Engaging south african youth and women on the theme of tuberculosis and HIV using a digital storytelling approach

Intro

Organisation: Sustainable Livelihoods Foundation

Country: Cape Town, South Africa

The objective of the research was to better understand the direct personal impact that TB and/or HIV have on the lives of people living in poverty in South Africa, using the participatory methodology of digital storytelling. Digital storytelling is a learning,  creating and sharing experience supported by technology, allowing participants to produce their own short film containing voice, imagery and music. Community members have created a series of digital stories, vividly depicting how TB and HIV have deeply affected their lives.

The research was undertaken with seven participants from two townships in Cape Town that have high rates of TB, HIV and TB/HIV co-infection. Six out of the seven research participants were identified through a TB and HIV/AIDS prevention focus group (The Delft Community Help Campaign), comprising 20 members, that has been established through SLF as part of an ongoing community engagement initiative in the township of Delft supported by the USAID Tuberculosis Program South Africa.

Digital Stories

Two of the digital stories from this process are shared below:

Digital story ‘Inkedama (Orphan)’ by Siphokazi:

  • Siphokazi’s digital story conveys fear of stigma of HIV/AIDS in Cape Town, South Africa; it speaks of non-reconciled pain and grief; of marginalisation and exclusion of orphaned children. Siphokazi tells the emotional story of her mother’s illness and death. She describes how at fourteen, she watched her mother get sick. She speaks of her own confusion, her loss of identity, her sense of disorientation. Her pain, sense of neglect and deception are felt as nothing is explained to her.
  • Lack of dignitiy marked her mother’s passing and Siphokazi was left alone in her sense of grief and loss. After 13 years, this young woman sees no change for orphans like her. She wishes “someone could show them the way, comfort them, guide them”. She wishes “someone could show them not to give up and sleep around because they don’t have a place of their own”.
  • Siphokazi Mkungwana is a 27 year old isiXhosa woman who was raised in Gugulethu and now lives in Delft. Siphokazi is the Chairman of the Cape Town branch of an NGO called Tshintsha Ma Afrika which was originally founded in East London. Their aim is to start an agricultural project in Delft with one of the objectives being to provide food for people who need to take medication (eg for HIV and TB) but have nothing to eat.

Digital story: ‘To be an Example to the Community’ by Ingrid Dlakavu

  • Ingrid tells a digital story* of her journey with TB as a young mother in Cape Town, South Africa. She speaks of the tiredness, the restlessness, the inability to concentrate that threatened her attendance at college. She speaks of the nervousness and fear she felt while waiting two days for the results. Most poignant is her account of breaking the breastfeeding bond in order to save the life of her 9-month old son. Today she and her son are healthy. Ingrid is learning more about TB. She is passing knowledge onto friends and family because “when you know more, you do better.”
  • This short story speaks volumes about how knowledge affects change. Although the diagnosis of TB was a stumbling block for Ingrid while she was studying and learning the ropes of motherhood, the knowledge that she could defeat the disease by completing a six-month course of antibiotics gave her the will to do so. A further aspect of Ingrid’s story that provides a valuable message is the support she was given as a TB patient by her family members. In addition to these positive insights, we are reminded about the multiple challenges of living with tuberculosis.
  • Ingrid Dlakaru is a 22 year old is a Xhosa woman living in the township of Delft. Ingrid is a student and is involved with the NGO Tshintsha (Change) Ma Afrika.

Images were taken during the digital story telling workshop done in Cape Town, South Africa

Research findings

The research project has enabled people in South Africa to express their perspectives of living in a vulnerable township where poverty is multidimensional. They express how their situation is exacerbated by the ongoing transmission of infectious diseases that marginalise people from society.

The multiple consequences of the HIV/AIDS epidemic continue to place a heavy burden on the poorest South African communities. This is despite a diverse, nation-wide, HIV/AIDS awareness drive ongoing in South Africa for over ten years – including the popular Love Life campaign, an increase in the availability of counselling and testing services and the roll-out of free ARV therapy, especially through the non-governmental sector.

HIV/AIDS and tuberculosis (TB) have had a damaging impact on the support structures within the family and community that protect and enable people to live happy and healthy lives. HIV/AIDS related stigma ruptures social and community cohesion, isolating people and breaking down the informal support structures that ensure safety and security in people’s lives. Stigma also prevents people from accessing treatment, clinics and the support of community health workers because of the visibility that seeking these services implies. Stigma can also generate feelings of self-blame which can have long-term negative emotional, psychological and physical impacts on those living with TB and HIV, and their families. These psychological impacts are mirrored in orphaned children who are trying to reconcile the trauma of losing a parent, and rejection from the community as a result of this status.

There is still inadequate support for people affected by or living with HIV/AIDS. HIV relevant health service policies are not designed to address the complex needs of children, and service providers lack the relevant training and resources to support them and ensure their wellbeing. It is also apparent that grant-based social protection mechanisms are creating dependencies in communities, as policies and programmes are not taking into account the wider social and economic context in which people live.

Knowledge, both formal and informal, is seen as important. Education  is helping people to access and share basic knowledge; however, closer assistance from care workers is also essential for providing one-on-one guidance and context-specific support. The increasing prevalence of drug-resistant TB in South Africa heightens the urgency to improve health services. The sharing of experiences of living with infectious diseases can also support people to find answers to the challenges that they face by learning from others – positive examples where TB has been cured act as a source of encouragement.

Reference: SLF 2013b in Work with us: How people and organisations can catalyse sustainable change, Brighton: IDS.