[#WHD2017 Africa Blog Series] Inspiring African Innovations: Khuluma Project
This blog is part of our series celebrating World Health Day 2017. This year's theme is Depression: Let's Talk and we're showcasing inspiring innovations addressing depression across Africa.
Supported by the SHM Foundation, the Khuluma Project provides psychosocial support for HIV positive adolescents in South Africa using mobile technology.
Tell us about your country’s context and the circumstances that inspired your innovation
Adolescents living with HIV (ALHIV) are a key population in the global effort to end the AIDS epidemic by 2030. Increased access to testing and treatment has resulted in lower rates of HIV-infection and AIDS-related illness and death among adults and children. However, among adolescents, rates of HIV infection remain extremely high, and AIDS-related illness is the primary cause of death among young people in Africa. Adolescents are less likely to engage in HIV testing or to access treatment than adults, and when they do access treatment, keeping them in treatment is a challenge – and in terms of HIV treatment careful monitoring and strict treatment compliance is essential. Although there may be some biomedical barriers to treatment adherence, psychosocial issues including disclosure, stigma, discrimination and a lack of social support, as frequently underlying adolescent HIV treatment failure.
Lofty policy goals notwithstanding, in South Africa primary health care services are often over-stretched, and mental health is not prioritised or viewed as completely separate and secondary to physical health. Even where psychosocial support services are available, ALWHIVs may not access them due to fear of both HIV and mental illness stigma, both of which remain prevalent across South African society, and opportunity costs like having to travel long distances to access these services which might not be available at times convenient to those in need. Recognising the need to make mental health care more widely available to under-served populations, the SHM Foundation, a UK-based charitable foundation, has worked to develop affordable and scalable mechanisms of improving access to psychosocial support. Project Khuluma was launched in South Africa in late 2013, specifically targeting the mental health and wellbeing needs of ALHIV.
Based on the idea of peer-support, which has been shown to be effective in helping those with chronic conditions to manage their illnesses and to deal with the challenges that they might be facing, Khuluma provides ALHIVs with immediate access to social support whenever they need it and wherever they are. Much like a physical support group, Khuluma provides facilitated and interactive support to closed groups of 10 to 15 participants, but the use of mobile text-message helps overcome some of the obstacles which might prevent individuals from accessing social support. Participants in support groups are able to communicate amongst themselves and with a facilitator about a broad range of topics, while remaining anonymous to one another, without having to travel to a specific location at a specific time.
Have you noticed an impact ‘on the ground’? What is the best feedback you have received (from service users, team members, or otherwise)?
So far we have worked with about 150 HIV positive adolescents in Pretoria and Cape Town, and through data evaluation, have found: a significant increase in perceived social support; a significant decrease in internalised stigma; and positive trends towards increased adherence self-efficacy and problem solving self-efficacy.
Participants have described the groups as helping them to overcome feelings of loneliness and isolation and to improve their self-esteem, as well as helping them to accept their status. “Khuluma made us comfortable with ourselves”. Khuluma participants have gained a sense of belonging and “being normal”. “It changed how I feel about my status, now I feel equal to everybody else”.
Furthermore, Khuluma participants have shown an increased willingness to discuss their medication and to open up with their peers about challenges they face when taking their medication and managing their condition. In conversations, participants have begun to explore the underlying psychological and social challenges that interfere with their adherence to treatment and encouraged one another to work through some of these feelings: “I learnt to take my treatment more seriously”; “It helped us talk about medication and how we feel about it”
Going forward, Khuluma is looking to scale up across South Africa (and beyond), and to explore the application of the model of delivering psychosocial support to other chronic illnesses. Khuluma is working to mobilise group participants to provide psychosocial support to others in need – we hope to develop this into a train the trainer model to enable us to scale up quickly and sustainably. We are also working to include support for parents/guardians and also to, build community conversation into the intervention as we realize the critical importance of engaging the context in which the participants live in order to enhance and sustain efficacy.
What is the one message about depression you want people to take away from your innovation?
Khuluma gives HIV positive adolescents immediate access to psychosocial support; helps decrease levels of internalised stigma; helps to increase willingness to discuss treatment and to access assistance for challenges they may be facing; thereby providing a support mechanism to encourage treatment adherence.
Psychosocial support is a vital component of ensuring adherence to HIV/AIDS treatment. Having access to peer-based psychosocial support is an important mitigator against the precursors of depression (loneliness, isolation, negative self-image), which are known to undermine treatment adherence and are associated with negative health outcomes.
For more African innovations featured in this series, please visit the [#WHD2017 Africa Blog Series].