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Nurse Gabriela Adao
|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.|
Adherence means 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 development of resistance to the medications and even death. 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 6 and 8 months.
The World Health Organization (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 center is very difficult. This may be because of conflict, a bad road network or simply the collapse of the heath system. So, in practice, daily supervision remains a utopia. So in different contexts, MSF is trying to make the patient the main actor in his or her own 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 is the parents' 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 the disease. 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. In addition, 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.
The backbone of our strategy is to make sure caregivers are in total control of the treatment process, that they 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 counseling sessions, they get the caregivers to decide what will be the best way proceed with treatment.
Before we start treating a child — sometimes even before we are certain that the child has TB — the first counseling 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 counselors 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 the hospital with the caregiver who will attend the 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 caregiver will have to come back to the hospital quite regularly to pick up the tablets. Each time she comes back, a counselor 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 counselors to talk about a lot of problems they face in their daily lives: social, economic, family, etc. We are not there to solve social problems or to give people money, but the idea is to sit down with the mother or other caregiver 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.
I'm really surprised with the results of the approach. Even though people face many social and economic problems, they really feel comfortable with this approach and are really administering the drugs to children properly.
The most positive thing is the relationship based on trust that develops between caregivers and counselors. 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 realize that it works. And, the positive feedback they get in counselling sessions encourages them to continue in the same way.
At the beginning of March 2006, there were about a hundred children on treatment, and now that the program is well established, 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 over the health system will refer 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.