- There is still a huge stigma attached to TB and many parents refuse to admit that their child is infected with TB. This makes it a difficult issue to discuss with caregivers.
- Interview Gabriela Adao
What does adherence mean and why is it so important for tuberculosis treatment?
"Adherence is the fact of complying strictly with the intake of specific drugs. In practice it means that one should take the drug at the right time and for the full period of treatment.
"For TB, not adhering properly to one's treatment makes it inefficient leading to death or to the development of resistance to drugs. As there are very few available treatments for TB, it is an issue we have to be very careful about. The extra challenge in the case of TB is that the treatment is quite heavy and lasts between six and eight months."
What are the main tools to make sure people adhere to treatment and how easy is it to apply them in contexts where MSF works? "The World Health Organisation (WHO) recommends the Directly Observed Treatment - Short Course (also known as DOTS). This means that patients have to take their daily drugs under the supervision of a health professional or a specifically trained family or community member. But in most contexts where MSF works, daily access to an adequate health centre is very difficult.
"Causes can be conflict, bad road network or simply the collapse of the heath system. So in practice, daily supervision remains an utopia. So in different contexts, MSF is trying to make the patient the main actor of his or her own treatment."
In Monrovia, Liberia, what were the main obstacles to children's adherence to treatment?
"First of all, it is important to remember that, in the case of children, it is their caregiver - usually the mother - who is in charge of administering treatment properly. In Island Hospital, the main threat to adherence was the parent's lack of money to pay for transport to come back to the hospital on a regular basis.
"Also, there is still a huge stigma attached to TB and many parents refuse to admit that their child is infected with TB. This makes it a difficult issue to discuss with caregivers.
"Mothers and caregivers are sometimes quite sick themselves so it's difficult for them to take care of the treatment of their child.
"Most mothers have more than one child and spending time and energy to travel regularly to the clinic means that she has to find ways for the other children to be cared for in the meantime."
How did you increase children's adherence to treatment in Island Hospital?
"The backbone of our strategy is to make sure caregivers are in total control of the treatment process, that there are the main actors in the child's treatment. We achieve that by informing and educating them before and during the whole process.
"We believe that giving them that responsibility is the only way to complete the treatment without constant medical supervision. The medical staff in Island Hospital does not have a supervision role, but through regular counselling sessions, they get the caregivers to decide what will be the best way proceed with treatment."
How do those counselling sessions work in practice?
"Before we start treating a child - sometimes even before we are certain that the child has TB - the first counselling session takes place with the caregiver. The first task is to explain what TB is and how their child got sick. At the same time counsellors always try to know how parents see and understand the disease.
"This discussion will lead to a decision on what will be the best way to make sure the child takes his or her tablets on a daily basis for the whole treatment period.
"The child then spends two weeks in hospital with the caregiver who will attend first drug intakes and who will be educated further on how to administer the treatment. The following two months is the "intensive phase" where the mother will have to come back to the hospital quite regularly to pick up the tablets. Each time she comes back, a counsellor will talk to her to see what problems she is facing, and how things could be improved.
"During that initial phase and the rest of the treatment period, those one-to-one sessions allow mothers to talk about a lot of problems they face in their daily lives: social, economic, household, etc. We are not there to solve social problems or to give money, but the idea is to sit down with the mother knowing that those problems can culminate in bad adherence to the treatment. We then try to think together about how they could manage this situation with regards to treatment."
How successful is this counselling approach?
"I'm really surprised with the results of the approach. Even though people face many of social and economical problems, they really feel comfortable with this approach and they are really giving the drugs to children properly.
"The most positive thing is the relationship based on trust that develops between caregivers and counsellors. It is crucial for parents - usually mothers - to be able to talk about their daily lives and the constraints they face regarding the treatment of their child. This "supportive communication" is at the core of our strategy and allows our counselors to help caregivers find the best ways to adhere to the child's treatment.
"Another important fact is that once mothers see that the health of their child is improving, they realise that it works, and the positive feed back they get in counselling sessions encourages them to continue in the same way.
How many children are currently on TB treatment in Island Hospital and what are the prospects for the future?
"At the beginning of March 2006, there were about a hundred children on treatment, and now that the programme is stabilised, we hope to add 20 to 25 new children every month. We expect numbers to increase because we have improved the quality of the screening, reinforced the referral system, and increased training about TB for Liberian staff.
"I think that Island Hospital will be the place in Monrovia where health staff from all around in the health structure will refer the kids when they have any suspicion of TB.
"In Liberia, as in many developing countries, the national policy on TB focuses on adults because most infection occurs through them. The fact that there is no children-specific policy makes projects like the one in Island Hospital incredibly important. It reaches a population that is not targeted by any national policy."