HIV+ kids fall through cracks
Sep 21, 2008
AS he plays in the waiting room of his doctor’s office, 11-year-old Dan is like other children his age. Clad in a torn shirt, shorts and a pair of sandals that are falling apart, he cheerfully fits in well with his two brothers and other children.
By Milly Nattimba
AS he plays in the waiting room of his doctor’s office, 11-year-old Dan is like other children his age. Clad in a torn shirt, shorts and a pair of sandals that are falling apart, he cheerfully fits in well with his two brothers and other children.
His most serious problems appear to be a thick coat of yesterday’s dust on his feet and the sweat covering his energetic body. You would not know that Dan is HIV-positive.
Anti-retroviral treatment (ART) is keeping him healthy, but he owes his normal, youthful enthusiasm to something more — he is one of the lucky few who receive counselling along with his ART.
Counselling may seem like a luxury in a country where only 20,000 of an estimated 150,000 HIV-positive Ugandan children are even getting ART.
But it is an important, perhaps even a crucial part of successfully treating children living with HIV. Without it, infected children can become isolated and depressed.
Lacking the emotional tools to cope with stigma and uncertainty, they have trouble living normal lives. Many will even die, since without counselling, children are less likely to continue taking their drugs on the strict schedule required to remain healthy.
Unfortunately, there seems to be more emphasis on covering as many children as possible with ART provision; focusing on more years of survival without thinking about the quality of survival. As a result, counselling is even less available to HIV-positive children than ART.
The head of the Paediatric Unit at Joint Clinical Research Centre (JCRC), Dr. Victor Musiime, says scarcity of child counsellors causes this gap. “The challenge is that testing services are limited and the gap is because counselling has not been appropriate.
People trained to identify and provide pre-test and post-test counselling for children with HIV/AIDS are still few.â€
The JCRC Kampala centre looks after 3,000 children, yet it has only two children counsellors. Sylvia Ofumbi Nsiyonna, one of the children counsellors at JCRC says: “There is need for a lot of follow-up.
Each case should not be handled at the clinic and left alone. Most of the caretakers need to be followed up so that they understand the seriousness of the challenge. This requires many people who understand what this involves.â€
A research carried out in the districts of Tororo, Katakwi and Lira, revealed that due to lack of counselling services for HIV-positive children, many of them were suffering from self-stigmatisation and denial.
Why HIV-positive children need counselling
According to the International HIV/AIDS Alliance, counselling helps children tell their story, make choices, recognise their strengths, develop a positive attitude to life and cope with problems. It also helps them deal with fear and anxiety about their illness.
Rose Nasaba who has counselled HIV-positive children for over 10 years, says: “If not helped through counselling and guidance, HIV-positive children grow up with a lot of anger.†As adults, such children may fail to form appropriate relationships.
All children, whether sick with HIV or not, have the same needs. A child living with HIV, however, needs assurance that there is a future to live and neither they nor their parents are to blame for having HIV.
The child needs support to live positively with HIV. This child needs information regarding his or her sickness, and what is going on around them. Being HIV-positive does not stop them from enjoying their childhood.
Unfortunately, many parents and caretakers find it difficult talking to children about their HIV status. While some parents are frightened of answering questions that might arise from such talk, others feel children should not be involved in discussing ‘adult issues’.
This, however, denies the child the opportunity to get appropriate support through counselling.
Rose says counselling children is different from counselling adults and requires specialist skills. “While adults communicate through talking, children communicate through playing and drawing to express their feelings and concerns.
This way, a counsellor is able to hear the things the child is not saying. Thus children need to be involved, allowed to ask questions and express their fears.
Counsellors also discuss death with these children, which requires a high degree of honesty and truthfulness.
Counselling for HIV-positive children needs to be made more widely available. Musiime says mentoring can create a multiplier effect.
“We need to start with what we have. So we need to retrain adult counsellors to take on counselling for children, especially upcountry,†he says.
In Rose’s view, the communities should be facilitated to contribute to the holistic growth of the children. Teachers need to be equipped with skills to handle HIV infected children.
Caring for sick parents and siblings and growing up with HIV causes a lot of trauma to these children. They miss classes, doze during lessons and sometimes, score poor grades.
Teachers need to spot these troubled children and draw strategies that can help them compensate for lost time and opportunities.
The Government should work at ensuring that all health facilities that provide ART services are also accredited and equipped to provide counselling for children, especially in the rural areas where choices are limited.
Dan is approaching adolescence thus many changes are happening in his life; he is experiencing rapid growth physically and sexually.
He needs to be educated and counselled on the importance of being sexually responsible to prevent the spread of HIV.
The writer is a MIJSPH/CDC HIV/AIDS Fellow attached to the school’s Department of Health Policy, Planning and Management and The New Vision
AS he plays in the waiting room of his doctor’s office, 11-year-old Dan is like other children his age. Clad in a torn shirt, shorts and a pair of sandals that are falling apart, he cheerfully fits in well with his two brothers and other children.
His most serious problems appear to be a thick coat of yesterday’s dust on his feet and the sweat covering his energetic body. You would not know that Dan is HIV-positive.
Anti-retroviral treatment (ART) is keeping him healthy, but he owes his normal, youthful enthusiasm to something more — he is one of the lucky few who receive counselling along with his ART.
Counselling may seem like a luxury in a country where only 20,000 of an estimated 150,000 HIV-positive Ugandan children are even getting ART.
But it is an important, perhaps even a crucial part of successfully treating children living with HIV. Without it, infected children can become isolated and depressed.
Lacking the emotional tools to cope with stigma and uncertainty, they have trouble living normal lives. Many will even die, since without counselling, children are less likely to continue taking their drugs on the strict schedule required to remain healthy.
Unfortunately, there seems to be more emphasis on covering as many children as possible with ART provision; focusing on more years of survival without thinking about the quality of survival. As a result, counselling is even less available to HIV-positive children than ART.
The head of the Paediatric Unit at Joint Clinical Research Centre (JCRC), Dr. Victor Musiime, says scarcity of child counsellors causes this gap. “The challenge is that testing services are limited and the gap is because counselling has not been appropriate.
People trained to identify and provide pre-test and post-test counselling for children with HIV/AIDS are still few.â€
The JCRC Kampala centre looks after 3,000 children, yet it has only two children counsellors. Sylvia Ofumbi Nsiyonna, one of the children counsellors at JCRC says: “There is need for a lot of follow-up.
Each case should not be handled at the clinic and left alone. Most of the caretakers need to be followed up so that they understand the seriousness of the challenge. This requires many people who understand what this involves.â€
A research carried out in the districts of Tororo, Katakwi and Lira, revealed that due to lack of counselling services for HIV-positive children, many of them were suffering from self-stigmatisation and denial.
Why HIV-positive children need counselling
According to the International HIV/AIDS Alliance, counselling helps children tell their story, make choices, recognise their strengths, develop a positive attitude to life and cope with problems. It also helps them deal with fear and anxiety about their illness.
Rose Nasaba who has counselled HIV-positive children for over 10 years, says: “If not helped through counselling and guidance, HIV-positive children grow up with a lot of anger.†As adults, such children may fail to form appropriate relationships.
All children, whether sick with HIV or not, have the same needs. A child living with HIV, however, needs assurance that there is a future to live and neither they nor their parents are to blame for having HIV.
The child needs support to live positively with HIV. This child needs information regarding his or her sickness, and what is going on around them. Being HIV-positive does not stop them from enjoying their childhood.
Unfortunately, many parents and caretakers find it difficult talking to children about their HIV status. While some parents are frightened of answering questions that might arise from such talk, others feel children should not be involved in discussing ‘adult issues’.
This, however, denies the child the opportunity to get appropriate support through counselling.
Rose says counselling children is different from counselling adults and requires specialist skills. “While adults communicate through talking, children communicate through playing and drawing to express their feelings and concerns.
This way, a counsellor is able to hear the things the child is not saying. Thus children need to be involved, allowed to ask questions and express their fears.
Counsellors also discuss death with these children, which requires a high degree of honesty and truthfulness.
Counselling for HIV-positive children needs to be made more widely available. Musiime says mentoring can create a multiplier effect.
“We need to start with what we have. So we need to retrain adult counsellors to take on counselling for children, especially upcountry,†he says.
In Rose’s view, the communities should be facilitated to contribute to the holistic growth of the children. Teachers need to be equipped with skills to handle HIV infected children.
Caring for sick parents and siblings and growing up with HIV causes a lot of trauma to these children. They miss classes, doze during lessons and sometimes, score poor grades.
Teachers need to spot these troubled children and draw strategies that can help them compensate for lost time and opportunities.
The Government should work at ensuring that all health facilities that provide ART services are also accredited and equipped to provide counselling for children, especially in the rural areas where choices are limited.
Dan is approaching adolescence thus many changes are happening in his life; he is experiencing rapid growth physically and sexually.
He needs to be educated and counselled on the importance of being sexually responsible to prevent the spread of HIV.
The writer is a MIJSPH/CDC HIV/AIDS Fellow attached to the school’s Department of Health Policy, Planning and Management and The New Vision