Barriers and facilitators of TB treatment in the Indian subcontinent: subthemes and illustrative quotes
| Sub-themes | Illustrative quote |
| Sub-theme 1.1: The influence of a patient’s social role in the family | My husband used to give me the medicines himself. Children and housework were being neglected and he was very concerned about that. (in-depth interview, control arm – female, Rawalpindi district) 46 They talk about me differently and gossip about my disease, I have a family to look after. My daughter is yet to be married.” [Patient 15, male, 47 years, urban slum] 52 |
| Sub-theme 1.2: The influences of their own priorities in day to day living | “He (another patient who came to take DOTS) is only 35 years old and has two small children. He comes to TB hospital by morning 9.30 and by the time he reaches his house it will be afternoon 2’ o clock. He will not have any time to go to work. He is in such a situation that if he does not go for his treatment, he will die and if he does not go for work, his children will die”(PP referred, M, U, 65 years)” 62 |
| Sub-theme 1.3: The influence of their own experience of the illness | A 27-year-old male TB patient shared a photograph of himself lifting up his young son and said: “This is that moment of happiness when I realised that I was getting better. So, in excitement, I picked up my son and threw him in the air. He had a habit (of saying) ‘Throw me up in the air!’ Before, I couldn’t even pick him up. I couldn’t even hold his hand to help him walk. When I threw him in the air, I was thrilled. This showed that I’m now getting better. I felt very happy.” 59 |
| Sub-theme 2.1: Providers are overburdened with pressure to meet targets, straining their relationship with patients | A volunteer health worker interviewed in Bangladesh was quite clear that the patient’s right to confidentiality is not as great a priority for her as protecting the public’s health by ensuring adherence to treatment. “Actually, patients should handle their family problems. I’m responsible for ensuring DOT is adhered to for the sake of other community members”. (Volunteer health worker, Bangladesh) 49 |
| Sub-theme 2.2: People who do not adhere are profiled as being ‘difficult’ leading to further discrimination | A DOT worker in one clinic approached the problem in this way: she starts a patient on treatment and if, after a few ‘test doses’, the patient experiences problems or does not come regularly for DOT, the health visitor discontinues the treatment. The patient is recorded as one who refused DOT. No further reference need be made to this patient. The TB treatment card is removed from the centre and so no record exists of this ‘enrolment.’ In other words, the patient is not recorded as a ‘defaulter’ and the clinic records (and therefore ‘results’) remain unaffected.47 DL is a very old man who lives with his wife but no extended family. He was working until 1995 when he fell ill with TB. Eventually he was enrolled as a patient at one of the DOT centres and commenced treatment. Sometime into his treatment course, however, his wife fell ill and had to be hospitalised in a private hospital. During the period of her illness, DL was compelled to interrupt his TB treatment in order to look after her. Later, when he approached the DOT centre again, he was advised to go back to Moti Nagar chest clinic for another sputum examination. He borrowed Rs 50 from a neighbour to reach the clinic, but when he arrived and explained his situation (that he had previously been on treatment but had stopped), the staff there behaved rudely towards him. DL felt hurt and insulted. He returned home and refused to join back.54 |
| Sub-theme 3.1: Although ostensibly free, accessing TB services costs time and money | A 30-year-old TB treatment supporter shared: “This is a picture of a patient’s street where rain and sewage water have collected. We cross this with great difficulty to reach their house…We find it very difficult, and we worry that we may not be able to get their medication to them…She now has multi-drug resistant TB. If she misses her medication, I don’t know if she’ll get better or not. 59 |
| Sub-theme 3.2: Information from health providers is often inadequate and confusing | “First, I could not afford the type of food recommended by the doctor. And even if once in a while there was something available, I could not bear to eat it in front of my children, who ate ordinary food, like chappaties and lentils. (focus group, family member arm – male, Gujranwala, district)”46 “living in poverty is very challenging as it keeps changing our priorities…mostly in taking care of my family, I forget that keeping good health is also important…if I take leave from work then how will I feed my family” 55 |
| Sub-theme 3.3 Consequences of stigma and need for strong social supportive system | “My mother-in-law insisted on giving me the medicines herself. She was quite nasty to me during my illness and used to say that I had brought this infection from my parents’ house. She wanted me to get cured quickly, because the house work was being affected and also due to scare of spreading the disease in the family. (in-depth interview, control arm – female, Rawalpindi district)” 46 |
DOT, directly observed treatment; TB, tuberculosis.