned as the most stressful adverse event for patient and caregivers. It hampered patients’ motivation and contributed to self-stigma.

“Her colour has darkened due to medicine, when we will start looking for match (groom for marriage), people will ask what has happened to her.” (Guardian of 15 year female).

“It is difficult for them (patients) to accept the way they look… colour of skin… they feel sad that they cannot talk to other friends, sometimes they go into depression.” (Healthcare provider 4).

2.3. Anger and anxiety during treatment. Anger and irritability was mentioned as an adverse event due to DR-TB medication (Cycloserine), while patients and caregivers were also anxious about cure of the patient. Many of the patients had previous TB episodes, and they were irritated and sad, why they had TB again; and now more severe form of disease. The anxiousness however, reduced with due course of treatment when they completed treatment.

“I used to be very angry about the treatment. I used to hate the medicines.” (Patient 2, 18 year female).

“I was anxious that how will my child have these medicines for 2 long years, the duration was a lot for me. After the treatment started, I had no complaints.” (Guardian of 12 year male).

2.4. Loneliness and disrupted social life. Participants mentioned that DR-TB disease treatment led to missing school, college and playing with friends. Patients often had to stay indoors during treatment. Caregivers also could not leave the city during treatment and attend family events. Many caregivers lived with their child separate from their family, with the fear of TB transmission to others.

“I used to love going out. I liked to go to school. I liked talking to friends. I used to get bored sitting at home.” (Patient 3; 16 year female).

“So I never used to go out anywhere. I used to think if I go out somewhere and I cannot come back home at night due to transport cancellation, bad weather, my child will miss the dose. With that fear, I never used to go anywhere far from house.” (Guardian of 3 year female).

2.5. Multiple TB patients in family. A majority of patients had their caregiver either suffering from TB or another family member who had or was currently suffering from TB. It was difficult for the caregiver to provide support to multiple members of family suffering from TB.

“It is difficult for the mother to support the treatment of 3 children with different age group and different treatment. It’s too much of disease burden in the family to take care.” (Health care provider 8).

“Yes it was difficult, because I was also on treatment; it was difficult to maintain her health. (Guardian of 3 year old).

3) Unavailable social support.

3.1. Girl child. Healthcare providers mentioned that female children did not seem to receive equal care as male children, but caregivers and patients did not describe that. Caregivers were concerned about future of girl child after treatment, especially about her marriage. They did not prefer to disclose about DR-TB disease to prospective groom’s family.

“For girl child many families do not pay attention to their treatment or timely food… the family doesn’t give 100% effort.” (Healthcare provider 1).

“I am also worried about my girl’s marriage, we can’t tell others that she had TB… it will be difficult to get her married.” (Guardian of 15 year female).

3.2. Blame or shame. Patients and caregivers expressed that they were either blamed for spreading the disease or they themselves had the guilt about this. The blame/shame of disease transmission reduced their interaction with other family members, and they were forced to stay alone during DR-TB treatment.

“I stayed with my extended family, my uncle, aunt, cousins, grandmother. After my illness, my sister also got TB with me. She complained why I was brought from my village. She said she got TB from me, because of me her life finished.” (Patient 1; 15 year female).

“I was given treatment for MDR-TB 5–6 years back, when my youngest one (child) was born. He was also given treatment for 6 months so that he doesn’t have TB. When I got to know that my (two) children have illness, I thought I should go somewhere and die.” (Guardian of 8 year male).

3.3. Discrimination in community. Low awareness about TB in family and neighbourhood contributed to discrimination and stigma for patients in the community (including schools). Caregivers and patients mentioned that patients went to school without masks fearing discrimination.

“My neighbours knew I had TB, so they used to tell everyone that they should stay away from me else I will spread the disease to them. I was asked not to sit outside home; they used to scold me that don’t come outside.” (Patient 1, 15 year female).

“… they asked me to wear mask in school, but you know, how can I wear it. They will ask what happened.” (Patient 3, 16 year female).

3.4. Expensive treatment. Though MSF Clinic provided DR-TB treatment free of cost, patients and caregivers mentioned about expenses incurred in previous TB treatment(s) which led to significant financial loss to the families.

“I took medicine for 2 months.. but the medicine was very expensive. My father told doctor that he cannot afford the expensive drugs.. so the doctor advised to go to municipality (government) hospital..” (Patient 1, 15 year female).

4) Non-adapted healthcare services.

4.1. Minimum conversation with provider. Patients complained about apathetic attitude of some healthcare providers. The patients and guardians expressed concern that few doctors did not communicate with them directly about their illness.

“Doctors in hospital sometimes do not talk to us nicely… they keep us away from them. They say, don’t sit with other patients.” (Patient 5, 19 year male).

“Hospitals do not explain well… they do not talk well. Patients are asked to stay far from doctor… they are often angry on patients.” (Guardian of 8 year male).

4.2. Irregular feedback during treatment. Participants reported that the medical consultations during follow up were mainly restricted to adverse events management. No attention was given during follow up if they did not have adverse events.

“Doctors should talk to patients first with care and emotion. They should not give stress to patients, asking why you are not taking medicine.” (Patient 5; 19 year male).

“Feedback is only taken when they have adverse events. Yes, we miss taking feedback. We should ask them regularly after every 2 month, so that they feel they are spoken to.” (Healthcare provider 2).

4.3. Inexistent age-adapted counselling tools. Healthcare providers mentioned that child/adolescent friendly spaces and age-appropriate counselling tools were required for improved care for children and adolescents during DR-TB treatment. The patients and caregivers mentioned that they wanted more information about the DR-TB disease and treatment for them and their families.

“We need to make audio-video or cartoons (about TB) for younger age group: 3–10 years” (Healthcare provider 5).

“They should explain what drugs is given, what will be the side effects. If we know it before, then we will not feel scared.” (Patient 1, 15 year female).

4.4. Difficult adherence checklist. According to participants, completion of paper-based monthly adherence monitoring tool was a tedious process and they (patients or caregivers) acknowledged that the patients often forgot to mark it at the time of medications. Healthcare providers mentioned they did not push patients or caregivers for completing the checklist, as they feared they would lose trust and will not confide their issues in healthcare providers.

“I did not like filling it but my parents used to say, so I used to fill it up.” (Patient 2, 18 year female).

“Yes I received the treatment calendar to tick when I give medicines to her. But I could not completely follow it. I tried for few weeks, but the child used to tear it away or drop something on it.” (Guardian of 3 year female).