Voluntary HIV/AIDS home-based care work traps = A predatory health care system?
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Last year, I had engaged voluntary home-based care workers and HIV/AIDS peer counsellors in small group discussions, using action learning and encouraging each to keep a personal journal on their care work experiences. The need for the "debriefing of traumatised" home-based care workers was identified by a peer support training organisation together with a managing governmental official, HIV/AIDS counsellors, home-based care workers and their community organisations in Tshwane, South Africa. When the government official requested me to do "debriefing sessions" with the home-based care workers, and offered payment thereof, I was impressed about their serious attending to the care worker’s personal and community development challenges. At commencement of the sessions, I was also moved with the great number of volunteers, many but not all of them HIV-positive, mostly women, many mobilised by members of the health department and community groups in support of people living with HIV/AIDS and dying at home. I thought: "something positive is happening - community organisations are being sponsored to train community volunteers in peer counselling and home-based care". The voluntary workers opened up very easily and offered many personal stories about their home-based care experiences that made them feel traumatised and powerless. I was hoping to assume a developmental orientation, promoting more than mere crisis intervention. I managed to give the counsellors and care workers an opportunity to reflect on and share experiences related to an appreciation of their services, eg what motivated them to do this kind of work, their personal tendencies and how they dealt creatively with problems. They also voiced common dilemmas pertinent to policy-making and funding. Common themes included: being in the front line and having to deal with all the needs of the patient/client; the lack of multi-sectoral and inter-departmental co-operation; voluntarism requires incentives and material support; and, care givers are not always given the recognition they deserve, yet they are being co-opted for the selfish needs of the health sector. We also explored a model for care worker self-development, which entailed balancing power and control issues with facilitating information flow and creativity. My sessions were however stopped halfway through by the manager of the organisation that had arranged them. He informed me: "government decided to stop funding of small organisations". I responded by calling all participants together into a final session, pulling together their common themes and frustrations into a collective feedback report to the AIDS directorate of government. I thought that a shift to facilitating information flow would render a response, only to find that our government contact persons claimed that they had not received our report. Moreover, I was informed that it was the said organising NGO who's sponsorship was stopped, that government never requested "debriefing sessions", that we should not consult "the wrong officials", etc. I could not help feeling somewhat mislead and paranoid. What happened seemed to me a repetition of my story that I tended to be eager to help others, only to be abused by individuals or the system. The virtual conference page on "Something for Nothing" also encourage me now to wonder about the costs and gains of voluntary work for each participant involved - the client of the home-based care worker, the volunteer, the NGO management, government, professionals … Are we building a "predatory (health care) culture" of "stalkers and victims"? (McLaren, 1995). What kind of traps do we set?
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