This month the peer leaders of the support group came together to discuss on the need for disclosure among the peers, especially in encouraging new members to the support group to live life positively.
The need emerged when one adolescent 17 year old is the only one infected in the family who was infected in her small age through blood transfusion and her parents had disclosed her status recently.
She was informed about her status, as her CD4 level was very low and was advised to start ARV treatment. As she has very limited information she was not able to accept her status.
So the support group of adolescents decided the need to openly share their status in helping new members of the group to help them accept the status.
Vanitha expressed that she was prepared to be open about her status, as she realized the importance and that Malini’s disclosure has helped her to start her treatment and manage the side effects of ARV.
“If Malini had not openly shared about her living with HIV and the ARV treatment, I would have stopped my medications as soon as I started, as the side effects affected me so much. But because Malini already expressed how she had problems of side effects and how she had managed it, it helped me so much to cope with infection”.
For Karthik, he expressed disclosure by a peer was very essential as he shared that when he was told about his HIV status he could not accept it, as he again was the only one living with HIV in the family. He expressed that it took him nearly three years to accept and become responsible over his health, until her made another peer member through the support group.
Januray 12th, peer leaders from the support group, wanted to make the day special for smaller children(between the age group of 9 and 12 years) who access the hospital for their monthly check-up and collection of medicines .
The season being a harvest festival, the premises with the help of adult staff was decorated with rangoli designs and colours.This was a surprise to the usual plain walls of the hospital building.
The peer leaders, lead through a discussion on their health status and even helped smaller children understand the CD4 count process and its role on the immune status.
Later sport events to mark the festival were organsied to give them a festival feeling. Then with a loud chorus “pongalo pongal” (local greetings of the harvest time) children shared sweets and sugar cane.
For the peer leaders it was a new experience in making children feel loved and feel good, coming to the medical hospital through such events.For the smaller children, such festival time in the hospital was new and many expressed that this is one thing that cannot be forgotten in their lives.
December month, being Christmas, the adolescents meeting was organised as a get-together at Tiruchengode, Namakkal district. This event included the younger children living with HIV and their care takers. This is to encourage support and motivation among both young people and the smaller children towards wellbeing. But here the children and adolescents were given opportunities to exhibit their skills and entertain the care takers who have been providing care for the children.
Among the care takers, most of them were represented by grand-parents and widows and this gave them an opportunity to understand the skills among the children they provide care
For me, in this meeting when I got along with friends in my support group to dance ,I felt very different. I was more surprised to get appreciation of my dance ,especially from my grandmother-said an orphan child about the programme
It was a bonding of a big brothers and sisters, it was really good and even motivated me that if I am correct on my treatment, I would definitely be healthy too-said a younger child living with HIV
This was truly different for me, as this is the first time, where we had opportunities of us and children together and especially children presenting their talents.i was amazed at my child as she is basically a shy child, but was amazed at the dialogues she said during the stage drama.- care taker of a HIV positive child.
Around 50 children and 30 caretakers participated in this get together, 5 families from the general community also participated and encouraged the children and caretakers to live life positively.
Velan (name changed) is a HIV positive adolescent child, who attends the adolescent support group. He is living with his aunt, his parents both died to AIDS when he was very young.
The medication is affecting his memory and finds it difficult to cope up with the stress involved in his studies. In addition; his aunt is not able to give the best care and hence his immunity is affected and hence absents himself very often from school. His status is not known to his teachers and hence they raise many complaints about his school performance.
But in the midst of all these challenges, he is regular in attending the support group meeting as he feels supported and cared, especially in releasing all the negative feeling he had developed in his school.
Though academically he has not been able to achieve to the expected level of his school teachers ,the encouraging words of his friends has helped him to identify a way in leasing his negative feelings . He once expressed in a group meeting of what he felt like; that “I knew how to draw, but only when my friends appreciate, I admire my art
Vinita is 16 years old coming from a remote village in Namakkal district. It was one such day, on Saturday the 15th of September she had come with her mother for her routine health check –up and blood test. Till that day, she was not informed about why she was going through these tests and her parents had not told anything about HIV. Her parents are already on treatment, but when she enquired about it, they used to say to her reasons, other than HIV.
Only on that day, when she was tested, the counselor at the hospital had told her parents that her immunity was very low and so she has to take medicines against HIV and for this her status has to be disclosed to her. On knowing the status, her immediate response was “why me of all the people. It is a shame to live with the virus, I want to die.”
Beside the center, Shalini our peer leader and Karthik were conducting a support group session with other children living with HIV at the hospital premises. On hearing this, Geetha our staff and Shalini went ahead to enquire Vinita and a touch by Shalini helped Vinita to calm herself.
Slowly, after allowing her to share her emotions, Shalini shared her own life of living with HIV, coping with the infection and how she can be of support to other children living with HIV in the district. This helped Vinita to come out of the immediate stress of knowing her status and even realize that there is life beyond HIV infection. Shalini is following her up through phone calls and encouraging her on a constant basis.
Buds of Christ develops peer leaders like Shalini to be a support and positive influencer for children and young people living with HIV
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