Guest Blog Post: Project Khuluma

Giving HIV Positive adolescents in South Africa the support they need to overcome social isolation and stigma

The following is a guest blog post kindly prepared by Indigo grantee, SHM Foundation

The SHM Foundation over the past few years has been designing and implementing a support group model for those living and affected by HIV/AIDS in Latin America (Mexico and Guatemala), the UK and South Africa through the use of basic feature phones.   The most recent project that the SHM Foundation has undertaken is Project Khuluma that is currently running in Pretoria. Khuluma has been creating mobile phone support groups for HIV positive adolescents that run for a period of three months. Over 15% of young women and 5% of young men aged 15-24 in South Africa are infected with HIV. With the roll-out of medical treatment many who acquired HIV through birth are reaching adolescence. While this is a success, it raises its own challenges, as, in addition to the general issues associated with adolescence, these young people must navigate their developing sexuality and HIV status. Many HIV positive adolescents live in challenging home environments where their support structures may be limited due to the impact that HIV has had on their households. Levels of stigma towards those infected with, and affected by, HIV remain high. With that, the negative impact on adolescents mental health is significant. This conglomeration of risk factors has shown to be associated with non-compliance of medical treatment. For reasons of geographical and especially social isolation, many adolescents living with HIV/AIDS are confronting these problems alone, either choosing, or being forced to go without any form of emotional or peer-group support.

Much like a physical support group, Khuluma provides facilitated and interactive support to closed groups of 10-15 participants. Participants are able to communicate amongst themselves with a trained facilitator via mobile phone about a broad range of topics, while remaining anonymous to one another. Guest speakers are also invited into the groups to run facilitated discussions on specific topics such as nutrition, careers advice or sexual health. Testing out this model with adolescents has shown to be very effective in providing ongoing social support. It can be very challenging to provide support groups for adolescents; because of stigma, discrimination, a lack of space to run them in clinics, a shortage of appropriately trained staff to run the groups and the capacity to provide regular sessions. The findings form Khuluma are so far very encouraging, the most significant findings have been increased feelings of social support and self efficacy and decreased feelings of stigma amongst the adolescents who have taken part. Over 15,000 SMSs were sent amongst the first set of groups (35 participants).

Khuluma training tool image

I feel more comfortable talking to people in this group, I am not the only one (Khuluma participant)

I learned that I should not be afraid to talk about my feelings (Khuluma participant)

No one had ever asked me to talk about my feelings in this way before. As I opened up more I learned to trust and could share more (Khuluma participant)

With the generous funding from the Indigo Trust the SHM Foundation were able to build a training tool for those who want to take on the role of a mentor in future support groups. The tool can be viewed by going to the following website: www.mykhuluma.org. It has been built to help mentors compose and send messages on a range of different topics, access up-to-date information about HIV and enable them to support others in a support group setting. Our first set of mentors have now been selected, the training tool will play an important role in providing them with the support that they need so that the SHM Foundation can continue to expand the model and provide more support groups.