Learn More About The I ACT Adolescent Programme
Bringing Power and Compassion to HIV-Positive Teens
Providing healthcare services to HIV-positive adolescents has turned out to be an entry into providing empowerment to those teens, according to I ACT Adolescent Programme Editor Shenaaz Pahad.
The I ACT program — an acronym for Integrated Access to Care and Treatment — supports people living with HIV or affected by HIV.
The population is big: an estimated 6.4 million adults live with HIV in South Africa. When you include those people’s families and friends, there are tens of millions of people who need good and accurate information about what the disease is, how it progresses, how the immune system works, and how HIV-positive people can live confident and healthy lives.
The program was first designed for adults, but with the help of Wits Reproductive Health & HIV Institute, it has been modified and introduced to an equally needy group: teenagers.
Shenaaz Pahad, a Technical Specialist Psychologist at Wits, is Editor for the new I ACT Adolescent Programme. The program works with teens 15 and up in the Johannesburg City bowl and in North West Province. It provides information on sexual and reproductive health, mental health (including anxiety, trauma, depression, and substance abuse issues), nutrition and self care, and gender roles.
Shenaaz explains how the material was modified for the teen audience and what participants are most enthusiastic about.
What about I ACT made you feel it was a program you could work with?
What I ACT provided was not just a support group as we know it where people go and share their feelings, but a structured and finite educational support group. Participants get support and education about HIV, TB and ways to take care of themselves.
I ACT for adolescents is vitally important because, from the perspective of the Wits RHI program, when adolescents are diagnosed HIV positive, they don’t usually tell other adolescents. They tend to disclose to adults as there is so much stigma around the disease, because it’s transmitted through sex, and so the implication is that you had sex and that’s why you got the disease. But for many of the adolescents in South Africa, they were perinatally affected, they were born with it. There is still a need to enhance this kind of understanding.
It is envisaged that the I ACT Adolescents Program will be used across the entire country by professionals and support staff.
What are some of the considerations you were mindful of when tailoring the program for adolescents?
Considerations were whether the level of the material and the language were applicable. We held a focus group with a group of adolescents where we ran through the new program material. We took the adolescents through each game and activity and asked them to tell us how they felt while doing the activity or game, what they liked, what they did not like. Did they find the graphics too intense or did they like them? Did they find the language too difficult? Did they know about this topic beforehand?
Our biggest surprise was that we all assumed that adolescents know a lot more than they actually do. We spoke to a couple of 13- and 14-year-old girls and they had never heard of menstruation. No one had told them any of this, and they were at the age where they’re supposed to get it. The adolescents wanted more information than less.
We also considered the age groups. What a 10-year-old and an 18-year-old will understand are very different, so we created younger adolescent answers and older adolescent answers. The support group facilitator decides which answer they use.
It was very important to us that whatever we created we checked with the adolescents to see if they thought it was interesting and something they wanted to learn about.
When designing the I ACT Adolescent Program, we thought it was really important that we include information about sexual reproductive health, which most adolescents have little knowledge about. We wanted them to learn the right message and we thought through I ACT we could ensure that in a fun way. We really deliberated about this section. How do we teach adolescents 10-19 years old about puberty — such as what is menstruation, what are erections, what are night emissions, what is masturbation, what is sex, and what is gender and sexuality? We also added a new section on mental health which the adult program didn’t have — and now will.
Did you modify the section on “acceptance of status” for teens? That’s such a crucial step.
Yes. Disclosing one’s status is difficult, but for adolescents it is even more complicated. The disclosure process determines how HIV- positive individuals view themselves and what their life is going to be like thereafter.
We thought that it was important that adolescents really understand the implications of disclosing their status to others. We approach this discussion in the format of a game focusing on confidentiality. We discuss that whatever is disclosed in the group stays within the group, because many people within the group have not disclosed their status to anyone, so we need to respect them and their decision.
Can you describe an experience that really gave you a sense that an adolescent was being empowered?
I saw friendships form among adolescents who didn’t know one another and who came from different areas, different ages, different races, and different experiences. At the end of the day, the adolescents swapped telephone numbers and started making plans together. That is what we want for this type of support group, because that’s what HIV-positive adolescents don’t often have. They can’t share their status freely because of fear of discrimination.
To see adolescents who happen to have HIV in common talking, connecting and supporting each other as regular adolescents do is really great.
Is there a mechanism that if something comes up for one of the adolescents in the class that they have a resource to go speak to outside the group setting?
We have included referral services such as Young Africa Live (YAL), which is a social media site that adolescents can join to have online chats with other adolescents. Once a week a medical doctor and professional counselor will answer any questions they need answered.
South Africa has a very interesting situation where 91% of the population owns at least one mobile phone, so linking with a resource like YAL is very appropriate. Adolescents are constantly glued to their mobile phones. Referrals to other services that are available, such as social or medical, is also part of what is taught to the program Facilitators.
So social media resources are an option the adolescents are comfortable with?
Very comfortable. We asked them, because we are opening an adolescent specialist clinic and we wanted to know how they wanted to communicate with it. Their responses were, “via SMS and Facebook.” They wanted to be communicated with through the use of technology.
Online is a safe space for finding information. You can see whatever you want without the whole world knowing, and without a lot of the stigma and judgment that often comes from healthcare workers with regards to adolescents. Being met with judgment and anger rather than support is the biggest challenge adolescents have to face when entering the healthcare system.