SUCCESS STORY: CARE and the Caregiver Programme

Holding together, turning around:
Intervening with love in a caregivers' support group

The Caregiver Support Group at the eThembeni Methodist Church in Inanda had been getting together every week for five years, yet the women barely knew each other.

Zoe-Life's Paediatric Psycho-social Support team discovered this in August 2009, at their first encounter with the group, which is hosted by one of our partner organisations, CARE (Christian AIDS Response and Education). The team had introduced the group to our KIDZalive Wellness Day - a fun activity programme designed to energise and educate children and their caregivers towards knowing their HIV status and living healthy, positive lives. Caregivers are the most suitable figures to facilitate HIV testing for children and to disclose an HIV diagnosis to a child, but most resist or delay disclosure because they do not have the knowledge, skills or confidence to undertake this process.

Although everyone enjoyed the day, the facilitators noticed that the caregivers evaded discussion about the benefits of HIV testing and giving consent to have their children counselled and tested. The team returned to eThembeni later that month to begin taking the group through our 10-session KIDZalive Caregiver Programme, a psycho-educational course that prepares children's caregivers to identify and work through their own unresolved psycho-social issues around HIV infection.
 

The first session revealed the depth of isolation in which the women in the group were living. Hombisa, one of the team's support facilitators, explains:
"Dialogue had not been initiated or guided at all since the group formed. The women were very withdrawn, and the ice was extremely hard to break. They would not name their illness or admit their status to one another - in some cases, not even to their family members. In five years, they had only come to the group for relief and to collect donated goods. They didn't even know where each other's homes were!"

The team used two tools to generate openness among the caregiver about their condition, and to establish a baseline scenario of their attitudes and experience. The first tool was a Journey Map: plotting a course from where and who each woman perceived herself to be in the present, illustrating it with symbols of the challenges, danger, support and opportunities along the route, and ending at the destination of where and who she wished to be. Some group members could not articulate their journey without being stalled by intense anger, shame, self-blame and fear.

The second tool was a web formation, with the women moving in a circle and using wool strung between them to describe their connectedness and the strength that is created when many firm bonds are made and held. However, rather than experiencing a sense of grace and hope in unity, some women felt trapped by the closeness, and others were annoyed at having to conform to the group rules in the exercise.

It was clear that although some informative seeds had been sown, it was necessary to postpone the formal Programme sessions until deeper levels of trust could be established. The team remained socially engaged with the group in the months that followed, talking with them and gradually stimulating discussion among them about the generalities and aims of wellbeing.

In June 2010, the group and the team agreed to begin the Caregiver Programme afresh. When they formed the wool-web again, Hombisa asked the women to express why they were gathered there. When one woman whispered "HIV", all the others looked down in silence. Hombisa persisted and asked her to say it loudly, but the woman faltered, dropped her strand and left the room. Her fellow caregivers immediately felt the weakness in the fabric of the web, and a second woman said "HIV!" more clearly - but very quickly, followed by a list of opportunistic infections (regarded as acceptable conditions to disclose).

This event opened the first crack in the ice, and the women started to share their views on the power of the name: "HIV". The virus had such claim over their bodies and sense of identity that they believed repeating its name increased their risk of being re-infected with it. They had stigmatised themselves and each other under its spell, and had for so long internalised all the pain and negativity it had brought into their lives that they felt worthless and repulsive to others, to their ancestors, and to God.

In the sessions that followed, Zoe-Life's support facilitators Hombisa and Sindi led the women through all the silenced, hurtful issues, into anger release and how to address HIV stigma, helping the women to understand what acceptance entailed, how important it was to value their lives and uniqueness, and urging them to cry with and for one another.

After a time, as the women focused on the letters "H", "I" and "V" and what these stood for, they broached their own solution:
"What if we turned these letters around?" said some. "What if we made them spell V, I, H?"
"Why not say V means vuma [accept]?" said another.
"And that I means impilo [health], and ..."
"H can stand for hlola [test]!"
"Or for hleha [protect]!"
"Then we can turn it back around again, so HIV can stand for 'hlela/hlola-'impilo'-'vuma': 'protect/test'-'healthcare'-'accept'."
As these voices formed an excited chorus, the women's journey into growth and wholeness progressed.

In all our programmes, while Zoe-Life's organisational approach is to work with, and within, a given reality, we resist conforming to that reality, in order to open up space for making possible the seemingly impossible. The eThembeni caregivers' triumph in turning a hated name for a fearful disease into a template for love and healing demonstrates the efficacy of this approach. In just over a year, they moved from hopelessness and self-loathing to a life in which they are inspired to change their own perceptions and share their knowledge with others.

The women have developed strategies to do this, such as going individually or in groups to clinics where HIV-positive patients are separated from others, and educating the nurses there that everyone has a right to care and respect. They continue to work together in their newfound framework of self-acceptance, and - at last - they are visiting each other and gathering in their own homes. Says Sandy, our Paediatric Psycho-social Support Officer:
"As someone who cannot speak isiZulu, I relied on non-verbal cues to gauge the women's dynamic towards each other, and I could see and feel their mutual affection and regard. We define their success by these authentic relationships, because these are what will last beyond the 10 sessions of our programme."

Zoe-Life has learned much from the eThembeni caregivers. Their courage and creativity has informed our programme development. We have observed that testing of children and treatment adherence cannot happen effectively unless their caregivers have been empowered first. Also, we know now that disclosure cannot be suctioned into being; clients need support in emerging from seclusion into relationship. These women and our team have co-created a model for millions to follow.