Better adherence to antiretroviral treatment, psychological support, risk reduction and prevention… support groups have beneficial effects on children whether they are living with HIV or are affected by it. However, new programs often bring with them new problems: How do you organize them? How to find the right words to talk to young people? People involved in the psychological care and support of children discuss what they do and how they go about it.
Whether organized for HIV+ children or for those who are affected by HIV, the purpose of support groups is to help the children cope better with the emotions related to the illness. Participating in a support group helps them realize that other children their own age can also have HIV and give them the chance to be able to talk freely about the infection. In a world where HIV/AIDS is too often seen as a “shameful disease”, these young people live in the fear of being ostracized if people find out that they are living with HIV. Hiding their situation is a heavy burden to carry. In support groups they can share their secrets, express some of their bitterness and anger, and give each other comfort.
”The support group recreates a social link that has been damaged by HIV”, emphasizes Dr. Souleymane Coulibaly, psychologist at Point G. Hospital in Bamako (Mali). ”These discussions, which are confidential, create cohesion in the group and reinforce solidarity among the participants. It is practically the only place where they can talk openly about their problems”, explains Fabienne Hejoaka, a PhD student in anthropology at EHESS, who helped set up a support group at a community-based organization in Bobo-Dioulasso (Burkina Faso) named Association Espoir pour Demain (AED).
The goal is also to enable these young people who have low self-esteem to improve their self-image. They need to be helped to regain confidence in themselves and because they do not feel able to plan, they find it difficult to imagine a future.. The facilitators play a major role in helping them to overcome their anxieties and provide examples of people who are living with HIV and who are working as well as successfully maintaining a family life.
Better information about the illness
”Support groups help children better understand the illness and to accept it”, Christine Kafando, AED’s president says. “They find answers to their questions about modes of transmission, prevention, treatment and follow-up…” These conversations help young people improve adherence to their therapies. They have often run into problems adhering to their treatment before participating in support groups because they weren’t aware that they had HIV. This is because the majority of families prefer not telling children they have HIV for as long as possible. Consequently, the child doesn’t understand why he has to take medicine every day and tends not to take the medicine on a regular basis.
Now, people involved in the fight against AIDS try to facilitate dialogue around the illness. Some support groups prepare the young people for being told about their HIV status. ”With the parents’ and guardians’ permission we tell children in support groups their HIV status. This means that we have to first provide them with detailed information about the illness and then after disclosure, follow this up by responding to their questions and concerns in the following sessions ”, explains Dr. Isabelle Traoré, support group facilitator at Gabriel Touré Hospital in Bamako.
These organizations also provide groups for parents and guardians to support them while they set up the right conditions to disclose their children’s HIV status to them. (See Grass roots work with REVS+)
Prevention awareness rising for young people
In addition to helping with adherence, these support groups are also a place to inform young people living with HIV on prevention issues. It is necessary to inform teenagers who are discovering their sexuality on how to avoid superinfection and transmitting HIV to their sexual partners. The risk of unwanted pregnancies must also be dealt with since they are not uncommon among teenagers living with HIV.
”We cannot just have a moralizing attitude and preach abstinence without talking about condoms because these teenagers are often already sexually active and may already be taking risks. Also, they are often already living in secrecy and fear of being ostracized. If we ask them to refrain from having relationships because they might infect others they often will feel guilty and become withdrawn”, explains Ramata Diallo, the psychologist who facilitates the AED support group in Bobo-Dioulasso.
A place for listening to children affected by HIV
There is also a place just for children affected by HIV whose parents have died or are living with HIV. These children experience the consequences of the illness and also experience how it affects those close to them.
”They serve as caregivers for their parents or their brothers and sisters living with HIV and they have to take on a lot of responsibility… Members of the family say things to them like, ‘You can’t complain, you are neither tired nor sick.’ But they too need support and they need to talk about what they experience”, asserts Fabienne Hejoaka. Also, it is just as important to sensitize young people affected by HIV to risk reduction/prevention within support groups.
How do you organize support groups?
It is recommended that you set up a specific group just for children who are living with HIV and who are aware of their HIV status. A heterogeneous group that includes both HIV+ children and those who are affected by HIV quickly reaches its limits. Issues specific to children living with HIV such as adherence to medicines cannot be addressed in detail. Children who are affected by HIV may feel that they have no right to complain when they are side by side with children living with HIV when, in fact, they too can face difficult situations (the fear of losing their parents, being mistreated by guardians, etc.). They can also have a hard time expressing certain feelings and fears. ”For example, if two sisters are in the same group and one is living with HIV while the other one is HIV negative, the latter may not be able to talk about certain issues such as ‘I’m afraid that my sister could die.’ ”, describes Fabienne Hejoaka.
It is also important to consider the children’s age. Of course, one can’t talk to a 10 year old the way one would to a 16 year-old. So it is best to create groups that are set up according to age.
Create a real dialogue with the children
”You have to be careful not to have groups that wind up being a monologue by the facilitator and that raise issues about AIDS and prevention in a general way without talking with the children about “their” AIDS and “their” parents’ AIDS ”, cautions Fabienne Hejoaka. To encourage interaction we can suggest the children express themselves as long as it isn’t felt as pressure. ”Instead of saying to the child: ‘Go on, talk!’ the facilitator can ask: ‘Who would like to say something?’ or tell a story to start off the discussion”, she advises.
Silence should be respected: children can be quiet in the beginning because it isn’t easy for them to put their feelings into words. To get some ideas from young people and familiarize yourself with the subjects that might interest them you can set up a « question box »: “Teenagers put their question in the box. This is anonymous and they can feel free to bring up all of their questions, even the most sensitive”, underscores Ramata Diallo of AED.
Also, “different media such as drawing, working with clay and role-playing can be used to help children express themselves”, describes Dr. Souleymane Coulibaly.
The advantages of having peer-counselors
Peer-counselors can facilitate dialogue. ”When peer-counselor orphans help facilitate support groups, it encourages trust. Since the participants are the same age and have the same kinds of problems as the peer-facilitators, they identify with them and feel comfortable confiding in them, and discuss their issues more openly than they might with an adult”, explains Kolou Rodrigue Koffi, President of N’Zrama, an organization for orphans living with or affected by HIV in Bouaké, Côte d’Ivoire.
Combine support groups with individual counseling
Organizing support groups makes it possible both to better inform young people as well as to support them in situations where they feel the burden of secrecy and the fear of being ostracized and they also help them to regain their self-confidence. Still, some teenagers are in situations that are so complex and painful that being part of a support group isn’t enough. Some of them need individual therapy.
”If a teenager is expressing too much pain in front of the others in the group, you have to know how to set limits to protect him/her. In such a case it is better to continue with him/her privately in addition to being a member of the support group. This way you can talk to them about their personal history and details and give individualized support”, recommends Ramata Diallo.
An interview with Sabine Wibaut, nurse specialized in mental health and health education at the TRAC clinic in Kigali, Rwanda.
How did you set up the teenagers living with HIV support groups in your clinic?
We suggested it in June 2005. “Word of mouth” spread quickly from the TRAC clinic waiting room pushing parents and guardians to accompany their children so that they could talk about their illness and inform them of their HIV status-- the condition being that to participate in support groups the child had to know and understand that he/she was HIV+. Because of the differences in children’s maturity, we divided them into groups as follows: 6 to 9 years old, 10 to 12 years old, 13 to 15 years old and over 15 years old. The over-15 year old group was divided again into two because we saw that some issues that came up for those who had been positive since birth were not the same as the ones that arose in the lives of those who had become positive through a risk that they themselves had taken. Then all of the facilitators worked together to plan the groups. Different subjects are addressed depending on the interactions and interests observed in the preceding groups. Groups are then managed on the concept of the “group dynamic”. There are general guidelines that propose the types of themes that each group could discuss and the facilitator plays the role of “catalyst” as the children express themselves.
What kinds of things do teenagers want to know about and what are the most frequently asked questions?
The questions that come up the most often are about their future, about death and about relationships. They talk about the difficulties they have with their medicine, such as: “Why do we need to remind ourselves daily that we have AIDS?”. So the facilitators had to infuse the group with “positive energy” so that these young people could feel as full members of Rwandan society.
What are the advantages and limits of these support groups?
The children can break the silence and finally share the secrets of their illness with others. They discover that they are not alone in experiencing mourning in their young lives. Through these conversations the child finds hope that assists him/her to better managing his/her illness. Their activities in the support groups are designed to reinforce the children’s “resilience” and to give them tools to live positively with their virus. They can put into words the things that are hard for them and feel understood by their peers. But they have many needs. First they have to accept living with this reality. Many children have the symptoms of spasmophilia, or other anxiety disorders that are difficult to manage. On top of that, there is an array of psychosocial problems. 90 % of the children in the groups are orphans. 60 % of the foster families live on less than 10 dollars per month. 40 % do not go to school. 70 % of the families have to walk for at least two hours to come to the clinic. For effective follow up we will have to plan over the long term and take into consideration all psychosocial factors. Currently, ARVs and consultations are free but will the « health» of these children be guaranteed? The group has given the multidisciplinary team the opportunity to understand all of the hardships that these families face. Several programs have thus been put into place to help: financial aid for school, home-based support, helping with disclosure, nutritional support, social support (money to help with rent, paying for clothing, health insurance, etc).
What are the parents attitudes concerning their teenagers’ involvement in these groups?
Parents and guardians told us that their children seemed much happier ever since they began participating in the support groups. We observed that the young people see each other outside of the group and support each other. For example when a person didn’t come to a meeting because of hospitalization they took it upon themselves to visit the person. At the same time as the children’s groups are being conducted, there are also parents and guardians groups because they too need psychological support. The parents/guardians are viewed as partners by the multidisciplinary team.
