Opportunistic Infections

Friday, December 07, 2007

HIV - Antiretroviral treatment alone is not enough for children

By, Rwanda News Agency/Agence Rwandaise d'Information (Kigali), December 5, 2007

"People say Aids is a deadly disease. That we die as soon as we get it, but I am still alive!", says Clarisse. She is 14 years old, aware of her status but has not given up on life - instead believes she is got nothing that could deny her right to be like any other child.

Clarisse is among the 315 children that are on ARV treatment at two Medicin sans Frontier supported clinics in Kigali - Kimironko and Kinyinya Health Centers. They range between 2 months and just under 21 but are organized in several age groups - that according to MSF - are meant to have them in groups because they require different support approaches.

The organization has come up with an HIV response that entails medical care specifically adapted to people infected with HIV.

The 'comprehensive care' as it has been called included voluntary counselling and testing, information and awareness activities, treatment of opportunistic infections and sexually transmitted infections, a mother-to-child transmission prevention programme. In October 2003, MSF started giving out free antiretroviral therapy (ARV).

In total at the moment, the organization supports up to 6200 HIV positive patients at the same centers with some 2700 on ARV doses. The patients are supported from their homes.

Since the year 2000 when the organization moved into the latest program, there has only been 2.6% mortality rate among children and just 4.9% for the adults. In other countries, according to Dr. Johan Van Griensvem - head of the HIV program, mortality runs at 10% or even more.

Dr. Johan says the solution here has been simple: apply the medical component - where ARVs are given to the patients along with psychosocial support. "This means that patients not only recover medically but also improve psychologically - from feeling stigmatized, depressed and no future", he says.

However, as he explains, responding to the medical needs of the children - has been the most moving experience and success factor for the MSF HIV program - with targeted and well-thought out mechanisms. The organisation actually wants the 'Amagambo y'Abana' (Children's Voices) program adopted countrywide and internationally.

The innovative approach focuses on the specific needs of children living with HIV in Rwanda - targeting their mental well-being.

The Psychosocial support component, as it has been called, gives these children a voice, allows them to play an active role in the treatment of their condition and helps them develop a 'positive attitude towards life' by gives them a chance to express themselves. The results, as Dr. Johan put it, have been very encouraging.

But again, the children live in the communities and helping them heal may not be that effective because they have the outside world, the families, the strangers and non-infected friends. MSF believes Communities can help end discrimination and make children feel part of society.

One of the major barriers for a paediatric HIV programme to overcome, according to the organisation is the reluctance of both caretakers and healthcare staff to test children for HIV. This reluctance stems largely from what has been dubbed the "fear of the result."

The solution has been to have regular sessions at the health centers whereby the parents or guardians are encouraged to come along with the children. There has also been the 'home-based care' approach - where MSF teams move down to the communities to meet the affected families.

By letting the caregiver and child know their status, as this approach suggests ensures every child is adequately informed and his or her questions and concerns addressed. From the many child-groups that the organisation supports, HIV status is only disclosed to children aged seven years and older.

Ms. Jeannine Uwera - a Psychologist with the program, says the child-parent relationship is very important and needs to be respected by exploring ways for them to communicate with each other about HIV.

After the child knowing that they are infected, they are encouraged to join support group sessions organized monthly - where they get to express themselves freely and ask anything on their minds. The health works at the centers - trained specifically by the organisation to handle such situation - are expected to give them answers that suit their level of understanding.

"Which essentially means that the way you talk to a 7-year-old cannot be similar to the tools you apply when exchanging with an adolescent", says Uwera. With a child, as she explains, you may need games, story telling and drawing sessions to convey the messages.

However, according to the MSF Psychologist, the issues discussed are raised by the children and often reflect their deeper feelings. The children raise questions about the virus such as the 'what, why and how'- life and death - sexuality - difficulties in the parent-child relationship - stigma - and discrimination.

The different support groups in the country provide same medical protocols, as Dr. Johan explains, involving same medications and counseling - which approach needs a more responsive approach to children. The Psychosocial support is quite original, he says adding that though everybody provides that counseling, this approach comes as a focused additional effort.

"People say that we are sick with Aids, but we are not sick", echoes 14-year old Jean Paul - who has been on ARVs since 2004 - an indication that he understands the dynamic of the situation he finds himself. "We have the Aids virus. That is all".

As for 14-year old Alphonse: "Many people talk rubbish because they are ignorant. It is because they do not understand what Aids is and they do not know ARVs exist."

However, for 13-year-old Jean-Claude, all has not been that simple in a family where he lives with an 'aunt and uncle' with two younger cousins - with whom he always fights - just like any other children of that age.

"They tell me to go back to where I come from. They insult me all the time because of my disease (HIV)", he says. With the understanding that he needs a family that accepts him - Jean-Claude prefers to live with another relative - who he visits during holidays. There, as he says, I feel respected.

Among the children includes orphans from HIV/Aids living with guardians. There are those with single parents as well - but there also others that have both of their parents. In addition to availing support that enables the communities help themselves such as small self-help income projects.

MSF leaving

Médecins Sans Frontières (MSF) has been in Rwanda since 1991. Through the years, the medical humanitarian organization provided medical assistance to displaced and refugee populations during years of crisis and conflict. When the cholera hit, the organisation was there. As the needs of the country evolved, it moved dealing with mental health issues after the genocide especially among women.

Sixteen years down the road, the organisation is ending operations this December and has already handed its HIV program - the last of its activities to government. According to Dr. Johan Van Griensvem, the priorities that government has set itself suggest that the country is ready to continue with program.

The hope we have is that they will continue to focus on care for children - in particular psychosocial support to the (affected) children, says Dr. Johan.

The organisation wants government to stay put on the plan to increase its human resource capacity especially the health sector with particular need for social workers that help communities overcome challenges such as HIV/Aids.

MSF also calls for a scale-up of a similar 'comprehensive approach' to HIV to other areas around the country and not just Kinyinya and Kimironko health centers - though these have been supporting victims from across the country.

"We have the medical analysis - where we have compared this program with others - and it (MSF approach) does bring a lot of added value" says Ms. Syviane Bachy, the Communications officer. "It does not require too much input and yet it gives amazing results - that is why we really believe it should be an integrated part of comprehensive care."

MSF has also provided direct nutritional supplies such food and supplements for children in collaboration with other organizations - the WFP included.

Source: http://allafrica.com/stories/200712050790.html


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