Adolescent HIV Program
Many perinatally HIV infected children seeking care at Prayas are now entering adolescence or early adulthood. Till beginning of 21st century, it was not anticipated that these children would survive till adulthood. Availability and increasing access to anti-retroviral treatment (ART) have made this a reality. Appropriate ART would delay HIV disease progression and reduce HIV related mortality.
This changing context of the AIDS epidemic is posing unprecedented psychological and emotional issues specific to this group.
Our Adolescent HIV program is working to address these issues.
Growing up with HIV and Transitioning to Adolescents workshops (GUWHATTA)
HIV infected adolescents coming to Prayas seemed to have several concerns and stressors about growing up with HIV. However, in spite of providing space and comfort to discuss them it was observed that they hardly ever verbalized their concerns.
To address this issue we conducted a four days residential workshop with 10 boys and 5 girls between the ages of 14 to 24 years in October 2010. All of them were aware of their HIV status. The workshop was appreciated beyond expectations by the children. After the workshop, the children came together to form a peer group. They named it ‘SO WHAT’. A similar workshop was conducted in October 2012 with 17 new participants. The workshops were organized and conducted by PRAYAS and co-facilitated by AarogyaBhaan (ABHA) - a group which uses innovative strategies for health communication. Some members of the ‘So What’ team also attended the workshop as volunteers.
The objectives of the workshop were
- To create an open and free environment so that participants are able to talk and ask questions about their sexuality.
- To help participants understand their sexuality positively.
- To create a platform for communication during and after the workshop.
- To demonstrate that the ethos of celebration about sexuality can be maintained even with HIV infected adolescents.
Different tools used for communication were music, singing, drawing, skits, group discussions, stories, etc.
Increasingly enthusiastic participation from the children and their intense discussions affirmed the need for such an intervention. The workshops boosted their confidance, induced voluntarism and brought out a desire to contribute.
Now this GUWHATTA workshop is organized for Adolescents living with HIV (ALHIV) from Prayas as well as from outside as per the need.
With a view to take these efforts beyond Prayas, we have prepared a training module for trainers to conduct such workshops. The module is targeted at trainers from organisations/health care providers working for ALHIV. The module is prepared in Marathi as well as English. It provides the details of the methodologies and tools used during workshop. (HIV sah Tarunyabhan Marathi)
The GUWHATTA intervention was evaluated using action research approach to assess its short term impact. (Evaluation report of GUWHATTA)
Plus One workshop: As a next step to GUWHATTA workshops, this ‘Plus One’ workshop was designed in which the ALHIVs got along with them one more member (friend, brother, sister, cousin) who knew about their status.
The workshop was designed to facilitate the communication between the infected and uninfected peers in order to strengthen their relationship. Bonds of friendship, trust and support were reinforced through different activities. The uninfected peers were provided with information related to HIV in order to eliminate any misconceptions. Through the workshop they realized the stigma and obstacles faced by individuals living with HIV. Concerns and expectations were expressed by both the parties. This was also a very enriching experience for the participants and the facilitators alike.
So What!’ is a group of HIV infected youth (HIY), formed to work on ‘Concerns of HIV infected and affected children about growing up’.
The motto of the group is, “So what, if we are HIV infected! We will live life to the fullest and help our peers achieve the same.”
The concept of formation of such a group emerged during the first GUWHATTA workshop organized by Prayas. On the last day of the workshop the participants expressed their wish to extend this knowledge and support to other Adolescents living with HIV. Now this group is expanding as many new members are joining the group after every GUWHATTA workshop.
Objectives ‘So What!’
- Work for HIV infected adolescents.
- Come together and work for upcoming questions/concerns regarding HIV.
- Create conducive environment so that other HIV infected adolescents feel comfortable to talk about their issues.
- Work towards eliminating prevalent misconceptions about HIV.
- Spread more knowledge about HIV.
- Work initially with children coming to Prayas .
- Try and reach out and to join hands with other Adolescents living with HIV all over the world.
Activities of 'So What!'
- The group meets regularly to work on the above mentioned objectives.
- After undergoing an eight days workshop for capacity building, 5 members of the group participated as facilitators in the second GUWHATTA workshop.
- Members of this group developed a booklet, ‘कळलं तेव्हा…’ about their experiences around disclosure with the help of Prayas. This book is meant to motivate parents (who have not yet disclosed the HIV status to their child) to disclose.
- Few members of the group participated in a state-level conference called ‘Children Speak’ which was organized to give voice to the concerns of children from disadvantaged backgrounds.
- An Annual meet was planned for all the adolescents who had attended the GUWHATTA workshop. 40 adolescents participated in this meet. This was more of a retreat to provide adolescents an open and free space to get to know each other better, have fun and decide next steps for the ‘So What!’ group.
- The meeting was held at a beautiful and serene place where the participants and facilitators were very close to the nature and away from the hustle bustle of the busy lives. The adolescents participated in some adventure activities and games. Some sessions were planned to refresh their knowledge about HIV, gauge the retention of information from attending the workshops and deciding the future of the 'So What!' group.
- While discussing they expressed the need to reach out to more adolescents. For this, the strength of the core committee of the group was increased, which would take decisions regarding the activities of the group. Some rules were decided for better functioning of the group. For example: It was decided that the core committee member should be above the age of eighteen years; the core committee should meet at least twice a month.
- It was decided in the meeting that their next activity would be to start peer support meetings in government centers in order to reach out to more adolescents living with HIV. Some group members had already spoken with the doctors at various ART centers and the doctors had apparently shown their support. They all decided to visit and talk to doctors at the ART center of Sassoon General Hospital as many ‘So What!’ members were accessing ART from the facility. They also decided to design activities of the group in detail and to set goals, ensure that the members who would conduct it are well trained and seek help from Prayas wherever necessary.